tag:blogger.com,1999:blog-46982023793356505592023-11-16T06:22:27.245-08:00Miracles for MilesA family's precious life. Their youngest son born with Spina Bifida and experiences the worst complications possible. They learned their third son will be born with the same disability. They chose joy. MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-4698202379335650559.post-23085741106137162442017-12-04T21:40:00.000-08:002017-12-04T21:40:38.222-08:00Warrier Moms- There Is A Price To War
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOp9n3-ZSS9ycTTUDOrtm9nUhQP17W6nDcdswL_iDKg5AXro7qSJJjo5-FDTPmpAxY_u8ZSlB6py-G-PLBUyosk3nzZUht9NRSS4cHTsNcad8aKHyjgk11wEj3Sh_OPLY4psepg9kWlQ/s1600/Lefebvre+Day+In+The+Life+Finals-0415.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1068" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOp9n3-ZSS9ycTTUDOrtm9nUhQP17W6nDcdswL_iDKg5AXro7qSJJjo5-FDTPmpAxY_u8ZSlB6py-G-PLBUyosk3nzZUht9NRSS4cHTsNcad8aKHyjgk11wEj3Sh_OPLY4psepg9kWlQ/s320/Lefebvre+Day+In+The+Life+Finals-0415.jpg" width="213" /></a></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Today I felt like I was in battle. I drove home from Phoenix
Children’s Hospital with my shoulders slumped, bumped and bruised, with nothing
to show but wounds. Since I have two sons that are medically fragile and complex,
I spend a lot of time advocating for my kids. Advocating is really a sugar
coated word. I’m battling. Punching until my knuckles bleed- screaming until my
voice is hoarse- throwing elbows that would make Christina Aguilera proud. I’m
in the trenches daily. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">My 11 month old son desperately needs his 5<sup>th</sup> and
6<sup>th</sup> brain surgeries, and he needs them urgently. We have had 6 ICU
stays in the last 8 weeks. Anyone could imagine how much “advocating” I have
had to do lately. The truth is, I am not combative. I am a very “Type B”
person. This personality type has pros and cons but one of the good parts is many
things roll off of my back easily. That is, until my child’s life is at stake.
Call me crazy, but that scenario quickly transitions me to the Type A side. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We have been getting opinions from the top neurosurgeons in
the country on how to move forward with Caleb. Every neurosurgeon has a
different plan but there is one thing they all agree on- Caleb needs surgery immediately.
He was discharged from the ICU last week with a plan to have the first surgery
on Monday. I never got a call with surgery information so I began calling the
neurosurgeon’s office, leaving message after message. After still receiving no
communication today, I got in my car and drove to the hospital and walked into
the clinic. They put me in a room for an hour and a half and bullied me. They
belittled me, ignored me, left me crying, claimed there was no time on the
surgery schedule for 2 weeks. I finally found a way to call the surgeon myself.
When he heard what was happening, he was shocked and said Caleb needed to be
put on the schedule immediately. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I won the battle. I was persistent, I didn’t give up, and I
won. So why didn’t it feel that way? </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I learned something valuable during my interactions with
those nurses today. I recorded all of our conversations and listened back to
make sure I was speaking respectfully, calmly and coming from a place of love, albeit
I’m clearly emotional. I’m a reflection of Christ’s love no matter how tense
the situation. The lesson I learned is this. When someone speaks to you in a
hateful way, you feel hated. When they ignore your needs, you feel ignored.
Whatever they project onto you can cling to your energy and now become part of
your story. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I walked through my front door and felt I was a person that
is hated, ignored, discarded, manipulated and patronized. When someone is
simply having a bad day and chooses to provide bad service, it can alter your
perception of yourself. It was the first time I fully understood that another
person’s energy can become my energy. <span style="margin: 0px;"> </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It also made me realize I have the power to stop this cycle.
If I encompassed the hatred that was put on me, how would my children feel? If
I focus on how ignored I felt, who would I be ignoring? </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Sometimes I walk into these battles with my shoulders back,
head high and ready to fight for my babies. Yet even when it ends well for me,
there is a price you pay to battle. Warriors are brave. They are fighting for
other people, fighting for what is good. But they are never the same again.
Soldiers suffer from physical and emotional scars that may never fully heal. They
may be heroes, but they made a sacrifice. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Whether the battle was one or lost, there are pieces to be
cleaned up, injuries that need to be tended to. There is new energy that is
projected and pain as you look back at each punch, each shot, each blow. The
pain haunts your dreams. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It may seem like an extreme analogy but if you have been
awarded the title of Warrior Momma, you earned it for a reason. You have been
through the thick of it. You have fought in many wars; some lost, some won. The
battles have changed the way you perceive yourself. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The price you pay for being a warrior is heavy. War is not
for the weak of heart. Your skin toughens through each battle but your heart
doesn’t. Warriors are given honors and medals, and then pray for peace.</span><span style="font-family: Calibri;"> </span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: Calibri;"></span>MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com3tag:blogger.com,1999:blog-4698202379335650559.post-66587008637925402002017-11-09T21:26:00.000-08:002017-11-09T21:32:39.082-08:00I Use My Child’s Disability to Get Attention<span style="font-family: Arial;"></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYZy9R4L_tANUBz0jhYGV0E75HgkVsNgV-dB9Fc5Fm-8O_HmESlTIKgCL-S4GPK-F0zJp6coanFNtGVzsXfunHTNLO34l2_cAHkLDoR3jpbQ93nXBZiBQ9O-Mv6YNJs63c_f1rSvF1YA/s1600/IMG_0605.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYZy9R4L_tANUBz0jhYGV0E75HgkVsNgV-dB9Fc5Fm-8O_HmESlTIKgCL-S4GPK-F0zJp6coanFNtGVzsXfunHTNLO34l2_cAHkLDoR3jpbQ93nXBZiBQ9O-Mv6YNJs63c_f1rSvF1YA/s320/IMG_0605.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div>
An adorable picture of my son warming my heart before an MRI today? Or an evil ploy to build my own ego? </div>
<div>
Up for debate. </div>
</td></tr>
</tbody></table>
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">We have heard it all. Since opening up about our story over
3 years ago, there have been a p</span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">lethora of responses. People tend to be
fascinated by stories of human suffering, yet they can have a strong reaction
toward the pain of others. Since we have 2 medically fragile children that have
had dozens of surgeries, hospital stays and rare complications, our story is particularly
unique. At times I can barely believe it’s real when I say it out loud. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I created a private Facebook community a few years ago to
update friends and family on the status of my sons. It became overwhelming and
emotional to update each person individually and something very special grew
out of that community. We met other special needs families that have guided us
through the medical processes, we have received thousands of prayers, we have
been supported with meals and tangible help, but the best part was having a
safe place to be vulnerable and real about the extreme highs and lows of living
in a state of constant crisis. It also chronicled a story and timeline so I
could look back and remember that emotions are fleeting and when I’m in the pit
of despair, it will soon pass. That community has turned in to so much more
than I could have ever imagined. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Of course we have learned some hard lessons. While most of
our community has been loving, supportive, prayerful and completely empathetic,
there have been negative responses. It’s part of life and part of exposing
vulnerability. I recently received a hateful message from a former teacher that
I admired so much as a child. She accused me of having Munchhausen, a rare
mental illness where mothers fabricate illnesses and intentionally make their children
sick for attention. At times they even kill their own kids. The message said
many horribly hurtful things and despite knowing how off base it was; words
still hurt. No matter how much it may seem that our life is a made up soap
opera drama- for us it is our everyday reality. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The judgement trickles in and we are good at letting it roll
off our backs. Yet there is always a theme we hear. An underlying word that
seems to really bother people.</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">ATTENTION. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">“They are just talking about all of this for attention.” “Why
do they keep having kids? They can barely take care of their own.” “If they
really loved their kids they wouldn’t be keeping them alive.” “This is a burden
to your life.” “If it were my kids in the hospital, I would take it seriously
and not be going out to dinners.” “Other people have problems too and they don’t
try to get so much <i style="mso-bidi-font-style: normal;">attention</i> for it.”
</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Can we all do something right now? Let’s stop making
ATTENTION a dirty word. I remember a counselor told us once that the best way
to prevent PTSD is to openly talk about our experiences. Bottling it up is detrimental
to our health. Seeking attention means reaching out to your community and
allowing them to go past the surface. Every time you share a photo of your
children, shed a tear at your moms group, yell at your spouse that you feel
lonely, write a post on social media, raise awareness for a cause you care
about; you are seeking the direct focus of love and support. That is an
incredibly beautiful thing. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I have experienced some of the hardest things a mother can,
yet I desperately try to maintain happiness. I can only do this with constant
attention. I need attention when my husband wraps his loving arms around me. I
need my friends to come along side me and feel each triumph and pitfall as they
come. I need a virtual community to hear and encourage me as I share so many difficulties.
I need the attention and focus of others to recognize when I need space, or a
play date, or coffee, or a prayer, visit, meal, call to a congressman. I need
attention when I would rather be alone because spending too much time in
solitude while combating depressing and traumatic experiences is dangerous. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And friends. Fellow moms. Special needs families. Grieving
parents. I need you to know…</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">YOU HAVE MY ATTENTION.</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My eyes are on you. My heart is with you. I feel what you
feel. You will never feel shamed by me. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And by the way, if you need a new friend- I’m all yours. If
you need to dance on tables and need a cheering crowd- my voice will be the
loudest. If you need to fight your insurance company- my momma bear claws are
out. If you need to get stuff off your chest- vent away. Ask for my attention
and you shall receive. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">For those that look for attention to celebrate your joys and
embrace your sorrows, you are doing it the right way. Life wasn’t meant to be
done alone. Attention is a GOOD WORD. I’m proud to bring attention to my
beautiful life and feel honored that people have chosen to consider us. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Yes I am doing this for attention. Yes my sons deserve to
have their lives shared because they remind us to come alive and appreciate,
giggle and find beauty in differences.</span><span style="font-family: "calibri";"> </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<br /></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: "calibri";"></span>MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com4tag:blogger.com,1999:blog-4698202379335650559.post-14362855297976805392017-09-07T18:21:00.000-07:002017-09-07T18:21:26.048-07:00One Dreamer’s Story
<br />
<div style="margin: 0px 0px 11px; text-align: center;">
<i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">“You may say that I'm a dreamer, but I'm not the only one<br />
I hope someday you'll join us, and the world will live as one”</span></i><br /><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
-John Lennon</span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik30KOnvzHqCzMiH8SMOVu8Ztbg4ZojfcryluaCa6o5b9dRBRIz6jdm-GK5BKWDWM1PwCtLOhitj0oTPEYvJk4FlpWCvT2FvJz4flIzD-_3ZOA7Ep8ja5aE1cZF-Bu-Evxmc1VTQylng/s1600/IMG_6146.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik30KOnvzHqCzMiH8SMOVu8Ztbg4ZojfcryluaCa6o5b9dRBRIz6jdm-GK5BKWDWM1PwCtLOhitj0oTPEYvJk4FlpWCvT2FvJz4flIzD-_3ZOA7Ep8ja5aE1cZF-Bu-Evxmc1VTQylng/s320/IMG_6146.JPG" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif; font-size: small;">Our nurse, traveling with us to Flagstaff so we could take our son on his first trip.</span></td></tr>
</tbody></table>
<div style="margin: 0px 0px 11px; text-align: center;">
<br /></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I have a medically fragile son that requires around the
clock nursing care. My son’s day nurse has worked for our family full-time for
almost 2 years. She has become a back bone to our everyday life, and of course
we are very close with her. Here is part of her story. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<b style="mso-bidi-font-weight: normal;"><i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">What do you do for a
living?</span></i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> <i>What makes your job challenging and unique?</i></span></b></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I’m a pediatric home health nurse. I have had to save my
patient’s life more than 100 times. It happens almost every day because he is a
critical patient. I think I go above and beyond in my work because I’m very
emotionally attached to my patient. It’s more than a job to me and more than a
paycheck. It’s his life and I want to make sure he gets the most out of every day.
I like to challenge myself and him with everything from feeding skills to one
extra minute of therapy. I like helping him achieve those little goals. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<b style="mso-bidi-font-weight: normal;"><i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Where are you from
and how did you end up in the United States?</span></i></b></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I was born in Mexico City. I was brought here when I was 7
years old by my parents. My memory can only go back to the time we crossed the
desert. That’s when my life started. I don’t have memories of living in Mexico
and have only heard stories from my family. We walked 3 days and 2 nights in
the desert and I didn’t understand what was happening. My parents were scared
and I didn’t understand why we had to hide from cars and sleep outside under
leaves. I didn’t understand why we were walking and carrying our water. I remember
my dad telling me when we got there I could have an ice cream. I could never
have an ice cream in Mexico. I did end up getting the ice cream from a nice man
at the first McDonald’s we saw. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<b style="mso-bidi-font-weight: normal;"><i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Why did your parents
bring you here? Why didn’t they come legally?</span></i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> </span></b></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">My parents wanted me to have a better future. Initially they
thought they could just work, save money and return to Mexico. They never got
to go back. They saw I could have a better life here and didn’t consider the
obstacles I would face later in life. I have a 7 year old sister and a 17 year
old brother and they were both born here and are citizens. They have never been
to Mexico. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">There was no money or resources to come legally.
Financially, my parents were not in a position to afford a visa. If they were
in a good financial position, they would have never left their families,
community and where they were raised to find a better future. There was no path
to citizenship for them. There is no way to become a citizen by applying on your
own. It’s much more complicated than people understand. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<b style="mso-bidi-font-weight: normal;"><i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">What is DACA and how
did you become a recipient?</span></i></b><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">DACA is Deferred Action for Childhood Arrivals. It’s a
program that started in 2012 and you have to qualify for it. You have to have
arrived in the U.S. before the age of 16 and you also have to be less than 30
years old. There were many specific qualifications like background checks,
finger prints, listing every place we have ever lived, proving we were here
since we were 16 and that we had never left, we had to go to school and have no
criminal record. Once you were approved for all of that, it deferred you from being
deported. It also gave you the right to have a driver’s license. You pay a fee
of $465 ever 2 years for the permit and have to reapply after those two years.
The permit gives you the right to work here legally. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I became a recipient when I was 24 years old. Since I was in
college before that, I was not able to use a college scholarship I received. I
also had to pay out of state tuition in cash. I could not receive any state
benefits, scholarships or grants. I know people that were not able to qualify
for DACA. The qualifications are very specific and rigorous. My husband could
not qualify because he arrived here 6 months after he turned 16. It’s very
difficult to become part of the program. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<b style="mso-bidi-font-weight: normal;"><i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Do you pay taxes?</span></i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> </span></b></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Yes I pay taxes just like a citizen. My friends and family
that cannot work legally also pay taxes. They have an ITIN (individual taxpayer
identification number) that is similar to a social security number that is
issued by the IRS. If you don’t have a pay stub or W-2 you file taxes with a
specific form. Many people want to do the right thing. They want to live a life
just like everyone else. In a way, I think it makes them feel a part of the
community. It also gives them hope that they could become legal citizens. It’s
proof that they are “good” people and the only bad thing they did was come here
illegally for a better life. They want to prove that they follow the rules. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<b style="mso-bidi-font-weight: normal;"><i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Since you and your
family pay taxes, you must be able to receive benefits like a citizen correct?
Like financial aid, Medicare, etc?</span></i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> </span></b></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">No. With DACA, we are not allowed to use any federal money.
If we want to go to school, we have to pay out of pocket unless you get a private
scholarship. We cannot receive FASFA. My parents cannot receive Medicare and
have no health insurance. We pay into those programs, but cannot receive any
funds.</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Once I went to the emergency room because I had a traumatic
miscarriage and had to call 911. We got a bill for over $5,000. It was more
than I could afford. We avoid going to the doctor at all costs. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<b style="mso-bidi-font-weight: normal;"><i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Did DACA change how
it felt for you to live in the U.S.?</span></i></b></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Having DACA made me feel so much safer. I didn’t go places
without worrying about if I will return home. I felt different about myself. I
always had so many boundaries in my life and couldn’t build a future. I could
never consider what I wanted to be when I grew up. Having DACA made me feel
like an equal. Even though I had to pay more for school, I still had the same
chances for a job as anyone else. I always wanted to buy a house for my parents
to live in. Two years after receiving DACA, I was able to buy a house for my
family. I worked 2 jobs while in nursing school to buy the house. I would only
sleep on breaks during work but my employers were very supportive of my dream.
My restraints were gone and I suddenly got to break free. I was unstoppable. I
would say I had new hope for my life. Not only did I have hope for myself but also
for my siblings. I wanted the American dream for them as well. They had never
dreamed of living in their own home or a family vacation or going to summer of
camp. I had to help raise them in the summers so my parents could work. I was
walking on Cloud 9 for a long time. I gave them a home and took them to
Disneyland. People would ask me how I didn’t sleep for 3 years during nursing
school but I was so energized by my new life. My sister would always say she
wanted to be just like me. I know I have done well for them. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">*We take a break to cry. Our family, children and friends
are huddled around Miles's nurse to hear her story.*</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<b style="mso-bidi-font-weight: normal;"><i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">How does it feel to
know our President has ended the DACA program?</span></i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> </span></b></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It’s terrifying. It’s devastating to think what you have
been able to build in 5 years could be destroyed in 6 months. I’m beginning to
think, what will I do with my house? My career? Do I even have a future here?
What am I supposed to do? I don’t know if I should go back to a place where I
was born to do… who knows what? I wouldn’t know what to do there, what to look
for, how to live. Everything I know is here. I’m afraid my family will be split
up. </span></div>
<br />
<br />
<div style="margin: 0px 0px 11px;">
<b style="mso-bidi-font-weight: normal;"><i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">If you could educate
people on your situation, what would you tell them?</span></i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> </span></b></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I don’t believe we are taking away anyone’s job or
opportunities. We are not taking anything from Americans. Just because we are
getting a chance to be like other Americans, it opens doors for us, but doesn’t
close it for others. We all fight for who we want to become and who we want to
be. The fact that I work as a nurse does not mean I’m taking the spot from another
nurse. If they aren’t a nurse, it’s most likely because they don’t chose to do
that with their life. There is room for all of us. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<b style="mso-bidi-font-weight: normal;"><i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">What’s your plan now?</span></i><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span></b></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I don’t know what my plan is. It would be easier to answer
that in a sense of what I hope for. I don’t know what the future holds and
everything is uncertain. I’m hopeful that if congress doesn’t allow us to be
citizens, they let us continue to work and go to school legally. Without that,
there is no plan for me even though I would like to be a citizen so I could do
more with my life. But compared to having nothing, DACA is all I have. I don’t
mind paying for it if it’s the only option. It’s hard to have hope. Everyone
tells me to be optimistic and I really want to, it’s just hard to hope for
something that won’t happen. I don’t know if I can change any of this. I wish
there was something to hope for. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Would you or someone you know like to share their DACA story? Please contact me at allisonalefebvre@gmail.com</span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"></span>MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com1tag:blogger.com,1999:blog-4698202379335650559.post-88568928286092637062017-01-12T22:35:00.000-08:002017-01-13T05:17:05.497-08:00Caleb's City ICU Tour and a New Diagnosis<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIJjK6jBzVBEJ5MHiVuZIeCZRIBa6O7UbMM-tqV4bSLUU2AJwB-y0XSK0uzGCQFJcp3CYXlHEDaesvDZVUssq5kR_uKddRY9Ke_bMPddyV0JDAJtUHibZzqAfTLnmup_TJcidIRRg2aw/s1600/IMG_2503.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIJjK6jBzVBEJ5MHiVuZIeCZRIBa6O7UbMM-tqV4bSLUU2AJwB-y0XSK0uzGCQFJcp3CYXlHEDaesvDZVUssq5kR_uKddRY9Ke_bMPddyV0JDAJtUHibZzqAfTLnmup_TJcidIRRg2aw/s320/IMG_2503.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our first family photo. </td></tr>
</tbody></table>
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">have been a bit vague about things we have learned about
our baby Caleb lately, mainly because there have been a lot of differing
opinions. After I had Caleb, we spent 2 days in the hospital and he struggled
with hypoglycemia over the next two days. His blood sugar kept plummeting down
to 30 and they would tell us to just give him formula, which he hated and would
gag and vomit as we bottled it to him (my milk had not come in yet). My friend
had just had a baby and pumped for us. We snuck it into the hospital and would
syringe it into his mouth as he gobbled it up. Ultimately, this stabilized his blood
sugar. Now in hindsight, he would have benefited from some NICU time, but no
one even suggested it. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Also, when he was born, there was a big bubble of spinal
fluid on his back. This was not something we expected to see since he had fetal
repair, but no one said anything about it. No one even suggested we get an MRI
or ultrasound of his back or brain. We have since learned that Banner hospitals
had no neurosurgeons on call, so Caleb’s care fell through the cracks. This led
to a turbulent few weeks. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">We brought Caleb home and absolutely delighted him. I couldn’t
believe how perfect he was. He was jaundice and was struggling to gain weight so
we were at the pediatrician every other day, but this seemed simple to me.
After about 4 days home I began having a gut instinct- he was too sleepy, too
lethargic and too weak. We would strip him down and take him out in the cold
every 2 hours to wake him up to eat and he still wouldn’t wake up. He was like
a floppy rag doll. The pediatrician didn’t seem concerned but I know too much
about Spina Bifida and I had reason to be worried. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">After a visit to the Cardons ER and watching my tiny baby
get poked and poked and poked as they couldn’t get an IV or blood for hours, I
was beside myself. Finally, he was put on a pulse oximeter and in my arms when
I heard the all too familiar red alarms. The medical team came running in to
bag him. Was I really seeing this? It’s the wrong kid! This only happens to
Miles, not Caleb too. Bryce and I looked at each other with that look. Total
defeat. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Caleb was immediately admitted to the pediatric ICU and put
on oxygen. I watched him all night as his saturation levels dipped down too
low. The next day, he was put under general anesthesia and intubated for a 4
hour brain and spine MRI. For those that are curious, 4 hours is a long time to
be under general anesthesia, let alone a 9 day old that was born early. It’s unideal
for the developing brain. We had been told the MRI would be 1 hour. I paced the
halls waiting for him to return. He vomited all day as he tried to wake up. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">A fill-in neurosurgeon came in to read the MRI results to
us. Most of it was very familiar from Miles’s readings. Caleb has a severe
Arnold Chiari malformation. He has a spinal syrinx the entire length of his
spinal cord. The bubble on his back was news though. It wasn’t just spinal
fluid. It’s called an “incomplete repair.” Somehow Caleb’s spinal repair had
split open inutero and the spinal cord and nerves were bulging out of his back
like an unrepaired Spina Bifida child. I have never once heard of this
happening to a child who has already undergone fetal surgery. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">We were also casually told of some other very serious
diagnoses. First, he has Polymicrogyria. This is a condition I had never heard
of. The folds of the brain are too small and there are too many. Some children
don’t survive childhood. Some live with mental disability and lifelong
seizures. The other diagnosis was Heterotopia. That is where brain matter
exists in places it shouldn’t. The long term effects can be the same as the
Polymicrogyria. We were told not to google it and to consult with a neuropsychologist.
These are very serious things to hear on top of some already very serious birth
defects. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">We were sent home from the PICU with a pulse ox. That night
I watched Caleb sating in the 70’s and 80’s and I felt so helpless. I had no
oxygen for him and I would watch his little lips turn blue every couple
minutes. The next morning I called the pulmonologist with an urgent request for
oxygen. He didn’t call me back. I called the pediatrician to request caffeine
therapy to boost his brain stem and breath rate. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">“I’m very worried Allison. You shouldn’t be doing this all
by yourself. Caleb needs a baby doctor. He should be in the NICU.” I knew our
pediatrician was right. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Within a couple hours we were being admitted to the
Scottsdale Shea NICU in an isolation room since Caleb had already been home. He
was on oxygen but still did not seem like a thriving child. After about 3 days,
my friend was at the hospital with him so I could go shower. That’s when I got
the call that Caleb had tested positive for a UTI and was being emergency
transported to Phoenix Children’s Hospital NICU. I rushed back to the hospital
to find them attempting IV’s on him. After I watched them miss and blow 5 IV
veins and 2 blood draws, they finally did a blood draw out of his artery. I
have had this done and it’s incredibly painful. I have never seen a baby scream
like that. I put my foot down and said no more IV attempts. So then they gave
him two antibiotic shots in his thighs. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">As I was in the ambulance taking him to our 4</span><sup><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: small;">th</span></sup><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">
hospital in 2 weeks, I was trying to process why all of this was happening over
a borderline UTI. No one explained when I asked so I did my own research. The barriers
between urine, blood and spinal fluid are very weak in a newborn. An infection
can quickly spread and turn into meningitis. They wanted him at a hospital that
had neurosurgeons in case they did a spinal tap and Banner still had no
neurosurgeons available. Even though our insurance doesn’t cover PCH, we had no
choice. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">We spent the next 8 days at the PCH NICU, which they are self-proclaimed
in “the armpit” of the hospital and they aren’t kidding. The unit was gross. PCH
PICU is pristine and I would have much rather been sent to that unit. Caleb was
aggressively treated with 4 different IV antibiotics. The night we arrived, it
took them 3 more tries to get an IV since Shea had blown so man veins. It was a
horrible day. Thankfully, he responded quickly and was able to come off of
oxygen (although he still has episodes of desaturations). </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">One we got home we immediately followed up with our
neurosurgeon and he confirmed that Caleb will need another Spina Bifida back
repair. He may also need a shunt in his brain soon. The Polymicrogyria and
Heterotopia are present but we were told we can worry about that later. My
world crumbled as I realized so much of the fetal surgery was done for nothing.
Months detached from my family, tremendous pain, tens of thousands of dollars-
all to spare my baby from what he will have to go through anyway. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">John 10:10 says, “The thief comes to steal, kill and
destroy. I come that you may have life and have it abundantly.” </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The enemy has been so relentless on my family. He stole precious
time with my boys. He killed our hope and he destroyed the people we once were.
He won’t let up on us. We have to decide now if we get Caleb’s surgeries in
Phoenix or Houston. If Houston, we have to wait several months until we can get
new insurance. I don’t know if he has that kind of time. We also don’t know how
we can care for Miles when his nursing hours are cut back this month. It feels
as though we have to choose between our boys. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Thank God for the second half of that scripture.</span><span style="font-family: "calibri";"> </span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com5tag:blogger.com,1999:blog-4698202379335650559.post-61023878325005491082016-12-06T13:52:00.000-08:002016-12-06T13:57:04.147-08:00Fetal Surgery Week<span style="color: #0066cc;"></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS1Mx9Q_tRQnJeFiOK6ZqsAzom-ZQDwucyT4YNV59X-aCKt7V4kbgn_2GpZQ9uJOiRXM2YSDwJEumgxBdz_jaQnChSNgzdOY1MUIi5zrr-udE5225b7bz9be4RnL7uzie_9KzT31BWEA/s1600/IMG_1600.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS1Mx9Q_tRQnJeFiOK6ZqsAzom-ZQDwucyT4YNV59X-aCKt7V4kbgn_2GpZQ9uJOiRXM2YSDwJEumgxBdz_jaQnChSNgzdOY1MUIi5zrr-udE5225b7bz9be4RnL7uzie_9KzT31BWEA/s320/IMG_1600.JPG" width="240" /></a></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: "calibri";"><br /></span></div>
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">There were a lot of conversations the night before surgery.
I was admitted the day before since the team was anxious about my Diabetes
management and wanted to go over everything in detail. I met with several
anesthesiologists. Some made me feel comfortable, some made me feel more
anxious. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">“What if my body is paralyzed but my mind stays awake and I
can feel and hear everything throughout the surgery?” I asked the question
mostly joking but I had some irrational fears. Expecting to be laughed at, the
resident anesthesiologist responded.</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">“Yes that does occasionally happen where people report that
they remember their entire surgery. Anyway, let’s talk about tomorrow.”</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">“No, I’d like to revisit what you just mentioned…”</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I don’t think you can ever feel fully prepared going in to a
surgery like this. One where you have been repeatedly told that the recovery is
extraordinarily painful and your child may not survive, or you may not survive.
One where you are only their 40</span><sup><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">th</span></sup><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> case in the last 6 years because
it’s such a rare procedure. Where you are the first insulin dependent diabetic
in the world to be getting the surgery so they are going to do things
differently than usual. No matter how brave I felt, I didn’t sleep the night
before surgery. </span><span style="margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"> </span></span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My surgery was delayed a couple hours in the morning because
of another neurosurgery. Bryce and my mom were with me and the room seemed
quiet and tense. Bryce came over to me and I started crying. I felt like no one
was encouraging me or really acknowledging me. He got the picture and painted
my nails bright pink. There was a lot of laughter seeing him attempt a
manicure. During my manicure, a huge group of people came in to prep me. Bryce
and mom had to leave the room so my epidural could be placed. The goal is to
insert the epidural catheter before surgery. Toward the end of the surgery,
they inject the medicine so when you wake up you feel no pain for the next 48
hours. The doctors kept reminding me that if I feel anything at all when I wake
up then there is a problem. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">As the doctor was stringing the catheter into my spine, I
passed out. I’ve never done that before. Thank goodness a nurse was in front of
me to catch me and lay me on the bed. I kept apologizing as I woke up and they
assured me it’s pretty common because people have a drop in blood pressure during
procedures. It was more of an exciting start than I had hoped for. Everyone was
brought back into the room and it seemed like there were 100 people in there. I
was given something to relax me and my memories got foggy as I was wheeled down
to the OR. I do suddenly have vivid memories of being in the OR as they asked
me to move over to an operating table. I lost count of how many people were in
the room at that point but I already knew that over 25 people would be there
for my surgery. The doctor put a gas mask on me and said I would be asleep
soon. I felt very alert. I was looking around the room at taking everything in.
It seemed like a minute passed and I grabbed the doctor’s arm. She removed my
mask. “Why am I still awake?” I asked. “You will be asleep soon,” she assured
me. That’s the last thing I remember. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">During fetal surgery, I am placed in a very very deep level
of general anesthesia. Not only do they need to put the baby to sleep but my
uterus needs to be completely relaxed. My surgery was about 2.5 hours and went
well. Caleb’s portion of the surgery was about 25 minutes while most of the
time is spent cutting me open, removing my uterus and positioning it, cutting
it open to expose Caleb (first he needed to be flipped from his back to his
tummy), and eventually piecing my body back together. Caleb was measuring 1
pound 11 ounces the day of the surgery. The team updated Bryce through the
ordeal and also text him pictures of the surgery throughout. My blood sugar
stayed perfect the entire time. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I woke up in the recovery room in excruciating pain. I don’t
remember saying much other than, “Pain, pain.” I remember people running around
and the anesthesiologist team coming in to redo my epidural. I have no concept
of how long that took but once it was working, I was a happy woman. We weren’t
sure why my epidural didn’t work initially. I was told maybe the catheter
migrated. I was given high doses of magnesium sulfate to prevent labor. All
fetal surgery moms talk about this drug. It makes you feel incredibly hot, nauseous
and terrible. It is very similar to having the flu. We kept the room at 55
degrees and it was intolerable to everyone but me. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Here is where the story gets interesting. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Around 1 am, I woke up in a panic. I could feel my epidural
rapidly wearing off and all my feeling came back instantly. I began sobbing and
Bryce woke up. I can only describe the next 3 hours as a scene out of The Exorcist.
Since it was the middle of the night, the fetal team was gone and they suddenly
had a fetal surgery patient with no painkillers on board and no working
epidural and no orders written. Bryce, my mom and my nurse spent the next few
hours trying to get the on call anesthesiologist to redo my epidural but he
didn’t seem to believe it wasn’t working. The nurse kept pushing Morphine in my
IV which did almost nothing. I could not wish pain like that on anyone. Every single minute felt like an hour. Bryce
called a fetal surgeon on his cell phone in the middle of the night which the
surgeon did not like, but he asked to speak with me. The second he heard my
sobbing, he was giving the anesthesiologist a piece of his mind. I remember
begging and pleading, sometimes to Jesus, sometimes to the doctor. I asked them
to put me under. After two attempts at redoing the epidural, I was numb again. It
was the longest 3 hours of our lives. There is nothing I couldn’t endure after
that. Bryce was scheduled to fly home the next morning to be with our boys.</span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">“Please don’t leave me,” I begged him. “I already moved my
flight to Friday.” </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">We all fell asleep and exactly 2 hours later, I woke up to
my feeling coming back again. </span><i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">No, this
can’t be happening</span></i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">. I called for the nurse and more anesthesiologists came
in, continually bolusing my epidural. “You should be paralyzed,” they would
say. “Do you need proof?” I would cry hysterically. I’ll stand up and run
around this room if you need proof!” </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This time, they knew something wasn’t working right and they
put me on a drip of Dilauded. I had never heard of this drug before but now I
kindly refer to it as “my day on heroine.” It is essentially medical grade
heroine and only used in extreme situations for pain. It wasn’t ideal for
Caleb, but we had no choice and of course I would accept any relief. I barely
remember the next 24 hours and I was hallucinating and could not hold a
conversation. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My remaining couple days in the hospital consisted of more
pain as I came off the drip, starvation, vomiting, enemas, and attempting to
get up for the first time on day 4. My blood pressure ran dangerously low the
whole week, around 55/30. It’s from the combination of drugs being given.
Trying standing up after 4 days with blood pressure that low is…eventful. I was
also not allowed to eat food or drink water for 4 days since the Dialuded was
making me sick. If you wanted to see a hangry person, you should have visited
room 544. The second they said I could eat, I went straight to a BLT. Also not
a smart idea. Broth would have been a better choice. </span></div>
<br />
<div style="margin: 0px 0px 11px;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My amniotic fluid levels were at a 3 (normal is above 10),
but this is expected after surgery. I could feel every movement that Caleb
made, tenfold. I also could tell he was in pain. He thrashed around like I had
never felt before. It was heartbreaking because there was nothing I could do.
Doctors seemed happy with our recovery and discharged me on day 5. They don’t
want you sitting in the hospital waiting for a blood clot but it did seem early
to go home. As I was being wheeled away from my room I pointed out if I were to
ever be in this much pain for any other reason, I would be heading TO the
hospital not AWAY!</span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGthAx2TZwHCM1NO9jEHNs-HxPlShdztNcWfGKTlJ5XfxCvfbs86YG5H_QpvM5cUhyphenhyphenuURUm5YRuLzL8xKW_qwAMWBvO_0L-0ThyAcAcHtDx-O11xevOFNsXIUoKZP62sBw-POUlqwLXg/s1600/IMG_1453.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGthAx2TZwHCM1NO9jEHNs-HxPlShdztNcWfGKTlJ5XfxCvfbs86YG5H_QpvM5cUhyphenhyphenuURUm5YRuLzL8xKW_qwAMWBvO_0L-0ThyAcAcHtDx-O11xevOFNsXIUoKZP62sBw-POUlqwLXg/s320/IMG_1453.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last pregnancy pic pre surgery</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgohazUXLCYW6vxXd0igFUWpQt3oY6AxfPtx2C3vPf0oxz3xhZzKnPQ7mN3KSZpN3qoPsXwa7d6-l0jm8thy-hgTNORaFzx8V-_owbutvkYhg6g7jwMVGuerZQt4W5vzmWtEAZUip6VLw/s1600/IMG_1457.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgohazUXLCYW6vxXd0igFUWpQt3oY6AxfPtx2C3vPf0oxz3xhZzKnPQ7mN3KSZpN3qoPsXwa7d6-l0jm8thy-hgTNORaFzx8V-_owbutvkYhg6g7jwMVGuerZQt4W5vzmWtEAZUip6VLw/s320/IMG_1457.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Right before surgery</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh61EM3L1wzPLVK4dA3BT-LYlIuzYPbpGP02u7LvAkUeaMRTipmwRSexTkBsmZGWV48i64eHQasSdk62oOeOWx5U6oOQHz7qeaEEXhn3nblaaAf9c_bEI8tvvnMJPcV8UYjaiIFLBtGpQ/s1600/IMG_1567.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh61EM3L1wzPLVK4dA3BT-LYlIuzYPbpGP02u7LvAkUeaMRTipmwRSexTkBsmZGWV48i64eHQasSdk62oOeOWx5U6oOQHz7qeaEEXhn3nblaaAf9c_bEI8tvvnMJPcV8UYjaiIFLBtGpQ/s320/IMG_1567.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting to get checked in</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSDK8UBsPkxvIZ8KR3q4q1FF7-Kv9JBF17QQVeBYu06O8vyuYwXwVU4PNXUrSosmnH0rK-f2kWNuvRIrJCAsRMLybolz5KWU6nWnBjv3eUF_GCGhxY6ttywsOHOWgCmKHPpUTS5fsWLw/s1600/IMG_1570.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSDK8UBsPkxvIZ8KR3q4q1FF7-Kv9JBF17QQVeBYu06O8vyuYwXwVU4PNXUrSosmnH0rK-f2kWNuvRIrJCAsRMLybolz5KWU6nWnBjv3eUF_GCGhxY6ttywsOHOWgCmKHPpUTS5fsWLw/s320/IMG_1570.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Papanna</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinDGEDvZjGLgQHhdwXQgAING4fpPVZrXmlPFW67DG1OpviF3qFhm1dUMtRTXpo9y3iQhnHXysP8Fxb1z8A4bnkEv2VA7MSoRrK6MQkkw4qSHy8jJeU_4clN84QSDd3kyIzJ6K5SyYxzw/s1600/IMG_1572.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinDGEDvZjGLgQHhdwXQgAING4fpPVZrXmlPFW67DG1OpviF3qFhm1dUMtRTXpo9y3iQhnHXysP8Fxb1z8A4bnkEv2VA7MSoRrK6MQkkw4qSHy8jJeU_4clN84QSDd3kyIzJ6K5SyYxzw/s320/IMG_1572.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Diabetes Talk</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVAd_8GCocVhAURua7B6ia2-mKzSMa1Tn0pU-DRDnGPr4hmTmbzA9WJNcdlQDt2aCNKylvuDSpCrSI0yJ90loFp7fx3nyGpLSp7DEFvNtRPwr8tH0nPKAD9rIvKB0mKpkOhGLoLryuWw/s1600/IMG_1573.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVAd_8GCocVhAURua7B6ia2-mKzSMa1Tn0pU-DRDnGPr4hmTmbzA9WJNcdlQDt2aCNKylvuDSpCrSI0yJ90loFp7fx3nyGpLSp7DEFvNtRPwr8tH0nPKAD9rIvKB0mKpkOhGLoLryuWw/s320/IMG_1573.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Moise and Dr. Snowise</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaJuwI6TtqwFdDRvAVllbPTbkDt1ohqiRJe_yZW2dl_FfsPmghvA-8zuPAhBapkIbiSR2IwPibzXyQ4tbj2JehGzRDz5x0wvL37_Wbs9QAX7hZ30ElLO6Pxobki7SpqdzGQXiD5kT4hw/s1600/IMG_1576.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaJuwI6TtqwFdDRvAVllbPTbkDt1ohqiRJe_yZW2dl_FfsPmghvA-8zuPAhBapkIbiSR2IwPibzXyQ4tbj2JehGzRDz5x0wvL37_Wbs9QAX7hZ30ElLO6Pxobki7SpqdzGQXiD5kT4hw/s320/IMG_1576.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Final walk through the halls</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJNWIEAHW8OaNn1H2v6D970qRA8q5oLdEbio3wHkZLiiMavcgm47RMA5IxBa94RotqPgbhrRXVbeMUbI96cHFsLWE6mTWf_Ly3E1SAKWRUSPRsOD1NrUBIgVQtwEqxuTIQJrc3uHj4TQ/s1600/IMG_1582.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJNWIEAHW8OaNn1H2v6D970qRA8q5oLdEbio3wHkZLiiMavcgm47RMA5IxBa94RotqPgbhrRXVbeMUbI96cHFsLWE6mTWf_Ly3E1SAKWRUSPRsOD1NrUBIgVQtwEqxuTIQJrc3uHj4TQ/s320/IMG_1582.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Netflix and Chill</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEspinBzWafFRBZdIzjK3hoCwS1P5nhqA2hn3y4wnR_MYMXuSElPMbMrkQuDaEQr2jLSIsJZe_EO2EfUAwiTzdAsv6FlK7ocoLt9zErl432SKDu7hz6I47eb_FCDPyJGDBtF1531Wb6w/s1600/IMG_1583.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEspinBzWafFRBZdIzjK3hoCwS1P5nhqA2hn3y4wnR_MYMXuSElPMbMrkQuDaEQr2jLSIsJZe_EO2EfUAwiTzdAsv6FlK7ocoLt9zErl432SKDu7hz6I47eb_FCDPyJGDBtF1531Wb6w/s320/IMG_1583.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Next to Miles, I'm the hardest IV stick</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBG-fEHsBYFQITOrOk5Y9OqemeRtHCW0p56Qg_5fywbn1bm0VBO5WNbJHEOeDX-VYRnQS78F8EDcO8ww4nJQHtu_3DlBdE0FTx6u-PZMAZXjD6gvfvymTslzp0bphfUnfqgRamewRjwg/s1600/IMG_1591.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBG-fEHsBYFQITOrOk5Y9OqemeRtHCW0p56Qg_5fywbn1bm0VBO5WNbJHEOeDX-VYRnQS78F8EDcO8ww4nJQHtu_3DlBdE0FTx6u-PZMAZXjD6gvfvymTslzp0bphfUnfqgRamewRjwg/s320/IMG_1591.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Card reading and nail painting</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzCu5kokmLZX2Uieo-RWrUVP6jNZ0JNK6UOvB7C7K5-I6eg3pMl-1UeINhOEBgQOUySTGCCIzdzICFKhQbOd7X7LyYYlg2NqPu9ROx9z8w-imBeCmtC-uU0QxZ5M6CIuTmL8D-FEDt4Q/s1600/IMG_1596.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzCu5kokmLZX2Uieo-RWrUVP6jNZ0JNK6UOvB7C7K5-I6eg3pMl-1UeINhOEBgQOUySTGCCIzdzICFKhQbOd7X7LyYYlg2NqPu9ROx9z8w-imBeCmtC-uU0QxZ5M6CIuTmL8D-FEDt4Q/s320/IMG_1596.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Fletcher, Neurosurgeon</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiOg3I-jIKvTbz_6KPt8yPX3DzmSH8OsjSWTX1NjvpEstkgt3a6j8SGr7D_mYHIX1WsHv7YvMx5ZrU7XAhTIcLz2efnRp-sSkQglxYtf3KX5r4-EmH3p302p9Kp4K1FPbLE3H8delWDw/s1600/IMG_1602.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiOg3I-jIKvTbz_6KPt8yPX3DzmSH8OsjSWTX1NjvpEstkgt3a6j8SGr7D_mYHIX1WsHv7YvMx5ZrU7XAhTIcLz2efnRp-sSkQglxYtf3KX5r4-EmH3p302p9Kp4K1FPbLE3H8delWDw/s320/IMG_1602.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Tsao, our favorite</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeVkpPvI7R2KS84PvVv_Ybo6hO5RsDMdqg8zQ68_KqOLRJAQuOVEv0A2bgSNM_RfowOmUQaQWUWbJpCkJ9R24vreg3ldXHXyLpi0U1QHBeM7Nu2sb6yJnHAthypCLpJxg6CJgDDk82qQ/s1600/IMG_1606.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeVkpPvI7R2KS84PvVv_Ybo6hO5RsDMdqg8zQ68_KqOLRJAQuOVEv0A2bgSNM_RfowOmUQaQWUWbJpCkJ9R24vreg3ldXHXyLpi0U1QHBeM7Nu2sb6yJnHAthypCLpJxg6CJgDDk82qQ/s320/IMG_1606.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being sent into the Operating Room</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcHBl4oBPm53WerhtsvWP6AX1QK2D_lbs9P6VwNEuorDoYrBEpboHJ6tZVjUXk-pQIPO2u7b7OFz_8b8o0yWwbI8NN3WlQba1ihPtun6QziGaV2tQW7Sn3E6P8xdwL3IPDcKG_iN_ajQ/s1600/IMG_1609.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcHBl4oBPm53WerhtsvWP6AX1QK2D_lbs9P6VwNEuorDoYrBEpboHJ6tZVjUXk-pQIPO2u7b7OFz_8b8o0yWwbI8NN3WlQba1ihPtun6QziGaV2tQW7Sn3E6P8xdwL3IPDcKG_iN_ajQ/s320/IMG_1609.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting for a new epidural after surgery</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw0NrrLwTiydO-uoAX5ODo0keHZAldU_GRQmPK_iiudetGZX8hSwA20R3ggIybT_F5a2oyYgvO3GXNvkIK0_-qqf7GuOZxbD0wkYUkEHi3hv5ttSKejZ1kjMomfbF8G-cSQ-xKqeMAAg/s1600/IMG_1616.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw0NrrLwTiydO-uoAX5ODo0keHZAldU_GRQmPK_iiudetGZX8hSwA20R3ggIybT_F5a2oyYgvO3GXNvkIK0_-qqf7GuOZxbD0wkYUkEHi3hv5ttSKejZ1kjMomfbF8G-cSQ-xKqeMAAg/s320/IMG_1616.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We couldn't get me sats above 80- oxygen time</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy_hakG0tatTLzYo_tgFJXXsPIXSxI0D6b8XuFyfUoBPpLO2WbrZ56LctdidkwkaeNPMD6ab1MfNKrKBcAVkEmVyRaMDwuAtH0n-9Si4EfBvpV-suQWd8bJaCwyIV6cp1nJfYxQKfZGg/s1600/IMG_1623.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy_hakG0tatTLzYo_tgFJXXsPIXSxI0D6b8XuFyfUoBPpLO2WbrZ56LctdidkwkaeNPMD6ab1MfNKrKBcAVkEmVyRaMDwuAtH0n-9Si4EfBvpV-suQWd8bJaCwyIV6cp1nJfYxQKfZGg/s320/IMG_1623.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Painkillers make you smile</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi480fdkF07BhV6ZXQ1xekyR57Wa6qbsMc-YQXOiC2j1HnEDJGOg8-8XMk-1ketMUHkYv7sOFdgM1SoFX3ZwSEGx1R6THCS_wm6ZrLHbTyqramehtoLh46IWbdXvbupveXntrbURkow3g/s1600/IMG_1628.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi480fdkF07BhV6ZXQ1xekyR57Wa6qbsMc-YQXOiC2j1HnEDJGOg8-8XMk-1ketMUHkYv7sOFdgM1SoFX3ZwSEGx1R6THCS_wm6ZrLHbTyqramehtoLh46IWbdXvbupveXntrbURkow3g/s320/IMG_1628.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We stood up, then immediately back down</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK14BgmNWebyzHc1Z3f8AEOO_FoWQsQRxxjjfTwJ7SPy7-J_W_3c6NZsLaKJng0v_OadB1SILNInXMLoXfpr3G4FlJ-90pPNTtL_8HzMuWuHfhh5cpmY2hW-XzPBfxKlrf9qvWB-C5Lw/s1600/IMG_1639.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK14BgmNWebyzHc1Z3f8AEOO_FoWQsQRxxjjfTwJ7SPy7-J_W_3c6NZsLaKJng0v_OadB1SILNInXMLoXfpr3G4FlJ-90pPNTtL_8HzMuWuHfhh5cpmY2hW-XzPBfxKlrf9qvWB-C5Lw/s320/IMG_1639.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First shower, heaven</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyU9L-T4jCKG4H0cQ3zC7znzsgYjwj1p93pMTsUhzR-PoWOo2n9bk0qx-NVYpZBrC-NxI0euJEuuFWKOkpEyUb-D6YA1-geMEpD5wCGN7ldpat3hHMPgv7erGbO1stBfj0L5VCHj2d2A/s1600/IMG_1646.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyU9L-T4jCKG4H0cQ3zC7znzsgYjwj1p93pMTsUhzR-PoWOo2n9bk0qx-NVYpZBrC-NxI0euJEuuFWKOkpEyUb-D6YA1-geMEpD5wCGN7ldpat3hHMPgv7erGbO1stBfj0L5VCHj2d2A/s320/IMG_1646.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He hadn't slept in a week</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF7nZxqGuBXdJ5dCBpuKADGwpLWTXP8Xhy1Dl2oG2DR4sFkxomOrtAmhARQFgLy2jiICo7L6ywkObaMSwjM3zOGAuk1ritidhOCJ1ZxR3XCweivFmOPK0tbdU9GsCbspa5_kqt0BGfww/s1600/IMG_1648.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF7nZxqGuBXdJ5dCBpuKADGwpLWTXP8Xhy1Dl2oG2DR4sFkxomOrtAmhARQFgLy2jiICo7L6ywkObaMSwjM3zOGAuk1ritidhOCJ1ZxR3XCweivFmOPK0tbdU9GsCbspa5_kqt0BGfww/s320/IMG_1648.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christina had the same surgery the week before</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6CtvuvSyh5QoabO6JCRHy1pAmRqG3c8VGImz3eUeeiBCjURjhKTDP9vVZECUp_wOC8bcicIKcPc-lT-p2oL_TgX2acMr_CtRq9zUjSkHYiRb78lX9yfzrKOoD7y0MC_BoYJ08RRGUqA/s1600/IMG_1649.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6CtvuvSyh5QoabO6JCRHy1pAmRqG3c8VGImz3eUeeiBCjURjhKTDP9vVZECUp_wOC8bcicIKcPc-lT-p2oL_TgX2acMr_CtRq9zUjSkHYiRb78lX9yfzrKOoD7y0MC_BoYJ08RRGUqA/s320/IMG_1649.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jess flew in just to be there</td></tr>
</tbody></table>
<div style="margin: 0px 0px 11px;">
<span style="font-family: "calibri";"><br /></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com0Houston, TX, USA29.7604267 -95.369802828.8787477 -96.6606963 30.6421057 -94.0789093tag:blogger.com,1999:blog-4698202379335650559.post-78946721437678648362016-09-27T02:51:00.001-07:002016-09-27T19:11:21.093-07:00Dear Caleb- Fetal Surgery Day<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSTiyvBwFVBX-JlEhZLct6qfKL36QeQkzhKd8G4JpE2LXkJtStx1ye7PCfn6HNH8ncIVQNDRH2UEO9jwfzBJxrOdOH8Vre0lz4-3hK7WexxpN3Ax3zN-IbBe3YYRw1sXrd1lIIHz-FbQ/s1600/14470385_1109608352453346_4347020867913293335_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSTiyvBwFVBX-JlEhZLct6qfKL36QeQkzhKd8G4JpE2LXkJtStx1ye7PCfn6HNH8ncIVQNDRH2UEO9jwfzBJxrOdOH8Vre0lz4-3hK7WexxpN3Ax3zN-IbBe3YYRw1sXrd1lIIHz-FbQ/s320/14470385_1109608352453346_4347020867913293335_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy and Caleb</td></tr>
</tbody></table>
<br />
<br />
My dear sweet son Caleb,<br />
<br />
I am focusing right now on our team. Me and you, you and me. You have helped me along the way in making the hardest choice of my life; to risk so much for something so uncertain. You never made me make the decision alone. You remind me daily of your strength as you kick and punch me stronger than your brothers ever did. I also know you are a jokester. Once the monitors are on you, you persistently dance away from them so nurses have to chase you around. All along the way, you have reminded me that you are going to be ok and have even comforted me through my fears by giving me a tickle when I'm feeling vulnerable.<br />
<br />
You are such a good son Caleb. I desperately want the best life for you, yet you are so much more than how well your spinal cord functions. You are a son of God and a gift to me and daddy. There is nothing sad about your diagnosis because I already know that the blood that runs through those tiny veins holds an interesting, strong and brave little man. A third brother to make us a laugh at the dinner table. A son that will wrap his arms around my neck and tell me he loves me. A future husband to a wonderful woman who will know she has met someone very special.<br />
<br />
There is absolutely nothing in this world I wouldn't do for you and if I never get to meet you on this side of life, I still feel you completed me as a mother. You stretched me harder than I thought I could go, crashing me into life scenarios that pushed me right into God's arms where I belong. I'm so lucky you found me fit enough to be your mommy. I will never take this opportunity for granted. I've spent my life saying I would take any amount of physical pain to relieve the emotional pain for my children. I hope that's what I'm doing for you today.<br />
<br />
Don't worry my love. You may feel a little scared or hurt or not completely understand why this is all happening today but I'm right here with you. I hope to take the worst of it away so you can get back to healing and growing and cracking me up like you so often do. I will keep you safe, no matter what it takes. You never need to thank me for this. Just please love your future kids the same way. Don't let fear dictate your choices for them, but the peace and presence of our Heavenly Father.<br />
<br />
It's going to be ok son, I promise. Weston, Miles, daddy and me are all waiting for you. Just do your best and you will have made me the proudest momma in the whole world. When we have bad days during this, we are in it together and you will always see a twinkle in my eye as you look at me through life because I'll never forget this special bond we created. We are so lucky Caleb. No, I'm lucky because I have you. We are after the same rainbows end my baby.<br />
<br />
Love, MommyMiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com3tag:blogger.com,1999:blog-4698202379335650559.post-39777221228168190252016-09-25T19:46:00.000-07:002016-09-25T19:46:29.185-07:00Fetal Surgery- It’s Only A Day Away
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2rpehh0_bFkMtqCNR8Ef20qxIio2SsSJnoQKc232MdDD3YAEBFZy53c1ItxuFbmLhWwCIvKLj5bJQcNWW9KD-SgZKJZCdy_YbQOXAzhWySJoIa8Y-n-T-DOZhaTRz3WOcJYsOV2fZtQ/s1600/IMG_1437%255B1%255D.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2rpehh0_bFkMtqCNR8Ef20qxIio2SsSJnoQKc232MdDD3YAEBFZy53c1ItxuFbmLhWwCIvKLj5bJQcNWW9KD-SgZKJZCdy_YbQOXAzhWySJoIa8Y-n-T-DOZhaTRz3WOcJYsOV2fZtQ/s320/IMG_1437%255B1%255D.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dinner with Mom at Cyclone Ayana</td></tr>
</tbody></table>
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;">It’s my last
day of true freedom. It’s all hitting me. I started dry heaving as I walked
around Houston with my mom today. It’s funny what nerves will do to you. </span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;">Here’s the
plan friends. I spent three days last week in the hospital at Memorial Hermann
Children’s for my steroid shots. No one was with me so I was bored and
basically just ate too much gross hospital food and had heart to hearts with
the nurses and doctors. The highlight was I got to meet the mom who had fetal
surgery for Spina Bifida on her daughter last Tuesday. We had been speaking
online and her room was right down the hall from me. I went to see her every day
and she tried to smile and grit through some serious pain for my sake. I’m
seeing so much bravery in the women that go through this. It was fascinating to
see someone experiencing this just one week ahead of me. Please pray for
Christina and her daughter, Haven. She has been a big support to me.</span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;">My mom flew
into Houston yesterday night so we got to have a girl’s day. We grabbed some
Tex Mex for dinner and have relaxed in the comfort of our hotel room. I called
one of the surgeons on his cell phone today with a few more questions because
as we draw near to the surgery, more fears are arising. There are a few things
they are doing differently with me because of my Diabetes and it always makes
me nervous to have to go outside the box. For instance, they want to do quick
blood draws on me to test my blood sugar during surgery so they are doing an Arterial
IV line. They said these are painful and if someone accidentally puts IV drugs
into an A Line, there is tissue damage and can even lead to amputation. Please
don’t make that mistake medical staff! I’m putting so much trust into
strangers. </span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;">Bryce flies
into town tomorrow morning and I am getting admitted to the hospital around 11
am tomorrow. There are still more meetings and conferences to have with the
doctors. The team has still not agreed on whether to cut my incision
horizontally or vertically. There is some big debate on this. They are also
deciding if they want to learn how to use my insulin pump during surgery or to
move me to an IV drip of dextrose and insulin. Everyone is very nervous about
my Diabetes control during the surgery and days to follow, including me. </span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;">Tuesday
morning, I will be prepped and heading for surgery by 7 am. My mom or Bryce
will keep you all updated on the status. The surgery is generally 3 hours but
Caleb’s defect is more involved so they said it could be longer. I’m really
hoping to wake up to good news. All I want to hear is, “Everything went to
plan.” Words like that have become music to my ears the last couple years. The
following few days after surgery will be very difficult.</span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;">I talk to
moms all the time that have experienced this surgery and there is one common
theme they discuss: pain. There is no denying this is one of the most painful
things to go through. Unless someone has done a lot of research on fetal
surgery, they have no idea the magnitude of it. Most doctors don’t fully
understand. What makes it unique, is they do such an invasive procedure, cut
your uterus in a very unsafe spot, and once sewn back up, your baby is in a
rapid stage of growth. Most women deliver between 30-34 weeks because something
emergent happens in their pregnancy. The luckiest ones make it to 37 weeks. My
C-Section is scheduled for December 18. </span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;">I told the
doctors that people keep comparing this to the pain of their C-Section or
hysterectomy. They all look at each other and laugh and say they would compare
this to going through open heart surgery, though probably more painful. Not to
mention the intent of the surgery. My baby is having neurosurgery and he has to
heal in my womb. They told me a C-Section will be the easiest thing I go
through after fetal surgery. Ok I get it guys…this will hurt! </span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;">There are
25-30 doctors in the room to perform the surgery so in that sense I feel incredibly
taken care of. With that many smart people in a room to keep Caleb and me
alive, I know they will do a great job. Once surgery is over, there is a long
road ahead. The goal from then on out is to stay pregnant as long as possible.
Mothers say each day they get closer to their due date they feel so relieved.
Most start celebrating when they make it 30 weeks! I will spend about a week in
the hospital and then I’m moving into an apartment next to the medical center.
I’m hoping after a few weeks there I can return to Phoenix, but it all depends
on my recovery. My mom and mother in law will trade off caring for me. Bryce is
going home the day after surgery to be with our boys and return to work. I wish
he could stay with me longer. </span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Arial, Helvetica, sans-serif;">Fetal
surgery is so rare that it’s hard for most people to relate to. I’m so grateful
to the moms I have met that have had it and the candid advice they have given
me. It makes me feel less alone is this crazy experience. The love and support
we received during my pregnancy with Miles ran wide. But I would say the
support for Caleb has run deep. Friends, family and total strangers have
invested their whole hearts into this experience. There must have been dozens
of people involved in arranging care for my boys while I’m gone. This has
undoubtedly been a community effort. Oh Caleb, how you have been loved before
anyone could ever meet you!</span></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-size: 12pt; line-height: 107%;"><span style="font-family: Calibri;"><span style="font-family: Arial, Helvetica, sans-serif;">If you are interested
in learning about fetal surgery, there is a PBS documentary on Netflix called, “Twice
Born- Stories From The Special Delivery Unit.” It has several parts and follows
a few stories, so to save time I would recommend following the mother, Shelley.
Her daughter is having fetal surgery for Spina Bifida.</span> </span></span></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com2Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-80091198661320757732016-09-10T22:28:00.002-07:002016-09-10T22:28:46.825-07:00Be Careful What You Wish For – We Are Approved For Fetal Surgery!
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhafqp5_IbeyrklzSzCxspq50AuVFmIN7yZUXyVjW_HtOSUv5DQJ1aazQy6sibRbpi17QMXm_KQ_2RAUTNA9Ip3EU2K62oEvz5YnDhQ2Z-QEd_86OBPO8o0QXaHRRpHk2rpGw7TbmEcUw/s1600/burger.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhafqp5_IbeyrklzSzCxspq50AuVFmIN7yZUXyVjW_HtOSUv5DQJ1aazQy6sibRbpi17QMXm_KQ_2RAUTNA9Ip3EU2K62oEvz5YnDhQ2Z-QEd_86OBPO8o0QXaHRRpHk2rpGw7TbmEcUw/s320/burger.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Houston Food!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyqgvL4NMdWnuB7fqeENeWjUtC8Z0gz83LK5Ot1rE8_HE2qhzFJoj4Jvf17Insr_K8oa_RctAziAxfFVgCRHc6TY9WtTUCebahDtzTvVu2Tc5CkXDhDLlWqy7pnLpUWkbNEFqog6qvhg/s1600/Lindens.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyqgvL4NMdWnuB7fqeENeWjUtC8Z0gz83LK5Ot1rE8_HE2qhzFJoj4Jvf17Insr_K8oa_RctAziAxfFVgCRHc6TY9WtTUCebahDtzTvVu2Tc5CkXDhDLlWqy7pnLpUWkbNEFqog6qvhg/s320/Lindens.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Lindens, New Family to Us</td></tr>
</tbody></table>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">First off, I have to say that we loved our week in Houston.
We were required to spend a week at Children’s Memorial Hermann Hospital
completing tests and dozens of consultations to decide if we qualify for fetal
surgery. Houston was wonderful to us. My friend’s mother took us into her home
and treated us like family. All of the hospital staff were instantly our best
friends and I have never had such a positive medical experience. We knew right
away that we would be in good hands in Houston. And the food y’all! Texans don’t
mess around when it comes to flavors and quantities. We did some great eating. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">After some ultrasounds and an MRI on our first day, we
learned that Caleb’s Spina Bifida defect and Chiari brain malformation were
worse than we had been told. Ordinarily this would be bad news, but Bryce and I
were happy because we knew he would qualify for surgery. Our biggest fear is
that we would not qualify. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">The Director of the Fetal Center spent three hours with us
the first day. His job this first week is to make sure he explains the risks, aka
scare the living crap out of us. The surgery is incredibly complex. There are
25-30 doctors in the room. Just doctors! Not including other medical staff. It
would give you chills to know what goes into this. Roll call, timed procedures,
teams on standby ready for the worst. There are many people involved in trying
to keep Caleb and me safe. I will be this center’s 38<sup><span style="font-size: x-small;">th</span></sup> mother to
receive this surgery, and I will be the first Diabetic in history to have fetal
surgery. They are truly taking a risk themselves by accepting us and we are
deeply grateful. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">To give you a brief overview of the surgery, this is how it
goes. I will be admitted to the hospital a week before surgery to begin steroid
shots to develop Caleb’s lungs. This timing is not standard, but since steroids
are not good for diabetics they want to closely monitor me and make sure my
sugars stabilize before surgery. For the surgery, I will be given an epidural
and sedated in a much deeper sleep than for normal surgery because they need my
uterus completely relaxed and the sedation needs to cross over to Caleb. A very
large incision will be made on my abdomen. This is usually done hip to hip but
they are considering a vertical cut on me to prevent cutting through muscle and
causing infection. My uterus will be removed and examined to pick a spot to cut
open that will be ideal for Caleb’s positioning. A team will be monitoring
Caleb by ultrasound throughout the surgery. Once open, they sedate Caleb
further, and add fluids into the uterus to keep him warm and then the
neurosurgery team performs their surgery on him. This is very time sensitive and
they want him exposed as little as possible. If anything goes wrong, Caleb will
be delivered and a neonatal team will be waiting to keep him alive. After
surgery, my recovery will be incredibly difficult and painful. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">They told us all about the horrible things that can happen
to me. This included a more recent case where the mother developed a blood clot
in her leg. They caught it early but she may never have use of that leg. The
doctors started to think Bryce and I were far too excited and positive about
this surgery. They finally asked:</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">“Are you prepared to possibly lose Caleb during this
surgery?” </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">We knew it could happen. I told him, “We already have a son
that we are afraid of losing every day. Now we have to face it again with
another son. We think about death all the time and it makes us more willing to
take risks. I’m not ready to lose Caleb but I’ll never give up on giving him a
good life. Even if my body has to be cut in two, I’m ready.”</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">He said that it is clear that I’m a mother willing to do
anything for my child and I am a bit blinded by that. He said Bryce’s main
concern is my life and that is also the doctors’ main concern. If something
dangerous happens during the surgery and they have to choose between my life
and Caleb’s, they will chose mine. They have been faced with this choice in
prior surgeries. We accept this decision and hope it doesn’t come to that. We
were also asked that if they need to deliver Caleb, would we want him to be saved.
He would be so premature he could face significant challenges to stay alive. We
said yes, save him no matter what. I WILL be meeting my son. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">We know I will be in Houston a minimum of a month and I will
only be in the hospital a week. After discharged, I’m required to live right
next to the hospital so I’ll be in a hotel. I will also be in a wheelchair or
bedrest the remainder of my pregnancy. My hope is to return to Phoenix to
deliver him, but my C section may be more complicated and we need to find a
team out here that is comfortable with this. The goal is to make it to 37 weeks
but few moms make it that long. We are also considering that I return to
Houston for delivery. Caleb will be required to spend a minimum of a month in
the NICU, if not longer. We want a NICU team that will be familiar with this
unique situation. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">We are now in a whirlwind of planning and preparing. The
absolute hardest part of all of this is that I’m leaving my boys for so long.
Bryce will be their mommy and daddy. But we have been given new hope! That is
worth more than anything we could ask for. Getting this far in the process has
been nothing short of a miracle. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;"><span style="font-family: Arial, Helvetica, sans-serif;">Even though it’s all terrifying, we wished for this. So be
careful what you wish for. It may just happen. I had always wanted a natural
birth. I wanted candles, dim lights, no IV’s and no meds. I’ve always been a huge
advocate of natural birth. I couldn’t be bringing my son into the world in a
more opposite way and I just have to laugh about it. No matter how a child
comes into the world, they just have to be born. Caleb will come into the world
having already gone through neurosurgery. That’s pretty amazing to think about.
I can’t wait for him to hear what mommy and daddy decided to do for him.</span> </span></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com3tag:blogger.com,1999:blog-4698202379335650559.post-2276996238482178902016-08-26T20:10:00.001-07:002016-08-26T20:26:39.731-07:00We Are Heading to Houston!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinWJwnhyGACohgqNnNeoQLdx7gdrrZqBcVV1a9kBmh0fbdul05KswrGXUtIFRCqWPFj9oqJ3yG2MEKwWP8nd942MLBQkgLV05D1Y49SgQD-eRry7DfyMn61EFPHbqx3qJvGqHwBQvj8g/s1600/houston-tx-04.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinWJwnhyGACohgqNnNeoQLdx7gdrrZqBcVV1a9kBmh0fbdul05KswrGXUtIFRCqWPFj9oqJ3yG2MEKwWP8nd942MLBQkgLV05D1Y49SgQD-eRry7DfyMn61EFPHbqx3qJvGqHwBQvj8g/s320/houston-tx-04.jpg" width="320" /></a></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div style="margin: 0in 0in 8pt;">
<br /></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">After hearing that Children’s Memorial Hermann Hospital
would consider me, I began speaking with other moms that had gone through fetal
surgery and hearing their stories. This surgery is truly brutal and the
recovery is one of the toughest I’ve ever heard of. Deep down, I knew I would
not be capable of moving forward. There were too many logistics to sort out;
too many details on how to care for the kids, and I just knew it wouldn’t be
possible. I’ve had many surgeries in my life including heart surgery only a few
months after Bryce and I married but this one was truly getting to me. </span></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">In true Bryce form, my husband trusted God completely. He
said that if it is meant to be that things will begin falling into place. “Is
that how you think it works?” I asked him. “Things only fall into place if I
make 8,000 phone calls and fight people like I’m in court all day long.” The
truth is, we were both right. We needed a lot of God, and a bit of mamma bear
going to battle for her baby.</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">The next day I got a message from my insurance case manager.
He had done some of his own research to find out that Hermann Children’s
Hospital is in our insurance network. <i style="mso-bidi-font-style: normal;">EXCUSE
ME? </i>Our own Children’s Hospitals are not in our insurance network and only
a couple states even take our insurance. Yet this state, this hospital…things
began falling into place. Fear began melting away and I got some mojo back.
It was time to fight for my baby. The phone calls began. </span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">We are officially scheduled for a week long consultation
from September 5-9 in Houston. We could have only gotten this far with the help
of dozens and dozens of friends and family members deeply wanting to see this
surgery succeed. At the end of that week, the surgical team will decide if we
are officially accepted for surgery. Bryce and I will return home for a week
and then I would return to Houston without him indefinitely. <span style="mso-spacerun: yes;"> </span>I would be the first Diabetic to ever receive
this surgery. Making history and eating Tex Mex Baby. Sounds like a dream!</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I have spent the last week working like I’m back in the corporate
world. So many more things need to work out for this to succeed the way it
would need to. I did find out that although the hospital is in our insurance
network, none of the doctors or surgeons are covered (thanks Cigna). There are
5 doctors involved in performing the surgery since there are 2 patients- Caleb
and me. I have appealed to The State for more nursing hours to help care for
Miles until I deliver Caleb. I have reapplied to our grant company to keep our
nanny longer as she is the only person in our lives that is capable of watching
Weston or Miles, plus we trust her completely. I have asked our insurance to
consider covering some of the surgical costs. I have reached out to charities
to help us pay for my relocation costs. My mom and mother in law will have to travel
and tag team caring for me until my delivery. I had an amniocenteses- you know,
that giant needle they stick in your uterus to test amniotic fluid. Caleb and I
will need to pass every lab and MRI to even be considered. Our nurses will have
to sacrifice their time and health to work overtime hours for us. </span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">But we have faith. We have a good, good Father that is
bigger than any single one of these things. He can easily make them all happen.
He only wants good for our family.</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">If I have the surgery, I will be in Houston a minimum of a
month. If I return home, I will be on strict bed rest the rest of my pregnancy
and can only get up for doctors appointments with a wheelchair and caregiver. The
goal is for a C Section at 37 weeks but few moms make it that long. We will
need full time caregivers for me, Miles and Weston. The entire burden of life
and the household will be put on my sweet husband. It is also a very real possibility
that I will not get to leave Houston and I will be delivering Caleb by myself
out there and staying with him until he is safe to fly home. We are also
preparing that I can be gone for 6 months. </span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Time away from my kids. So much time. This will be the
absolute hardest part. I’m missing Weston’s 1<sup><span style="font-size: x-small;">st</span></sup> week of preschool
while at the consultation and it’s ripping my heart out. The preschool has made
an exception for Weston to be dropped an hour early because even they
understand the magnitude of our family being apart. Everything will be turned
upside down. </span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">But we fight for our kids. We sacrifice our bodies, our
happiness, and everything that makes sense to keep them safe. We make really
hard choices with only them in mind. I am bummed to be out of commission for
the good weather, the holidays, pumpkin spiced lattes and fall. Those are my
favorite things. But I am getting a chance to serve my son with my mind, body
and spirit. What a privilege to be given this opportunity. </span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Weston just said to me, “Grandma lives far far away. You
will not go far away right mommy?”</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";"><span style="font-family: "arial" , "helvetica" , sans-serif;">Well son. I may be going far far away. And you won’t
understand why I can’t hug you. But it’s because I don’t just love you now, I
love you forever and I want to make the best life for all of my sons forever. One
day you will understand.</span> </span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "times new roman";">
</span></div>
</span><br />
<div style="margin: 0in 0in 8pt;">
<br /></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com0tag:blogger.com,1999:blog-4698202379335650559.post-82116116160433474922016-08-21T18:41:00.000-07:002016-08-21T21:42:42.464-07:00The Plot Thickens- Caleb and Fetal Surgery<br />
<div style="margin: 0in 0in 8pt;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2EVZN8fRc2ubg0OZT3mbL9f6q0QTL1_KTO7S8PiX0-KNDPZmhYs9Y6DffbiEUs2O35c-z7JdRQfssaGJtnPCMyQTm1dH4V6DlApCXY7HOC5LgCxS0KY_V0uySaCvSgfEp09IpnnnAmw/s1600/church.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2EVZN8fRc2ubg0OZT3mbL9f6q0QTL1_KTO7S8PiX0-KNDPZmhYs9Y6DffbiEUs2O35c-z7JdRQfssaGJtnPCMyQTm1dH4V6DlApCXY7HOC5LgCxS0KY_V0uySaCvSgfEp09IpnnnAmw/s320/church.JPG" width="260" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The twins at Church this morning.</td></tr>
</tbody></table>
<span style="font-family: "arial" , "helvetica" , sans-serif;">As some of you may remember, I spoke a little about fetal
surgery when I was pregnant with Miles. In this surgery, the defect on the baby’s
back is operated on in the mother’s womb in hopes for a better outcome to their
health in the long run. My doctors and I made calls to all the big hospitals in
the country that offer this surgery and the answer was always “no” because of
my Diabetes. Type 1 Diabetics are excluded from getting this surgery. We even
considered flying to Brazil to get the surgery before we eventually accepted
that it wasn’t in the stars for us. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Now in our second round of being pregnant with a Spina
Bifida baby, we again inquired about fetal surgery. Again we were met with the
same answers for the same reason and we didn’t push it too hard. To be honest,
we were aware of how risky the surgery is and we didn’t think it would be
plausible to uproot our lives with the care that Miles requires. Our plan was
to deliver Caleb at the same hospital, using the same doctors as Miles. We didn’t
need to research and we still know everyone there. Heck, we were just discharged
a year ago. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">But then…</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I got a text from my sister in law with a photo of a
business card for a neurosurgeon at Children’s Memorial Hermann Hospital in
Houston. Through a crazy connection, the mother of the little boy she nannies
has a working relationship with this doctor. She mentioned my case to him and
he told her to have me contact him directly. I sat down immediately and wrote a
lengthy email trying to concisely describe both my sons’ cases. Right away, I
was on the phone with the Fetal Department Director. He spent an hour on the
phone with me and in the end I couldn’t believe what I was hearing. Yes, I’m a candidate.
I would be the first Type 1 Diabetic to ever receive this surgery, but they are
willing. They will evaluate me. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Whoa. This just got real. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I was flooded with excitement as I researched and watched
videos and began obsessively talking to moms that had gone through the surgery.
Along with that excitement entered sheer terror. You see, when this surgery was
a hypothetical it was extremely appealing. Now we needed to hash out the dirty
details; the pros and cons. Suddenly, there were a lot of cons. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">In the fetal surgery, I would relocate to Houston for an
indefinite amount of time. There is a large team of surgeons that would perform
an incredibly complicated and risky surgery on Caleb and me. I would spend at
least the next week in the hospital on an epidural and a drug called Magnesium
Sulfate. The horror stories of this drug are fairly scary, but it is to prevent
your body from immediately delivering the baby. When I recover, I will be moved
to hotel for a couple weeks and will need a 1 on 1 caregiver. I will also be
managing a lot of pain. If all goes well, I will be able to return home. If
not, I will be delivering Caleb in Houston by myself. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">If I make it home, I will be on strict bed rest. As in, I
can’t do ANYTHING bed rest. As in, I will need my own private caregiver
bed rest. I will be at huge risk of life threatening complications- uterine rupture,
placenta abruption, yadda yadda yadda. And then there is my Diabetes. These
babies are all born early via C-Section. They shoot for a 34 week delivery, but
most of the moms I have spoken with have delivered between 28 and 33 weeks.
Then you have a tiny preemie facing a whole slew of complications. And a mother
that has put her body through a lot. Some moms say it took them 2 years to
physically recover. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">So why would we consider something like this? Sounds like a
huge drag right? </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Because we would do anything for our baby and this could
improve his life. Miles’s outcome has been rare. We have been told he is the
.001% of Spina Bifida kids that has the worst complications. Caleb looks so
similar to him on ultrasound, we want to try and give him the best future
possible. Not only for him, but we also believe it will improve the quality of
life for all of our children. Not in the short run. We will sacrifice a lot for
this. But in the long run, we can focus on each of their individual needs best
if we don’t have two kids on ventilators. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">But we are really, really scared. There are so many things
that would have to fall into place for this to work. First, Caleb and I would
need to be accepted for the surgery when we go to the consultation in Houston.
I will need to find someone to be out there with me to be my caregiver as Bryce
will need to stay home to work and be with the kids. The state would need to
beef up our nursing hours for Miles and we would need to find nurses to train
and fill those hours. We would need the grant company to renew our grant so we
can keep our nanny. Our nanny would have to sacrifice another job she has to stay
with us longer. And the biggest battle, our insurance has said they will not
cover this. Even ACCHS covers this surgery, but our insurance won’t. There are
so many details it makes my head spin. We have to figure all of this out in the
next couple weeks. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">If God says yes, then we say yes. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">In church this morning, a verse in a worship song really
stood out to me. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>“God, When you move, you move all our fears.”</em> </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">This situation seems almost impossible to me. And the
thought of being drawn and quartered…well it’s unappealing. But where God leads
me, he erases the fear, doubt and shame of my emotion. He will only lead to the
good, glorious and beautiful. Let’s hope that’s all in the big ‘ol state of
Texas ya’ll!</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";"><span style="font-family: "arial" , "helvetica" , sans-serif;">If you would like to see how the surgery works, here is a
series of short videos explaining Spina Bifida and the procedure. If you get queasy,
don’t worry. This is more of an advertising video and doesn’t explain gruesome details.</span>
</span></div>
<br />
<div style="margin: 0in 0in 8pt;">
<b><span style="color: #555555;"><a href="http://childrens.memorialhermann.org/spina-bifida/" target="_blank"><span style="color: blue;"><span style="font-family: "calibri";">http://childrens.<wbr></wbr>memorialhermann.org/spina-<wbr></wbr>bifida/</span></span></a></span></b></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com2tag:blogger.com,1999:blog-4698202379335650559.post-83608924090471444632016-08-15T14:13:00.001-07:002016-08-15T14:13:48.597-07:00Would I Choose This Life?
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivciL2FbBVa7JifhZWT_zGtABsjEmvrnEBBBdPIvKcLDC1xQpOVW3EdXmqq7WY4wT6yA1U36WKO34AIIeOg3yZbniqoge07wHo6q6rNWg-IQ0MDZpT6e11YPP7rpAH2dTM3VAJqMyiWw/s1600/miles.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivciL2FbBVa7JifhZWT_zGtABsjEmvrnEBBBdPIvKcLDC1xQpOVW3EdXmqq7WY4wT6yA1U36WKO34AIIeOg3yZbniqoge07wHo6q6rNWg-IQ0MDZpT6e11YPP7rpAH2dTM3VAJqMyiWw/s320/miles.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles pondering the meaning of life, 18 months.</td></tr>
</tbody></table>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">When Bryce and I were engaged, he lived in Chicago and I
lived in Arizona. It was long distance for 5 months as I planned the wedding
and we relied on phone calls to keep in touch. He had just started his first
big boy job as an auditor for PwC and the hours were absolutely brutal. He
would usually call me as he was getting off work at 1 am. When he first got
there, he worked in the North Suburbs and didn’t have a car. After work one
night he missed all the buses and trains home. He couldn’t find a cab and was walking
in deep snow in his dress shoes with no coat on in the middle of nowhere. He
was overwhelmed. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">On my 28<sup><span style="font-size: x-small;">th</span></sup> birthday that fall, Bryce didn’t call
me. I know, I know. He was in his new job and wasn’t able to, but you can’t
expect girl on her birth to be rational. I was so mad. In the many years since,
he has learned my very appropriate expectations for my birthday. Gowns, private
jet, Filet Mignon, dripping in diamonds…am I right girls?! Anyway, his best
friend, Erik, text me happy birthday and asked how we were doing. Bryce and
Erik are very close and for some reason I just spilled my guts to him that
things were really hard and frustrating and I was wondering if we should even
get married. (I’m telling you, my birthday is REALLY important to me!) I’ll
never forget what he said. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">“Now is the time to
see what you guys are truly made of.” </span></i></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">That was all he needed to say. This is when we get to see
the nitty gritty of our relationship. Were we made of the good stuff or bad
stuff? The forever stuff or the give up stuff? It was up to us. I know we were
made for the deep down, good and bad, never ever getting rid of each other
stuff. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">I love putting my husband in the hot seat and asking him
philosophical questions. He always humors me and honestly answers, hoping that
we can quickly move on to watching reruns of The Office. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">“If you could know that our 4<sup><span style="font-size: x-small;">th</span></sup> child would also
be disabled, would you stop having children?” I realize this is a loaded
question to ask as Pam and Jim are reminiscing of their love for mixed berry
yogurt. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">“Not necessarily.” He seemed confident in his answer. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">“If you could know our 4<sup><span style="font-size: x-small;">th</span></sup> child would be
healthy, would you have another one for sure?” </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">“Not necessarily. One at a time Allison.” Hmmmm, that answer
was the same and I needed to pry more. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">“If someone could tell you that two of your children would
be disabled, and you would go through everything we have gone through, would
you still make all the same choices?”</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">“Yes I definitely would.” Say whaaaaat? I mean, that’s what
I wanted him to say but he was taking it a step further. He said he wouldn’t
ponder it and be afraid. He would CHOOSE this life, exactly as it is. And if
someone could have given him a crystal ball at 22 and told him how it would
play out, he would gladly move forward into it. Did I feel the same way? I had
to chew on that for a bit. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">Let’s say an angel could give me a message about what the
future would hold before I had children. She is telling me to move forward
without fear and not change my course because this is God’s plan for me. Well,
honestly I may need a little convincing because it sounds frickin scary Angel!
This is how imagine it going:</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">ME: </b><i style="mso-bidi-font-style: normal;">“Will
I be able to keep my mojo? The fun side of me that is carefree? I don’t want to
lose myself.”</i></span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Angel:</b> <i style="mso-bidi-font-style: normal;">“You are going to change a lot. Don’t limit yourself to who you thought
you would be. Let yourself become the woman God intended. It’s much better than
the woman you once were. And yes, you will still have mojo. Like, tons of it.”</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;"> </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Me:</b> <i style="mso-bidi-font-style: normal;">“What
if others judge us? I don’t want a whole future full of that. I’m more
sensitive than people think.”</i> </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Angel:</b> <i style="mso-bidi-font-style: normal;">“They will. They will also have someone to answer to for that. But honestly,
that was going to happen either way. That’s people and that’s life. Don’t place
your self-worth in others dumb dumb.”</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;"> </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;">Did Angel
just call me a dumb dumb?</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 0pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial, Helvetica, sans-serif;"> </span></b></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Me:</b> <i style="mso-bidi-font-style: normal;">“I’m
worried about my oldest son. What if I can’t be the kind of mother he needs
because I’m so focused on the other children?”</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Angel:</b> <i style="mso-bidi-font-style: normal;">“Oh come on! You know that kid is a child prodigy in every way.
Besides, you grew up in his shoes and you are an absolute hoot to be around.”</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Me:</b> <i style="mso-bidi-font-style: normal;">“Wow
Angel. Now I’m blushing.”</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;"> </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Me:</b> <i style="mso-bidi-font-style: normal;">“Well
what about my husband? What if he isn’t satisfied with this life and secretly
feels held back or disappointed in choosing me?”</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Angel:</b> <i style="mso-bidi-font-style: normal;">“Who Bryce?! Ummm, he will adore his life with you and you know that’s
a guy after God’s own heart. I’m not even going to tell him you said that
insane statement because he would laugh and say worrying is a sin so you better
buck up you just get over this nonsense!”</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;"> </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;">Wow. This
Angel really has some sass. I like her. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;"> </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Me:</b> <i style="mso-bidi-font-style: normal;">“Why
do my children have to experience more suffering than others? And what if I
lose them too soon? I won’t be able to handle it. Actually this all sounds like
a lot Angel. Are you sure this is the plan?”</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Angel:</b> <i style="mso-bidi-font-style: normal;">“Listen to me. Hard things bring you closer to God. Do not envy those
that breeze through life Allison. They won’t get to experience some of the
beautiful things you will. And you will never handle this alone. That’s why I’m
here.”</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Me:</b> <i style="mso-bidi-font-style: normal;">“Couldn’t
it all be that way without this disability stuff? The pain, the heartache?”</i>
</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Angel:</b> <i style="mso-bidi-font-style: normal;">“No it can’t. Stop overthinking it girlfriend! Your kids are the cutest
ones God has made yet! You won’t be worrying about this stuff every day. Now do
you want me to tell you who the next Bachelor is?”</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Arial, Helvetica, sans-serif;"><b style="mso-bidi-font-weight: normal;">Me:</b> <i style="mso-bidi-font-style: normal;">“No!
Don’t spoil the entire future for me! I like surprises too. Sheesh.”</i> </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;"> </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><span style="font-family: Calibri;"><span style="font-family: Arial, Helvetica, sans-serif;">Well that
solves it. I would choose this life too. Over and over. Because that’s what has
been asked of me and also because it’s so beautifully worth it.</span> </span><br />
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;"> </span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com1Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-82027934265469040282016-08-08T21:18:00.002-07:002016-08-08T21:18:54.368-07:00Paying Hope Forward- A Letter To Our Doc<br />
<div style="margin: 0in 0in 8pt;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwD1IXWI-DJNHSrNSK0pRMpq-pskiSFOFfbnk-FFXNnw775Pkd1sPTfUpiy_Q0L83Q63QngUw8BieHC6-dPzYLVM5xdlkadidqqSMnQShuWUqib8aKTiUf5IrRZ1QlyQ6bNbCOorKbbA/s1600/letter+pic.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwD1IXWI-DJNHSrNSK0pRMpq-pskiSFOFfbnk-FFXNnw775Pkd1sPTfUpiy_Q0L83Q63QngUw8BieHC6-dPzYLVM5xdlkadidqqSMnQShuWUqib8aKTiUf5IrRZ1QlyQ6bNbCOorKbbA/s320/letter+pic.JPG" width="240" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">We had a very interesting visit with our Perinatologist last
week. We really like her and she is the same doctor that gave us Miles’s Spina
Bifida diagnosis. This conversation was obviously different and we mostly
talked about how shocking it is that it’s all happening a second time. She said
our chances were less than 5% that it would happen again. She said she spoke
with some Geneticists she knows and they were all very surprised about our
family with 3 cases so close in a family. She recommended we look into some
studies and contribute our genes into research. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">“How can I have a healthy child? I’ve always wanted to have
a girl.” I asked her.</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">“Keep having children! This won’t happen every time.” We
liked her answer. “I can’t wait for you to come back to me next time when you
are pregnant with your daughter.”</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">She commented that she had never seen a family so positive
and light hearted. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">After that meeting, one of her comments kept coming back to
me. She said usually gets the hardest and most complicated cases. I imagine she
sees a lot. We felt inclined to send her the following letter. <span style="mso-spacerun: yes;"> </span></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>"Dr. Kuhlman, </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Bryce and I wanted to thank you for the way you handled our
diagnoses of Miles and Caleb. I know you must give hard news often and it is
very emotionally taxing for you. We felt like you are truly walking through it
with us, without making it seem too good or too bad. We also appreciate that
you told us to have more children. We have always wanted a lot of kids and this
has made it discouraging. Many medical professionals think we are crazy for
wanting more children, and maybe we are, but we love our kids all the same. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>I also felt inclined to mention something that crossed our
hearts after our last visit. You had said that you often get the toughest
scenarios; the hardest ones to diagnose. I imagine you see parents in their
darkest points, making the hardest decision of their lives. We know that
feeling very well, times two. One thing we gained after learning of Miles’s
disability while pregnant, was that those horrible feelings of despair,
hopelessness and depression all go away. Feelings are fleeting and constantly
changing and it’s difficult to make a life altering choice in the midst of
sadness. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>If there are parents faced with similar news as we have
gotten, we would love to offer to speak with them if they would like. We do not
want to influence their decisions or pass judgement, but simply be a listening
ear that knows exactly how it all feels, and also share our story. We have
gained a lifetime of wisdom in the last few years and the most important thing
we have learned is this: Just because life doesn’t turn out the way you
expected, doesn’t mean it’s not a good life. And just because the whole world
may not see your child’s life as worthy of living, doesn’t mean it’s not a
great life to live. We have been privileged to learn lessons that most never
get to learn and we have so much more joy because of Miles’s life, as we will
Caleb. We are the lucky ones. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Again, we don’t want to represent your opinions but it
helped me a lot to talk with other mothers that had heard the exact news that I
had. Also, my husband seems shy in our visits, but he is wise beyond his years.
I know that fathers have a whole different set of worries to consider and he
would be a great guy for another dad to talk to. He has still exceled in his
career, still goes golfing and still loves life. It won’t be as scary as one
might think.</em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>If people aren’t interested in speaking to us, they can also
watch this video we had done when Miles was placed on hospice. It speaks into
how each of us were effected. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<a href="https://vimeo.com/164765749"><span style="color: #0563c1; font-family: "arial" , "helvetica" , sans-serif;"><em>https://vimeo.com/164765749</em></span></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Here is another happy video of Miles.</em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<a href="https://vimeo.com/163583375"><span style="color: #0563c1; font-family: "arial" , "helvetica" , sans-serif;"><em>https://vimeo.com/163583375</em></span></a></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Sincerely, Allison Lefebvre"</em></span></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com0Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-7593824148294430572016-07-27T10:02:00.000-07:002016-07-27T10:39:22.032-07:00Deja Vu- Another Son, Another Diagnosis<br />
<div style="margin: 0in 0in 8pt;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipCFELoYJJKqp-U-ndn1fFCG81OmtFmrST0uX-phXKJH5EUCEnqy-khiBoi_-SCxzonR58q1EJF6jbt-2Qj27NVHkCDBV1yr0l-2K3Ghh-mODeZJj-fWJvpZ21gKxDN74DwZP1Dr8xww/s1600/image1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="210" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipCFELoYJJKqp-U-ndn1fFCG81OmtFmrST0uX-phXKJH5EUCEnqy-khiBoi_-SCxzonR58q1EJF6jbt-2Qj27NVHkCDBV1yr0l-2K3Ghh-mODeZJj-fWJvpZ21gKxDN74DwZP1Dr8xww/s320/image1.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Caleb at 14 week ultrasound</td></tr>
</tbody></table>
</div>
<div style="margin: 0in 0in 8pt;">
<br /><br />
<span style="font-family: "calibri" , sans-serif; line-height: 107%;"><span style="font-family: Times New Roman;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">We recently found out we are having our third son, Caleb
Drew. His namesake is in honor of my father, Drew Hastay. We planned for this
baby, we prayed for him and we prepared for a year and a half. I did genetic
testing, IV vitamin therapy, saw naturopaths, spent thousands in the best
supplements, ate organic, skipped necessary x-rays, didn’t use lotion or
shampoo with parabens, you get the idea. Every month we were ready to try for
him, I put it off just one more month because I wanted to make sure I was doing
everything perfectly. Finally, April 26, 2016, we found out we were pregnant. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">Everyone said the same thing. <i style="mso-bidi-font-style: normal;">“I know in my heart this baby is healthy.” </i>And the truth is, I did
too. I was not worried about another Spina Bifida diagnosis because it is so
incredibly rare to have one child with it, let alone two. Plus we had other
things to worry about. Our insurance dropped all of Miles’s access to medical
care, providers and hospitals, therefore I was fighting hard to keep him safe.
I was also stricken with awful morning sickness and fatigue, being hospitalized
twice in my first trimester. I kept telling myself that once I knew Caleb was
healthy then everything would be smooth sailing. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">At 15 weeks I got the Quad blood test that looks for
something called AFP. It’s a protein that spills into the blood stream that
indicates a neural tube defect. This test came back positive with Miles at a level
4 (normal is below 2) and was our first indication of Miles’s birth defect. For
Caleb, I sat on the couch clenching my phone, waiting for the nurse to call me
back with results. Since I had not heard from her first, that must be good
news. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">I finally got her call. Bryce was working on the plumbing
under the sink and I sat close to him. The nurse’s voice began to shake. <i style="mso-bidi-font-style: normal;">I knew</i>. She talked about my elevated AFP
and that my baby may have a neural tube defect; that I should see a high risk
doctor. “I’m so so sorry,” she kept repeating. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">“What is the exact AFP number?” I kept asking. I could tell
she was avoiding the answer. After repeating myself she answered timidly,
“8.5.” </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">“Ohhhhhhhh My Gosh, that’s too high,” were the only words I
could slowly muster. Bryce sat by the sink with his head down. He knew what we
were talking about. I got off the phone, we hugged and I cried. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">My perinatologist immediately called me. She is the same
doctor that gave me Miles’s diagnosis. She was beside herself. She said our
only hope is that the lab got the results wrong. Banking on a lab error doesn’t
leave your hopes high. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">We had to wait 4 days before getting an ultrasound, though
we already knew what was happening. I researched how an AFP result can be that
high and other than a neural tube defect, the only other cause would be if I
had liver cancer. That’s what I was hoping for. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">“Maybe I have liver cancer and the baby is ok,” I hoped out
loud to my husband. That’s the first time he looked really sad. I continued,
“I’ve always wanted to go to heaven.” He finally looked up and smiled at me
with a look in his eye that wouldn’t even consider the thoughts I was having.
He said,</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">“Save me a seat.” </span></i></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">We eventually got the ultrasound but the night before I
begged God for a miracle. I knew He could take all of this away. I knew he
could make this all a lab error and show me a perfectly healthy son that I
could hug and squeeze and nurse and could play with Weston. I told him I won’t
be mad at Him if He says no, but I know He can do this and I would never be so
grateful for anything in my life. I would be a better follower of Him, a better
wife, a better mom, if He could just spare my son of this. I don’t usually make
deals with God, but it seemed like a pivotal moment to try. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">God said no.</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">The ultrasound showed almost exactly the things we had seen
in Miles. A severe Arnold Chiari II brain malformation, an elongated
cerebellum, a lemon shaped head, an indented and open spinal defect and spaced
out vertebrae. The flat open defect is very rare and part of why we believe
Miles is such a severe case of SB. Caleb was exactly the same. They looked at
him under ultrasound for 2 hours. Is his defect in the lumbar region of his
spine? Maybe thoracic? Wow, the situation kept getting worse. They said they
would fight hard for me to get inutero surgery this time. There are great risks
to mother and baby during this surgery. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">We were prepared for the news but it still took our breath
away and sent hot needles down my body. I couldn’t help but ask the doctor if
she had ever known a mother with two SB children before. No she hadn’t. The usual
thoughts quickly ran through my head. What did I do wrong? What is wrong with
my body? I will never be able to have more children. Did I do something to
disappoint God? How will I ever watch another child go through what Miles has?
How will we afford this? Are we equipped to care for two disabled kids? </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Arial, Helvetica, sans-serif;">I didn’t realize a
broken hearted person can still have their heart broken again. </span></i></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">When we got to the car I cried hard for the first time. “I’m
not doing a good job at making kids. I’m not a good mom.” Bryce stopped me,
“That’s not true. Our children are the cutest people in the world. We are
luckier than most people. I’m excited to have Caleb!” </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">I cried, “We will never be able to go on a family vacation.
You never got to have your baseball team.”</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt; tab-stops: 351.0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">He smiled, “We will have a
wheelchair softball team!” I finally laughed. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt; tab-stops: 351.0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">We spent the rest of the day
letting it soak in. The pain is real and the grief is thick. All of the
emotions and fears are the same as when we found out about Miles, yet not as
intense. I cry periodically, but not as often. My appetite is suppressed, but
not gone. My heart falls out of my chest, but then returns to its home. I hope
for miracles, but I’m not begging for them. We have gotten used to bad news. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt; tab-stops: 351.0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">And the concerns are different
this time. Somehow it makes last time look simple. Miles is unstable and on
hospice. He needs 24/7 critical, acute, 1 on 1 medical care. The state does not
provide us 24/7 care. Who will care for Miles while Caleb is in the hospital?
How does Bryce hold down a job in this circumstance? His beard has already gone
grey in less than a year. What will we do about our bad insurance? Weston is
older now and needs us. Who will care for him while we are gone? How will we
fit the boys and equipment in our car? How will we fit in our home? I am
already not in great health. Am I capable of taking care of these kids? Those
questions are real and something only The Lord can provide answers for. My mind
starts to explode when I think of them all at once. </span></div>
<span style="font-family: Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt; tab-stops: 351.0pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">For some reason, God has asked a
lot of us. I often wonder why he chose us. Why he thought we were adept in
living this life. I also know there is a lot more to life than my comfort and
when God calls you to something, you answer. You do it with thanksgiving and praise.
I’m lucky God entrusted me with His most precious spirits. I hope I can make
Him proud.</span> <span style="mso-tab-count: 1;"> </span></div>
<span style="font-family: Times New Roman;">
</span><br />
</span><br /></div>
<div style="margin: 0in 0in 8pt;">
<br /></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com0Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-1797802582333093532016-06-28T21:42:00.002-07:002016-06-28T22:16:55.346-07:00Anticipatory Grief<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXEGNADw_uTQoxaNBBeNchKT_0sQhXD4ZjcxlHoYXpywpBKNa8RH4g4I0taLgg4aZULb_8tDIauRIOvVXF8KQCN4473HwqmkPjwIoHWyZbdprLndxpebLTKSdav78EMuGmjK5LiqgFbA/s1600/IMG_0080.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXEGNADw_uTQoxaNBBeNchKT_0sQhXD4ZjcxlHoYXpywpBKNa8RH4g4I0taLgg4aZULb_8tDIauRIOvVXF8KQCN4473HwqmkPjwIoHWyZbdprLndxpebLTKSdav78EMuGmjK5LiqgFbA/s320/IMG_0080.JPG" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles, 16 Months Old</td></tr>
</tbody></table>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">When doctors placed Miles on hospice in January 2016, this
term began getting tossed around a lot. Anticipatory Grief. I had already named
it Pre-Grief. I still think mine is cuter. I think sometimes when they make something
sound more formal, they think it feels less painful. They place children on
hospice that they don’t think will live another 6 months. It was a very hard
choice but we knew we needed additional resources at home for him like visits
from nurses and access to medications. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">“You are experiencing anticipatory grief,” the social worker
says to me. “Oh you mean pre-grief? I know all about that darlin.” I’m always
trying to lighten the mood in these meetings. “I live in a constant state of
limbo. Happy and sad. I never quite know what to feel at any moment. Some days
it feels like I’m dying.” They deal with death everyday but I’ve noticed
hospice workers don’t attach a lot of emotion to it or ask about your emotion.
It’s matter of fact. You get the sad eyes but that’s where the emotion ends. They
are of course incredible people but I haven’t met one that’s lost a child. It’s
a small population. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Pre-Grief sounds like you get a nice little cushion period
to prepare for something horrible. But it’s different than that. I’ve tried to
identify it a lot over the last 6 months. This is all I’ve come up with:</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You are never fully in a moment. You want to absorb every
playful, perfect moment with your child but you are always reminded that it
could be the last. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Some days it’s hard to be near your child. This is the hardest
to describe to someone. When I hold Miles, I can be overcome with emotion. A
piece of my soul in my hands, looking up at me and holding my cheek. And he
could be taken away. The insurmountable love can be too much to bear. Love
really does hurt. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You stay up all night; mind racing, searching for answers. And
all day you just want to sleep and get through. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You numb your mind with TV because you can live in a world
for a moment that isn’t…this world. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Your husband and you try to write a will if anything happens
to you but there is no one to take your kids. No one that could possible handle
this life and no one you would burden to ask. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You beg God to take you first. You know it’s selfish but you
can’t outlive your child. You just can’t.</em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>People ask how life is and you wonder if they noticed that
you drifted away like a leaf in the wind awhile ago. They are just talking to a
shell. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You forget conversations. You either word vomited too much
or stayed closed off. People get mad and take it personally. You realize just
how alone you are in all this. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Most days you thank God for your life and then silently day
dream about how it would be if this had all turned out very different. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You lose friends by the flocks. It’s like hydrogen peroxide
in your gaping wounds. You had no idea you could feel that much pain. But the
few that remain are solid gold. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Your insurance drops coverage on your son. You rack up
impossible amounts of medical debt. You put it in a pile and go back to sleep. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Your kids become very good at mimicking your crying. “Mommy
is sad again,” as they sniffle softly and look at you with the deepest concern
you have felt all year. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Your skin becomes so thick yet your heart is like paper
mache. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You stop getting invited to barbeques, movie nights and
parties. You convince yourself that they would have invited if they could have.
</em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>Your son has nights where he is barely hanging on. You are
doing CPR off and on for hours. Your husband and nurse are frantically trying
to save him until you are all completely exhausted. You finally sedate him with
Morphine and Ativan. Your husband and you look at each other with no words,
but the same thoughts are in your mind. What on earth is happening? Your nurse
can barely breathe. It all happens again the next night. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You don’t fight the doctors, therapists and insurance reps
anymore. You used to go in guns blazing and now you go in accepting defeat. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You know you are depressed to some level. But it’s not a situation
that’s going away. You are forever changed. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You still try to serve others. Getting excited for your
friends’ lives; feeling their joy and pain. You throw birthday parties and baby
showers and try so hard to walk the walk. Some days you pull it off. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You read stories of other mothers that have lost children. “Why
are you doing that to yourself?” friends say. Because this is your reality now.
</em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You hang on…no, you cling tightly to the hope that this will
all just get better one day and your child will be ok. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>You ask your husband before bed one night, “Do you think I
will ever hold Miles with no machines? Where I can squeeze him and walk with
him and not worry?” He pauses for awhile. “No I don’t,” he responds with such
sadness. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>In your lowest of lows, you are acutely aware that this
desperate, deep, heart splitting pain isn’t even a thousand of the pain you
would feel if your baby died. </em></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em><span style="font-family: "arial" , "helvetica" , sans-serif;">For a moment each day, you hold your children in your arms
and they giggle and laugh and look at you like they couldn’t love another human
being more. You have made their life perfectly loved. For a moment it all melts
away and you forget all suffering in the world and you are present for just a
moment. You are just a mom, holding her kids and God reminds you, “I’ve got
you.”</span></em> </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><em>
</em></span><br />
<div style="margin: 0in 0in 8pt;">
<em><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></em></div>
<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";"> </span></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com3tag:blogger.com,1999:blog-4698202379335650559.post-19426210676610158482016-03-24T21:43:00.001-07:002016-08-14T23:14:16.835-07:0012 Things You CAN Say To A Special Needs Parent<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL8swNLIZ6eh-wscFqRGE-2c_5iWkdjC4mm011KJj7ps5rLQXXUQ9QhhCNvfwuFILmbHcvPuwEru50JP5RBEVzH3ETmfaFLmgmcQD_dhj1-AFnWytnm83d7AaWRNr_OLLKO6s8gr0ViA/s1600/AllisonMiles-0042+-+Copy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL8swNLIZ6eh-wscFqRGE-2c_5iWkdjC4mm011KJj7ps5rLQXXUQ9QhhCNvfwuFILmbHcvPuwEru50JP5RBEVzH3ETmfaFLmgmcQD_dhj1-AFnWytnm83d7AaWRNr_OLLKO6s8gr0ViA/s320/AllisonMiles-0042+-+Copy.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miles, 12 Months Old</td></tr>
</tbody></table>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Lists are so cool right now. If an article isn’t in list
form, it isn’t worth reading. Therefore I’m creating my own list. A list with a
twist. I have read many posts lately on “The 10 Things You Should Never Say to
A Special Needs Parent/ Someone Grieving/ Someone With A Limp/ Someone with A
Lazy Eye/ Someone Who Expected More On Their Tax Return/ Someone That Got A “C”
On Their Spanish Test." You get the idea. These lists put us all in a precarious
situation. We could all easily slip and say the forbidden cliché that our
Facebook friend specifically told us not to! The nerve of those that are trying
to care. </span></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I have been in one of the above stated demographics for the
past year or so and I need to point something out. If anybody puts effort into
attempting to bring you words of love or wisdom, appreciate them. It’s
extremely hard and brave to come up with the best things to say so let’s not
shame each other for the effort. Every “Like”, message, text, cliché remark,
hug, lunch, flower, tear means someone is feeling your pain. Let’s celebrate
how hardships break down barriers and let us see through the nonsense. Your
crappy Spanish test could actually make the world a better place. </span></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">1. It seems like
God has given you a lot to handle and you are doing it beautifully. </span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">There are times in the
midst of hard things it feels like God has given you more than you can handle.
That’s because He has. He wants you to lean on Him. If you feel yourself about
to say “God won’t give you more than you can handle,” try substituting the
above line instead. </span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">2. If I am ever
in your shoes, I hope that I maintain the joy that you do. </span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">You feel the words
bubbling over. You so badly want to say, “I could never do what you are doing.”
And of course you mean this from a good place. The truth us, you could handle
it and you would. We are all dealt difficult things and it looks different for
everyone. If you admire the way someone deals with their circumstance, let them
know!</span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">3. Your child is
so beautiful. I would love to be educated on their disability.</span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">No need to run, avert
your eyes or say, “Look at that poor child.” We are proud of our kids and want
to show them off just as you do! <span style="mso-spacerun: yes;"> </span></span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">4. You seem like
you have a lot of love to give. You should have more children!</span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Sometimes when your
child has a birth defect or disability, it’s natural to blame yourself. I have
done this to myself a million times. It’s a horrible feeling. Once a woman in
my home said to me, “I have never seen anyone look as tired as you. You
definitely shouldn’t have more children. Your plate is full.” The truth is, I
do want more children. I want them to be healthy but I also just love my babies
no matter what. Which leads me to #5. </span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">5. Everything is
going to be ok. I promise. </span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I love saying this to
people and I love it when they say it to me. Sometimes parents worry a lot. We
worry about our current children and the ones we haven’t even had yet! Let’s
keep it encouraging, capeesh? </span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">6. Some days are
really going to suck. But then most days are going to be filled with joy.</span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This is my favorite
and was said to me by my friend Ashleigh a day after I got my son’s diagnosis.
This sums up everything you should ever say to another human. Affirm their pain
and then offer hope. No one appreciates it when you brush aside their
suffering. Yet there is no need to dwindle. It’s there and real and we should
experience it. And then we should choose joy. </span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">7. There is
nothing normal about your everyday life but there is a special meaning for your
child’s life. </span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">One of the first
things my husband said to me when we knew our son would be born with a
disability was, “All I wanted is a normal life.” When I shared this deep fear,
we often heard, “What is normal anyway?” Well, seeing your child’s heart stop
isn’t normal. Go back to the lesson on #6: Affirm then offer hope. </span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">8. That sounds
really challenging but I can see the love in your eyes. </span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I meet people all the
time and it comes up in conversation that I have a critically ill son. “I’m so
sorry,” is always response. <span style="mso-spacerun: yes;"> </span>Hey, it’s a
natural response. I say it to people constantly. But honestly I don’t want
anyone to feel sad and sorry about my beautiful life. </span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">9. The suffering
of children is hard to make sense of. </span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Ain’t this one the
truth! We don’t know why everything happens but we do know God is in charge.
Sometimes bad things happen in this world for no good reason because it’s a
fallen world. So let’s skip over, “Everything happens for a reason.” </span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">10. I will be at
your house at 10 am to bring you lunch/ pick up your kids/ water your plants/
feed your pet alien/ deworm your cat. I won’t take no for an answer. </span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This one is very
important. At my darkest times, I have found myself turning to the same people
over and over again for help. It’s because they were adamant. People lovingly
say, “Let me know if you need anything,” but articulating your needs is difficult
and embarrassing. I recently walked in to my house while my son was in the
hospital and my girlfriends were filling my freezer with food, unannounced. They
poured me wine and told me to shower. That’s a good friend. </span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">11. *HUG* </span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">There aren’t always
words for everything. There is something powerful in the unspoken. A few days
after I had my son, I went to church. My friend came to give me a bear hug and
I burst into tears. Her hug made me feel safe. We stayed in that embrace for
over 5 minutes and we both cried. I didn’t say anything and neither did she. We
didn’t need to. There was pain and no words could help. Let’s all hug each
other more. </span></i></div>
<div style="margin: 0in 0in 8pt 0.5in;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">12. You are a
Super Mom. </span></b></div>
<div style="margin: 0in 0in 8pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Say this to every mom
you know as much as possible! It gives people all sorts of warm fuzzies!</span></i></div>
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "calibri";"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">If you have word vomited the wrong thing to someone or your
bestie worked hard to formulate the same words you have heard a hundred times,
don’t fret! We are all trying and even if it comes out wrong, hypersensitivity just
puts well-meaning loved ones on edge. Don’t discourage the conversation by
setting strict rules. Is my son handicapped, disabled, impaired, developmentally
behind? Yes all of them and none of them. There is no perfect word and these
are just words we use to describe a circumstance, not the true human. Lighten
up, hug it out, and keep talking.</span> </span></div>
<br />MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com4Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-87597501093239175402015-09-15T18:45:00.001-07:002015-09-15T18:45:15.857-07:00Miles vs. Life<br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Everything can change in a moment. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">My best friends, Kandace and Jessica, were in town visiting.
We had been at the pool and came home to hang out with my sons. As we arrived,
we immediately went to Miles and picked him up to take pictures with him. Miles
was all smiles. </span><br />
<span style="font-family: Arial;"><br /></span><br />
<span style="font-family: Arial;"></span><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX1NyXng2BAyKGW-L0L1q6idGZayrVa7fghlvZYE8NIJsxXQkHBST1r-mdyM5KNVywmE1yNS0GuH1jt0hURz7DBQwWR5Y-X-zL7szBcbLpYHgQnl-exmpnQ0s9dDLBrG4pCz8cfYh9ow/s640/blogger-image--1938026212.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX1NyXng2BAyKGW-L0L1q6idGZayrVa7fghlvZYE8NIJsxXQkHBST1r-mdyM5KNVywmE1yNS0GuH1jt0hURz7DBQwWR5Y-X-zL7szBcbLpYHgQnl-exmpnQ0s9dDLBrG4pCz8cfYh9ow/s640/blogger-image--1938026212.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pictures with Miles just moments before the incident. </td></tr>
</tbody></table>
<div class="separator" style="clear: both;">
<span style="font-family: Arial;"></span><br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMDI-DlvIIRjYTM0F9k_c77_E3-4_I445MxY21g9orQrVJn6K1JMuEE_gAMvZQgZRNfZvcFeKEbOxGWkkg-ldt69e68G4C_uBVgZwj-qQbNWExp_dQ5-6nB8wqFJcat-XHQyp2JJAtmA/s640/blogger-image-419449882.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMDI-DlvIIRjYTM0F9k_c77_E3-4_I445MxY21g9orQrVJn6K1JMuEE_gAMvZQgZRNfZvcFeKEbOxGWkkg-ldt69e68G4C_uBVgZwj-qQbNWExp_dQ5-6nB8wqFJcat-XHQyp2JJAtmA/s640/blogger-image-419449882.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pictures with Miles just moments before the incident. </td></tr>
</tbody></table>
<div class="separator" style="clear: both;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">While taking photos, Bryce asked me to help him change the
car’s oil in the garage. As I walked out, I heard Miles’s pulse oximeter
alarming. Miles alarms so frequently that I didn’t think much of it. There was
a nurse by his side so I assumed she knew how to handle it. That moment is
frozen in time for me. I wish I had walked in sooner. </span></div>
</div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">After hearing the alarm continue for awhile, I walked in the
living room to see my friends standing horrified and the nursing bagging Miles.
I walked up to see him blue and lifeless. His oxygen levels were at 3% and
heart rate was dropping. I remember yelling for someone to call 911 and I ran
to the kitchen and dialed myself. My hands were shaking but I knew I was moving
quickly. The operator asked several questions. Was he breathing? Where do we
live? How old is my son? Is someone performing CPR? I screamed for Bryce to
come in and get an oxygen tank and his face changed as he ran in the house. He
knew what was happening. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I was transferred to another operator to repeat the
questions. I started crying into the phone. “She isn’t bringing him back! Pease
hurry!” His sats were at zero now. The nurse kept saying the same thing, “Come
on Miles! Come on baby!” She was shaking his unresponsive body. She asked my
friends to flick his feet but they were paralyzed at what was unfolding. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I threw the phone to Jessica and took the ambu bag away from
the nurse. I squeezed it and felt no resistance. I began chest compressions. I
heard Bryce yell, “Check is trach!” That’s when I look down to see his trach dangling
around his chest like a necklace. The nurse had been bagging him for about 3
minutes without an airway. She never checked. For a moment, I thought it was
too late. I moved into action. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">“His trach is out!” I screamed. I grabbed another trach,
opened the package, pieced it together and put it in Miles’s neck. My baby’s
lips were purple. His eyes were in the back of his head. Life was gone. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">My husband was struggling to get the oxygen tank going. He
asked for help and his voice was shaking and cracking. I began bagging Miles
while I held his trach in place with my other hand. I stopped every so often to
do chest compressions. Nothing. I tried again. “Please come back Miles!” I
begged him. Nothing. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The visual of my tiny baby. Purple now. Beyond struggling.
Given in to defeat. It is burned in my brain forever. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I thought I heard sobs behind my but I never turned from
him. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I slowly saw color enter his face. First blue, then white,
then pink. I heard the nurse say, “He is coming back up.” I just continued
working on him. He began having a seizure or temors from lack of oxygen. His
hands were shaking and he stared blankly. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">EMS arrived and flooded into the room. At least a dozen of
them. They started assessing Miles. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I asked the nurse to put his old trach ties on. She could
not do it. I asked an EMT to hold the trach so I could put the ties on. I got
them on quickly but as reality was setting in, I saw how much my hands were
shaking. As soon as they were on, I saw how loose the nurse had put his trach
ties on and I knew that’s why this whole scenario happened. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Miles had color now but still no life to him. His eyes
stared blankly. Was he gone too long? How long had it been? I knew he had been
without oxygen for almost five minutes. <i style="mso-bidi-font-style: normal;">He
must have brain damage,</i> I thought. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Bryce came to our side and said in in the sweetest voice, “Hey
Miles. Hey Buddy.” Miles turned and looked at him. His eyes had life!</span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I heard Weston crying. He woke up to the chaos and probably
felt terrified. Jessica brought him in our bedroom to calm down. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I felt a pat on my back from the EMT. “You saved him mom.”
Another EMT stood in front of me. “Yes you saved him.” She said. I finally let
go of the ambu bag and got up. I saw for the first time how many people were in
the room. I walked straight to Bryce and cried in his arms. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The paramedics assessed Miles but we all decided not to send
him to the ER. He clearly wanted to go to sleep and he ended up sleeping a lot
the next 24 hours. Two police officers asked me questions and eventually
everyone was gone. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The event has replayed over and over in my head thousands of
times. Of course, when I reported it to the nursing company, our nurse blamed
us for the event. She said we were poking Miles’s shunt. It is clear she is
making excuses because she made a mistake about the trach ties but I don’t
blame her. People panic in these scenarios. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I did ask her later why she had the ties on so loose and she
said she knew they were too loose but she hadn’t gotten around to tightening them.
She said she had a, “fat finger, small baby neck scenario” so she had trouble
getting them on. </span></div>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">
</span><br />
<div style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I am in the process of fighting the state of Arizona about
Miles’s nursing hours. They want to cut him from our 112 hours a week, to 54
hours a week. This is the minimum a ventilated child can be given. They want
Miles to have minimal care. It’s heartbreaking but I’m not a mom that is afraid
to fight the good fight. It’s my full time job right now. Lefebvres VS. The
State. Bring it on.</span> </span></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com1Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-85127372912769863852015-02-08T22:52:00.000-08:002015-04-08T23:04:44.223-07:00If I Were Being Honest<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Many parents of special needs children share <a href="http://miraclesformiles.blogspot.com/2014/10/welcome-to-holland-by-emily-perl.html" style="font-style: italic; font-weight: bold;" target="_blank">this poem</a><b style="font-style: italic;"> </b>by Emily Perl. It’s
really encouraging because it gives your path a new feeling and new meaning. It
just makes sense and states feelings in a way most of us cannot. We all want
our life to be a trip to Italy and when we land in Holland, we have to
appreciate the scenery. We have to watch people taking their trips to Italy
while we learn to smell the tulips and build an appreciation for Holland. I was
ready for the slower pace of Holland. I was ready to give up the dream of
Italy. But how on earth did we end up in Haiti? I didn’t read that anywhere in
the poem.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Bryce and I have joked about our move to Haiti throughout
this process. Joking is how we feel normal. But if I were to be honest with myself,
Haiti is how this feels many mornings when I wake up and remember why my son
isn’t home with me. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">As our plane departed for Italy, it took a detour to
Holland. We looked out the airplane window down at the landscape of Holland and
thought to ourselves, “Ok, we are fine with this. Let’s stop here and we will
love it and never try to leave. We promise.” But the plane flew over Holland
and turned south. It kept flying and flying and flying. Where are we going? It’s
getting hot. We are getting uncomfortable. Where are we landing? Say what?!? We
are in Haiti. Oh hells no. I did NOT buy that ticket. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It’s harder to find the beauty in Haiti. Yeah sure there are
beaches, but come on, the storm has taken its toll on the former white sand.
The food is good, but it’s too different and gives me a stomach ache. The
people are courageous and welcoming, but they have suffering in their eyes. Am
I a Haitian now? There is no return flight. Forget Italy, what I would give to
have ended up in Holland. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I get to find beauty in the calloused, the broken and scraps
of former homes left after the storm. As callouses smooth out, they become
tough and resilient. As our stomachs get used to the new tastes, they start to
desire the cuisine and find ways to cook the food. As we tear through the
roughage, we pick up the pieces of our old homes that meant something to us,
and we build new homes. Haiti has guts. It has character. It has #1 bestseller
stories. Frankly, Italy and Holland couldn’t last a day in Haiti. <o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixKshYx_HuZJuYmuftUFYkAl8zaOCJUDnTmHi8x95xlJAcvcncRhS-MxCr9s3ZNARJ1PulybhO83H2hU50KZMu4HDH5EYTPicrWZCKEkilKP-yB1FDGVE-cDnoIT1Cs7p55kNJp-ycUg/s1600/IMG_4306.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixKshYx_HuZJuYmuftUFYkAl8zaOCJUDnTmHi8x95xlJAcvcncRhS-MxCr9s3ZNARJ1PulybhO83H2hU50KZMu4HDH5EYTPicrWZCKEkilKP-yB1FDGVE-cDnoIT1Cs7p55kNJp-ycUg/s1600/IMG_4306.JPG" height="320" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<br />
<div class="MsoNormal">
<br /></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com1tag:blogger.com,1999:blog-4698202379335650559.post-82843480196577556042015-01-17T21:13:00.000-08:002015-01-17T21:27:13.725-08:00Whose Side Am I On Anyway?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIntFql0R5AShKl4d3Em21LCzgIvKXziOgSQvDq8ZgrD_W3j5QTUy1ZqGUZwRF6TEg1CvV5ozVzpVrZrqnRjqY2_FIv1WJDnEIgas9kbtcPg6QkFvCWlRAef_FjAdCEClPxDRpcExaSA/s1600/10917372_10104620784198321_761817672422951270_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIntFql0R5AShKl4d3Em21LCzgIvKXziOgSQvDq8ZgrD_W3j5QTUy1ZqGUZwRF6TEg1CvV5ozVzpVrZrqnRjqY2_FIv1WJDnEIgas9kbtcPg6QkFvCWlRAef_FjAdCEClPxDRpcExaSA/s1600/10917372_10104620784198321_761817672422951270_n.jpg" height="320" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">This has been a fascinating process of heartbreak, struggle,
acceptance, peace, joy and fear. And not necessarily in that order. I truly
thought I was in a good place. I was ready. Miles is coming. I have had false
labor several nights now so the bags are packed and the birth plan is printed.</span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Yet I started to get more emotional. I felt a lot more
stress. I had what I would describe as small panic attacks. I was scared and I
wasn’t sure if it was because of Miles’s disability or just because I was
having another baby. I went on acting normal and functioning the same as usual,
but I was shorter with my husband and had less energy for my son. Something was
happening and I just didn’t see it coming. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I ended up picking a fight with Bryce one night. We had been
having a lot of tough conversations about a plan to become financially self-sustaining
in this seemingly impossible scenario. All the help was putting Band-Aids on
something bigger and the options we began discussing upset me tremendously. Our
main option was for me to go back to work full time. Even saying the words made
me bawl hysterically, not because I don’t like working (I actually miss it),
but because I couldn’t stand the thought of being away from my sons when they
need me. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I have read so many blogs of other Spina Bifida parents in
this exact same scenario. It’s one of the most expensive life-long birth
defects so nothing we are experiencing is abnormal. We went from living life
simply and comfortably, to feeling like we are drowning. I believed that the
fear of this is what was causing my stress but it wasn’t. Finances have never
consumed me and I’m not very materialistic. I don’t care about those things and
I’m not afraid to go without. I am just so appreciative to God for the beautiful
life and family He has given me. There was something different gripping my
heart and Bryce identified it. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I had switched teams. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">We clung hard to God when we received Miles’s diagnosis and
there was no doubt I could not have gotten through that time on my own. But as
months went on and I accepted his disability and the possibility of worst case
scenarios, I forgot that I still needed God. I became comfortable and complacent
and things were back to normal again. The birth of Miles was still far away
enough that I didn’t have to be overly prepared but I was far enough away from
the initial news that I had time to accept. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">As the approach of his due date came near, the realizations
became clearer. My son has a disability. He doesn’t perform well on tests and
we aren’t sure what the problem is. I won’t get to hold him when he is born. This
is terrifying and I don’t know what our new life will look like. I stopped
standing next to God looking at fear and I began standing on fear’s side
looking at God from a distance. I had switched sides without even knowing it.
We prayed for God to bring us back on His side and the next morning I woke up
feeling like a different person. No tears, no anxiety, no distrust. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">None of this means that the fear doesn’t still exist. It’s
present but I’m no longer on its team. Fear is on the other side of the battle
field and I will fight it with fury because it steals joy. Nothing can take joy
away from having my son. No amount of money. No diagnosis. No nasty doctor. No
discouraging ultrasound. No sacrifice. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I’m back on the team of hope, joy, faith and insurmountable love.
I know now that God wasn’t going to let me have Miles until I learned this
lesson. </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: #333333;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i>"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you."</i> -Deuteronomy 31:6</span></span></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com2Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-78445971127392718352015-01-12T12:41:00.000-08:002015-01-12T12:41:00.872-08:00A Little Patch of Grass<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">After our surprise hospital stay at 32 weeks pregnant, we
have known that Miles does not look very good on Non Stress Tests (NST’s). I
have asked many times if there is something else wrong with him and the answers
have varied, but mostly the answer is <i>we
don’t know. </i>Since then, I am required to get a Biophysical Profile ultrasound
twice a week. This ultrasound looks for fine and large motor skills, amniotic
fluid levels and he has to practice breathing for 30 seconds in a 30 minute
period. At every test, he waits until the 29<sup>th</sup> minute to start
breathing. Every time I ask God to show us he is healthy and to make him breath
if he is actually ok. Every time he has passed all the tests, until today. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">At today’s ultrasound, Miles wouldn’t move at all. He wouldn’t
breath. The tech was almost violently shaking my abdomen, but still nothing. I
wish I could say this surprised me, but nothing does anymore. The doctor
decided to follow with an NST which was pretty unnecessary to me since I
already knew what would happen. He didn’t do anything during the NST either.
Normally, all of the results would send me back to the hospital but there is an
overall sense of <i>what’s the point?</i> I need
to have these tests redone tomorrow and I have a feeling if they are the same,
I will be in the hospital again. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">When the medical staff talks about my son, they have a sad, solemn
look on their faces and don’t look me in the eye. They use words like “Unresponsive,”
“Non Reactive” and “Under Performing.” They say things like “Wake up baby!”
None of these results are new or unexpected but today they just affected me
differently. The tears flowed easier today and fear gripped my muscles. All my
nervous habits have come to the surface. These words are describing a real
person. This is a real life. This is my son’s life. I want to believe that he
will be ok. Some days I truly believe it and some days I’m just convincing
myself. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">So many people have graciously and selflessly helped us
through this time. There has been emotional and financial support that we have
desperately needed. Eventually my parents couldn’t bear that fact that every
dime we have and that is given to us, just goes to doctor bills and all fun
things have gone out the window. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">For a long time I have daydreamed of having a patch of grass
in our yard for our kids. My parents paid for us to get this patch of grass but
it hasn’t been installed yet. I spend a lot of time staring at our dirt yard, fantasizing
about this little piece of life growing in it. I picture getting to watch my
boys play in this grass, watching them grow and hosting friends in our yard. I
used to imagine a life of jet setting and excitement but now I just daydream of
a little piece of grass in my yard. It seems like such a luxury now. Something
so simple will mean so much.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<br />
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Most people won’t understand what this grass will mean to
me. It has almost been a little token of hope through this all. When I picture
Miles at his healthiest, he is laughing and giggling in the grass and playing
with Weston. I have tried to pass the time of anxiety of serving others in
whatever way I am capable as I have accepted so much service lately. But in my
quiet moments, I stare at this yard and imagine what is to come. </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivjgl6He-BbaTA2VDcyrnXofG-51RDaHbg4vR25npG0vvY9gxFs7rLNIRvRtxqanjC_7k8KFTgXgcfB0Nf-_XM2GwB_wa-QSdwKMs-4FG1pG1TolkJ0pL_FQZW1UfV7cyBCE5VVvUx2Q/s1600/IMG_3885%5B1%5D.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivjgl6He-BbaTA2VDcyrnXofG-51RDaHbg4vR25npG0vvY9gxFs7rLNIRvRtxqanjC_7k8KFTgXgcfB0Nf-_XM2GwB_wa-QSdwKMs-4FG1pG1TolkJ0pL_FQZW1UfV7cyBCE5VVvUx2Q/s1600/IMG_3885%5B1%5D.JPG" height="239" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com0Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-51697950700314737802014-12-04T12:11:00.000-08:002014-12-04T21:21:49.541-08:00Just an Ordinary Girl<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRDj_ZeQLCBSimAHplY6ikugLJgPTM3fatn_Aic_F2j636akrv-PpDkJs4pHZ7wDybW7xXcTi5mzXaqW3CKXLr3LTKin7EqdzSYtap0Us0OYPN95jz2s4TfTjmVfsZitfi7SUexAi12Q/s1600/allison08-edited.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRDj_ZeQLCBSimAHplY6ikugLJgPTM3fatn_Aic_F2j636akrv-PpDkJs4pHZ7wDybW7xXcTi5mzXaqW3CKXLr3LTKin7EqdzSYtap0Us0OYPN95jz2s4TfTjmVfsZitfi7SUexAi12Q/s1600/allison08-edited.jpg" height="320" width="186" /></a></div>
<br /></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I had a MOPS (Moms of Preschoolers) meeting today at
Scottsdale Bible Church. A fellow mommy beautifully performed one of my
favorite Christmas songs by Amy Grant, “Breath of Heaven.” I remember as a
young girl, playing this song over and over again every Christmas on a cassette
tape. It gives a different perspective on the Christmas story of a frightened
young teenage girl that has been told she is going to give birth to the Savior
of the world. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Today we were reminded that Mary was just an ordinary,
humble girl that loved God. She was not rich or royalty, nor did she have
superpowers. She was just a person that God specifically chose to carry out His
plan. Parts of her life story we not glamorous at all, but it had significant
meaning to the world.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">God chose me to carry one of His children. He orchestrated
life in a perfect way so I get to be the mother to Miles. My story is not as
grand as Mary’s, but I listen to this song differently now and can relate to
Mary as a scared, ordinary girl, wondering what is ahead and if I am the right
person for the job. In the song, she says: <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">“Do you wonder as you watch my face<br />
If a wiser one should have had my place?<br />
But I offer all I am<br />
For the mercy of Your plan<br />
Help me be strong”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Every single day, something new terrifies me about what is
to come. And yet I feel at peace knowing that God doesn’t expect me to be
extraordinary. He already knew all of my imperfections when He picked me for
the job. None of this is about how well I do here on earth by mommy standards.
It’s about preparing my sons for eternity and teaching them about Christ. It’s
about living a biblical life and loving people. That’s really all I need to do.
I’m guessing Mary was a great mom to Jesus, but probably not perfect because
she was human. And God chose her just the same.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><b>“Breath of Heaven” Amy Grant</b><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">I have traveled many
moonless nights<br />
Cold and weary with a babe inside<br />
And I wonder what I've done<br />
Holy Father, You have come<br />
And chosen me now to carry Your Son<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">I am waiting in a silent
prayer<br />
I am frightened by the load I bear<br />
In a world as cold as stone<br />
Must I walk this path alone?<br />
Be with me now, be with me now<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">Breath of Heaven, hold
me together<br />
Be forever near me, Breath of Heaven<br />
Breath of Heaven, lighten my darkness<br />
Pour over me Your holiness for You are holy<br />
Breath of Heaven<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">Do you wonder as you
watch my face<br />
If a wiser one should have had my place?<br />
But I offer all I am<br />
For the mercy of Your plan<br />
Help me be strong, help me be, help me<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;">Breath of Heaven, hold
me together<br />
Be forever near me, Breath of Heaven<br />
Breath of Heaven, lighten my darkness<br />
Pour over me Your holiness for You are holy<o:p></o:p></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: 'Trebuchet MS', sans-serif;">Breath of Heaven, hold me together</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">Be forever near me, breath of Heaven</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">Breath of Heaven, lighten my darkness</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">Pour over me Your holiness for You are holy</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">Breath of Heaven, Breath of Heaven</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">Breath of Heaven</span></div>
<div class="MsoNormal">
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span></div>
<br />
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/TOQRtYYERGo?feature=player_embedded' frameborder='0'></iframe></div>
<br /></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com2Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-77614597504121656132014-11-10T10:39:00.002-08:002014-11-10T11:43:31.667-08:00Keeping Hope Alive<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It’s a really hard question to answer. “How are you guys
doing?” We get asked every day and I love that people don’t forget that it’s on
our minds constantly. Most days we are doing really well. Life has continued on
and I’m not at a difficult point in pregnancy. I am 27 weeks along, so for me
this means a doctor’s visit about once a week (4 hour visits). I can still
chase Weston around and roll over at night and my friends are throwing a baby
shower. It’s a fun stage. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">But I also tell people it feels like a calm before the
storm. Starting in a few weeks I will need to go to the OB 3 times a week and
the office is an hour away. I still have to pick more specialists for Miles.
Many bills are close to their past due point. And Miles hasn’t been born yet.
Attempting to wrap my mind around the pain I will feel when he is taken away
from me in his first few hours of life is incomprehensible. Knowing how serious
his surgeries are and that there is chance I could never see him again. What if
I don’t have any pictures of him? What if I picked the wrong hospital? I try
not to spend too much time thinking of these things but they are all just
around the corner. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">There is a reason God can see the future and we can’t. If we
could, maybe we wouldn’t walk the road we are supposed to, knowing that fear is
ahead. Maybe we would never turn the corner knowing what is there. God knows
our human emotion would keep us from venturing into the unknown and we would
stay snuggled in a point of safety and security. But God requires more of us.
The fact I even know hard things are around the corner is more than many people
know in life. It’s an odd feeling. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">A couple weeks ago, Bryce, Weston and I went to Washington
to see my family. We had an incredible time enjoying fall- football game, apple
picking, stomping on leaves and drinking hot chocolate. My mom’s friends had a little
shower for Miles and I felt so excited to have him arrive. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYj0xGbxLQ-uitQvFYxobn7Nm9vosXD-47Lk-WCtLNkaPH5FRdnRnPPXZdiCSwP4gbgLvkZezQwG0dC_DNbfJL32DCIubeRuNHEZgh0Vapa2LVjqlH6p45Ye57TfIka68nfVzWEVP74w/s1600/IMG_2770+-+Copy.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYj0xGbxLQ-uitQvFYxobn7Nm9vosXD-47Lk-WCtLNkaPH5FRdnRnPPXZdiCSwP4gbgLvkZezQwG0dC_DNbfJL32DCIubeRuNHEZgh0Vapa2LVjqlH6p45Ye57TfIka68nfVzWEVP74w/s1600/IMG_2770+-+Copy.JPG" height="320" width="213" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8Hud1ZzRytaXKwKaV1snXY87IRLxf5fblTHtx-GFPfn6Z1oCEuhFbT_A8Jd9XDIRemJqbw1ftrwhvJaSB55Mzp6blUJ4g4CyCTomuCT_WJOYxrnLMFk8ESpEKsd_lp7peaCsm0_oVpw/s1600/IMG_2673+-+Copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8Hud1ZzRytaXKwKaV1snXY87IRLxf5fblTHtx-GFPfn6Z1oCEuhFbT_A8Jd9XDIRemJqbw1ftrwhvJaSB55Mzp6blUJ4g4CyCTomuCT_WJOYxrnLMFk8ESpEKsd_lp7peaCsm0_oVpw/s1600/IMG_2673+-+Copy.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Weston- 18 Months Old. </td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqL4cHNzUbmN7lwCwZZRxwbQmrg5afU8R27llbpKXwpUi34V4K4djbyJOAc6VPUTnc6WT-hoBTSWcw0Yh9bknSXHlFnXrgKDV5PNZ3fNYu3rPw_bM_KGfMLP_bI5OGUUaOWrhxmP2Veg/s1600/IMG_2730+-+Copy.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqL4cHNzUbmN7lwCwZZRxwbQmrg5afU8R27llbpKXwpUi34V4K4djbyJOAc6VPUTnc6WT-hoBTSWcw0Yh9bknSXHlFnXrgKDV5PNZ3fNYu3rPw_bM_KGfMLP_bI5OGUUaOWrhxmP2Veg/s1600/IMG_2730+-+Copy.JPG" height="213" width="320" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKU3DhMkhzZNxD71xKmJHyOEGKpDYub8-bWgs9wHDO1iItuX1veInXT6rFW_ABjjVBHh6kScbK1nOcx7FyAbsmoN0PF_PPFHLvDxgCGu_yERh3anH7mM9f9GjCEHAnjCjTS02GGZsL_Q/s1600/IMG_2755+-+Copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKU3DhMkhzZNxD71xKmJHyOEGKpDYub8-bWgs9wHDO1iItuX1veInXT6rFW_ABjjVBHh6kScbK1nOcx7FyAbsmoN0PF_PPFHLvDxgCGu_yERh3anH7mM9f9GjCEHAnjCjTS02GGZsL_Q/s1600/IMG_2755+-+Copy.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Favorite word is "Apple"</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVYCQpCW4un92XlVyUB-Dc5l6Szu9Nt3-LcU6TU1ixSaVDYETuaOU6pmDm9HLIDcy7V90qSo3-0Mk0EKBFSiVp56otao34j-VvLZdJd_7onYruRypgYytlYwUS1lYkBEt_06SeX2Gcyw/s1600/IMG_2799+-+Copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVYCQpCW4un92XlVyUB-Dc5l6Szu9Nt3-LcU6TU1ixSaVDYETuaOU6pmDm9HLIDcy7V90qSo3-0Mk0EKBFSiVp56otao34j-VvLZdJd_7onYruRypgYytlYwUS1lYkBEt_06SeX2Gcyw/s1600/IMG_2799+-+Copy.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">26 weeks pregnant with Miles</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">On our drive back to the airport I received a call from my
doctor’s office. I had gotten a genetic test done the week before called the
MTHFR. It looks for a certain hereditary mutation in an enzyme that helps
people process B vitamins and folic acid. I had tested positive for this
mutation. To explain it as best I can, this means that my body cannot properly utilize
the mega doses of folic acid I had been taking to prevent Spina Bifida. In
fact, folic acid actually exacerbates this problem and makes me more depleted
of folic acid. So what is the solution to this? I would have simply needed to
take a different form for folate (the natural form of folic acid). I basically
just needed a different vitamin. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I flew home alone with Weston after finding this news out. I
had gotten the flu and had a high fever and it was one of the worst flights of
my life. At first I thought the news of the MTHFR was helpful because it shows
me what I can do differently in future pregnancies. But then the anger set in. I
had done pre-conceptual counseling before ever getting pregnant to specifically
discuss how to prevent Spina Bifida. I was told to take lots of folic acid. I
have seen dozens of high risk specialists over the past few years and no one
mentioned this simple blood test. In fact, they all told me to take lots of
folic acid. This is exactly opposite of what I should have been doing. I felt
failed by doctors. This is not a rare condition so why wouldn’t anyone take 3
minutes to mention it? Truthfully, my heart was shattered again. It was easier
not knowing why this happened. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It got a little worse after that. I had an OB appointment
and ultrasound the next day. Weston got sick and Bryce had to take a day off
work to watch him while I went to the appointment. I don’t really like the
perinatal OB group I am with but I don’t have the energy to transfer doctors
again. On the ultrasound, Miles looked a bit worse than we originally thought.
It was confirmed he has a clubbed left foot. This happens because he is already
experiencing paralysis in the womb and cannot properly move his legs. The location
and size of his lesion (opening in his spine) is larger and higher than we were
told. It now opens over 4 vertebrae. The ventricles in his brain are already at
full capacity so if they increase even 1 millimeter, he already has hydrocephalus.
This happens because the brain is blocking the spinal fluid from flowing around
the body correctly so it builds up in the ventricles in the brain. These
children need to have shunts put in their brains to drain the fluid. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Of course the delivery of this news was terrible and insensitive
and very matter of fact but I have gotten used to that. I called Bryce to tell
him but on my way home I ran out of gas on the freeway. It just felt like the
enemy was taking his stabs. When I did get home, Bryce looked the most
depressed he has been through all of this. He said something that really broke
my heart, “I have lost hope.” <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">When you take someone’s hope away, you have taken
everything. You take the sparkle from their eye. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Many of the miracles we had asked God for were already
disappointed by these results. Though none of the news was shocking or
unexpected, it was enough to knock us back into reality. We were hoping Miles
could be a “best case scenario” and now he is falling into the bad scenario category
with certain things. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I could just see it in Bryce’s demeanor over the next couple
days. He was sadder. We took a night without Weston and went to dinner at
Maggiano’s together. We had a great night and talked about Miles the entire time
and what we are afraid of and what we think God’s plan is in all of this. It was
therapeutic to sit down for a couple hours and just talk. Bryce said it scared
him that he could go from a place of happiness to deep sadness so quickly. That’s
how this journey is going to be- up and down, then up then down, and up again.
We also admitted that initially we had drawn very close to God and gradually we
drifted away again and this is a reminder that we need to stay close. It’s in
human nature. We draw close to God, walk beside God, then run from God. Only to
realize we need to draw close again. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<br />
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">In it all, we just have to keep hope. When Miles is born and
his disabilities begin to unfold, we have to hope. When the news is so bad it
can’t seem to get worse, we hope. And then we praise God. We praise if the
answer to miracles is yes and we praise if they are no. When it feels like
there is nothing to praise, we remember what God has done for us and we dig
deep into our soul, and we praise. And when we see our beautiful son, perfect
in God’s eyes and in ours, we get on our knees and from the bottom of our
hearts, we praise. </span><o:p></o:p></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com0Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-61147395146341657832014-10-20T11:47:00.000-07:002014-10-20T11:49:02.589-07:00"Welcome to Holland" by Emily Perl Kingsley<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Many people have seen this poem, but it's an incredible portrait of the feelings that go through a parent's mind when their child has a disability. </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3cwnHD6ULUyAgQlOjDtDHj5Fz_M6w-ms-HETExnSQ_HGNVjTx0VLlrbWOh4CNdNIpHHJzbi81PPf9vkkRayAoK4EhhgAvN3Wx12C3TNsFCEO2H35bEFXAbDAFb9upgjP9VmxZGYoRwA/s1600/holland.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3cwnHD6ULUyAgQlOjDtDHj5Fz_M6w-ms-HETExnSQ_HGNVjTx0VLlrbWOh4CNdNIpHHJzbi81PPf9vkkRayAoK4EhhgAvN3Wx12C3TNsFCEO2H35bEFXAbDAFb9upgjP9VmxZGYoRwA/s1600/holland.jpg" height="128" width="320" /></a></div>
<div>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">"Welcome to Holland" by Emily Perl Kingsley</span></div>
<div>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……</span></div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.</span></div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”</span></div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”</span></div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.</span></div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.</span></div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.</span></div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.</span></div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”</span></div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.</span></div>
<div style="border: 0px; color: #797979; font-stretch: inherit; line-height: 21px; margin-bottom: 1.5em; padding: 0px; vertical-align: baseline;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”</span></div>
</div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com0Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-12364463090601844222014-10-08T23:19:00.000-07:002014-11-10T10:45:12.587-08:00Ain't Nobody Got Time<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzWAyYFCWoznAuwIsv46cnlc7Q_ELL9BFHE1u5yGe9xjmCwv-gW_HfCBV-lFi0STx0YmrnmHHpjXmBV5c55Sg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<div class="separator" style="clear: both; text-align: center;">
We just love to dance at our house. Weston 14 Months. July 2014.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">For about the past year, I had an overwhelming feeling that
difficult times were ahead. I was not sure why I felt that way or what it meant
but I continually told my husband about these feelings. I told him life seems
too breezy right now and it can’t stay that way. It’s sort of a morbid thought
and I think we just both wrote it off to mom paranoia but I find it interesting
now. I actually used to say, “Something bad is about to happen,” and that part
was not true. Nothing bad has happened to us. Nothing has been taken away. A
son is being given to us. Only wonderful things are about to happen. Though
will difficult times be ahead? Yes, probably. But I know now that my feelings
were wrong. I still think it was mom paranoia. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I have had two visions since we got our diagnosis of Miles’
Spina Bifida. I’ve never had visions before and frankly I barely believed
people when they told me they had one. I know the Holy Spirit touches us all
differently but I never thought I would be touched in this way. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">My first vision was of Miles dancing. I couldn’t see whether
he was standing or in a wheelchair or what he looked like. I simply knew it was
him and I knew he was dancing. My second vision really made me think. I truly
do not know if I was sleeping or awake when I had it. It felt like something in
between. I was standing behind Jesus and I was afraid. Jesus was directly in
front of me, fighting Satan with a sword. Satan attempted to get at me in every
opening, but Jesus blocked every stab and defended me. He was winning the
fight. Then I attempted to move away from Jesus and crept to his side. The
farther away I went, the harder it was for Jesus to protect me. He was reaching
with his sword, struggling to block each blow but Satan’s stabs were coming
closer and closer to me. Christ was worried and saddened that I was just out of
arm’s reached. I ran back to Him and felt safe again- protected and guarded
from the stab of the enemy. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">That was a powerful vision. It applied to so many aspects of
my life but the main reason I needed it was to see the fight Jesus is putting
up for me and Miles every moment of the day. I need Him so much. In moments I
think I don’t need God’s protection, I am vulnerable, weak and alone and He
can’t help me. I have to stand behind my God. When I’m afraid to have Miles and
sad for myself, I am inching away from God, separating myself for the
unspeakable joy He is bestowing on me. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The last month of processing the reality of Miles’s
disability has been very much like this. I inch toward God and become so
excited to meet my son. I have the “bring it on life!” mentality and I am
unafraid. Then I inch away from Him and I’m paralyzed with the unknown. What if
he is worse than we originally thought? What if something goes wrong in
surgery? What if, what if?<o:p></o:p></span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<br />
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I believe this is part of a normal grieving process. There
are those days where you get your breath back and think, <i>Wow how far I have come! </i>And sure enough, a couple days later you
backslide into a special little place I’ve named “The Pit of Despair.” Yet the
truth is, with every step forward and inch toward God, The Pit seems like a
more distant place, a silly place really. Who on earth hangs out in The Pit?
What was I doing there? There is a bright sunny sky outside of The Pit. I’m
never going back there. Oh what did you say? The Pit is having an awesome party
tonight? Sign me up, I could use a good party! </span><o:p></o:p></div>
</div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">And so it continues. </span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><o:p></o:p></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I am truly amazed at the drastic change from where I was
emotionally on September 5, 2014 to where I am right now. That’s how I know I’m
moving forward. I can look at those older posts and feel like a different
person reading them. Emotions are temporary and ever changing. Our bodies are
temporary and will be restored one day. Hard times come and hard times go but
there are so many permanent definites in our lives. That’s what drug me out of
The Pit. That’s what makes me put my big girl panties on each morning and do
regular things. My lesson learned in the past month:</span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<br />
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Ain’t nobody got time for The Pit. </span><o:p></o:p><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn-ev2iZ3KAwYNP5QRNECqFSiUJ0-fdZM_PpfLjnHNrbObkbd_WIstnyePGObS2nwZjTxJPVHLciwEtIunsIbFVJzNe5TXr1s_QITtbmU7ClRebIiZPrP0tXQ6gyq6nBHw7iakXVQ4yA/s1600/time.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn-ev2iZ3KAwYNP5QRNECqFSiUJ0-fdZM_PpfLjnHNrbObkbd_WIstnyePGObS2nwZjTxJPVHLciwEtIunsIbFVJzNe5TXr1s_QITtbmU7ClRebIiZPrP0tXQ6gyq6nBHw7iakXVQ4yA/s1600/time.jpg" /></a></div>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com1Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999tag:blogger.com,1999:blog-4698202379335650559.post-49718400124049560072014-09-20T23:03:00.000-07:002014-10-16T23:12:42.154-07:00Inutero Surgery: They Have to Take Me<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF951-Xczl_uVWfKbkWTBoW5X6t7MskKTLFjEDGKftDm_ByVG52Z_sZQswH20cfJpfB_VjU3Gm-ebiMepIBozpJej46xntq3gEs-QK9wwbJX42b0gwauHVmnJ9cQa9umTWGuBMFIHx1A/s1600/IMG_2953.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF951-Xczl_uVWfKbkWTBoW5X6t7MskKTLFjEDGKftDm_ByVG52Z_sZQswH20cfJpfB_VjU3Gm-ebiMepIBozpJej46xntq3gEs-QK9wwbJX42b0gwauHVmnJ9cQa9umTWGuBMFIHx1A/s1600/IMG_2953.JPG" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Showing Off my 20 Week Pregnant Belly</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">When I became pregnant with Weston I was candidly opposed to
genetic testing. Why would I make myself worry through a pregnancy? I could see
preparing for things that require surgery or immediate attention, but if there
is nothing that can be done, than just wait a few more months to find out.
Finally a nurse explained to me that people go through all these tests because
they sometimes want to end their pregnancy. Ohhhhhh, that never crossed my
mind. Ok now I REALLY don’t want genetic testing. EXCEPT, for Spina Bifida.
Since my sister, Andrea, has Spina Bifida, I was aware of the inutero surgery
they can do on babies and to me it was something worth considering if I was
ever presented with that situation. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Well here I am! Situation presented! I did get a genetic
blood test for Weston and Miles for Spina Bifida only. The tests were accurate
both times. I am grateful I got them because I have had time to seek out the
absolute best care for my Miles. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The first couple weeks after diagnosis I desperately
scrambled to get the inutero surgery done. In this procedure, performed between
20-25 weeks of gestation, a large team of surgeons puts the mother and the baby
under sedation (with separate methods) and opens the uterus. A neurosurgeon
closes the opening the baby’s back and the baby is put back into mommy. The
idea is that the spinal cord and nerves have less time in the womb to be
exposed to amniotic fluid, which is damaging. Hopefully, things can grow better
by being in a safer environment. That’s the short version at least. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">When we got the diagnosis, I was told that Miles may be a
good candidate for the surgery because it looked as though he had an S1 lesion.
This indicated which vertebrae the spinal defect had occurred and where the
opening is on the back. For Miles, it appeared on ultrasound that his was the
very top vertebrae in his sacral spinal region. This is a very typical lesion
location for Spina Bifida children and it is also the minimum level to qualify
for the surgery. Right after the doctor told me about the surgery, she said
that I would most likely not be considered because of my Type 1 Diabetes but
she would look into it. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The next morning my mom and I were making calls. I told her
I didn’t feel like making calls and she said, “You will be advocating for your
child his entire life, you may as well start now.” So I picked up the phone.
Phoenix Children’s Hospital was supposed to call me and guide me through this
with resources but I never once heard from them. I was on my own. I learned
that this specific surgery is done at two main hospitals, in San Francisco and
Philadelphia. It is still in a clinical trial phase and the risks are enormous
to mother and baby. The median birth age of these babies in 32 weeks (many born
earlier) and that can cause a multitude of other health problems. Many moms are
on bed rest from the time they get the surgery until when they deliver, all the
while on several drugs with awful side effects to prevent the uterus from
contracting and starting labor early. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Despite all the scary things I read, I wanted the surgery. I
would do anything for my son. All of my reading made it very clear that insulin
dependent diabetics cannot get the surgery. From reading what the recovery is
like, I did understand the reasoning for this. Type 1 Diabetes in a complicated
disease in itself and requires intense management. Blood sugars are affected by
many different drugs. Healing can be affected. The fetus is affected. It would
just be an added layer of risk that doctors aren’t yet willing to deal with. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">But I’ll be damned if I didn’t try! So I had every contact I
know in the medical field reaching out to these hospitals. My mom discovered
that Houston Children’s Hospital had, only 3 weeks before, done the first
orthoscopic version of this surgery. Meaning the mother did not need to be cut
open, therefore decreasing many risk factors. Aha! This is my surgery!!! Bryce
and I texted everyone and I asked them to pray for this conversation with
Houston Children’s. My best friend Jessica said, “They just have to take you.”
That’s the way I saw it too. The just had to. I would not take no for an
answer. I would pay any amount of money. They couldn’t get rid of me easily. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">From those phone conversations, I will say that I like
Texans. They were the kindest and most compassionate nurses I have talked to
yet, and they had cute accents. The head nurse of the neonatal unit spent a
long time on the phone with me. She asked me lots of questions and I apparently
gave the right answers because she said, “Your son may be a great candidate for
this! Let’s get you out to Houston for a work up.” Oh joy! I am THIS close!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">“Well, there is one more thing,” I paused. “But I’m afraid
to tell you because I know what you will say…I am a Type 1 Diabetic.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">“Oh,” she said, sounding really sad. “You don’t qualify
then. There is a hard line when it comes to Type 1 Diabetes because at any
point this could become an open procedure where they do cut the uterus open and
so we follow the same criteria as those hospitals. You did the right thing by
calling us. You had the right idea.” <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Heart crushed. I told her she was my last hope. She
apologized and said she hopes Miles does very well. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">This conversation with Texas happened within a couple days
after Miles’s diagnosis. I did still make attempts for the next couple weeks
through various avenues but to no avail. My mother left many messages with
specific surgeons in Houston but came back with the same answers. People had
medical contacts at Standford, University of Washington, this guy is the best,
try this hospital. But it came down to a few main factors. Only a couple
hospitals do this procedure and it takes teams of people and years of training
so a different hospital can’t just try it out. And they aren’t going to take a
Type 1 Diabetic. They just aren’t. We found out it is also done in Germany and
Brazil and Bryce and I started researching flights to these places. We had to
stop ourselves and take a step back. Maybe the “No” answer is actually the
answer to our prayer. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">From meeting other Spina Bifida moms, I got the names of the
top 2 pediatric neurosurgeons for Spina Bifida in Phoenix. Dr. Shafron at
Phoenix Children’s Hospital and Dr. Moss at Cardons Children’s Hospital. Bryce
took a day off work and we interviewed both. Of course we made a day of it and
treated ourselves to Texas Roadhouse afterward. Who wouldn’t?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Both doctors were not huge fans of the inutero surgery. They
both admitted there may be some benefits, especially with children not need
shunts after birth, but many have much more severe problems because of it, like
Cerebral Palsy. It brought me some closure. There were no more avenues to take
and no special contact that could magically get me in for this surgery. And the
truth is, it may not be the right choice for our son. So we moved forward with
preparing for surgeries after birth. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">More to come on how we picked our neurosurgeon. </span><o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com1tag:blogger.com,1999:blog-4698202379335650559.post-57389962953398432672014-09-16T21:09:00.000-07:002014-10-06T07:06:19.741-07:00A Letter From My Dad<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIDXrSd-8ZSpReupSUmivS3Dcx654KfzT84p4BB1j7-366jpSELLI-95aG0HWA5eLWMk8WA3h-u1wSeoKs4GxVRiD0Tocmc93EjaOSv5awU_EPuairtjkdqWA2W9x3kzGFFjyBaVFTXQ/s1600/330.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIDXrSd-8ZSpReupSUmivS3Dcx654KfzT84p4BB1j7-366jpSELLI-95aG0HWA5eLWMk8WA3h-u1wSeoKs4GxVRiD0Tocmc93EjaOSv5awU_EPuairtjkdqWA2W9x3kzGFFjyBaVFTXQ/s1600/330.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My parents, Drew and Priscilla, visiting us in Chicago. 2011. </td></tr>
</tbody></table>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">My dad sent us this email as some encouragement. The way my parents have loved my sister and me has made me realize what parenting and delighting in our children truly means. We have never for a second questioned how much we will love Miles. </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">They say you always marry your father, and in so many ways I did. Everything I love in Bryce and the way he puts Weston and me first is exactly the family man my dad is. My dad took me for long walks at night growing up and would teach me about the stars. He played "the age game" with me and told me stories of his childhood. He tucked me in every single night and fluffed my pillow like no one could. He cooked me breakfast every morning and made my school lunches. One time I told him that the other moms put notes in their kid's lunch boxes so he started writing notes on my napkins. When I was diagnosed with Diabetes, he was the one on the sidelines of my soccer games, waiting with a juice box in hand. He was, and is, an unparalleled dad. </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">This letter says it all: </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">September 8, 2014</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i>"<span style="background-color: white; color: #222222;">Good Morning Allison and Bryce,</span></i></span><br />
<div style="background-color: white; color: #222222;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i><br /></i></span></div>
<div style="background-color: white; color: #222222;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i>I'm sorry for what you are going through. We know what it is like. However, I want to leave you with some perspective. There has never been a moment in my life when I thought it would be better without Andrea. Having her has never prevented me from doing anything that I wanted to do. I don't feel short changed in anyway. I love her as much as I could love anyone, and consider her a complete blessing. You will feel the same way about Miles. </i></span></div>
<div style="background-color: white; color: #222222;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i><br /></i></span></div>
<div style="background-color: white; color: #222222;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i>There are lots of good people in the world, and you will have all the support that you need.</i></span></div>
<div style="background-color: white; color: #222222;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i><br /></i></span></div>
<div style="background-color: white; color: #222222;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i>Love Dad"</i></span></div>
MiraclesforMileshttp://www.blogger.com/profile/08270927293477393343noreply@blogger.com4Phoenix, AZ, USA33.4483771 -112.0740372999999932.6020036 -113.36493079999998 34.2947506 -110.78314379999999