Thursday, November 9, 2017

I Use My Child’s Disability to Get Attention


An adorable picture of my son warming my heart before an MRI today? Or an evil ploy to build my own ego?
Up for debate. 

We have heard it all. Since opening up about our story over 3 years ago, there have been a plethora 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.

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.

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.

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.

ATTENTION.

“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 attention for it.”

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.

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.

And friends. Fellow moms. Special needs families. Grieving parents. I need you to know…

YOU HAVE MY ATTENTION.

My eyes are on you. My heart is with you. I feel what you feel. You will never feel shamed by me.

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.

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.

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. 


Thursday, September 7, 2017

One Dreamer’s Story


“You may say that I'm a dreamer, but I'm not the only one
I hope someday you'll join us, and the world will live as one”

-John Lennon
Our nurse, traveling with us to Flagstaff so we could take our son on his first trip.


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.

What do you do for a living? What makes your job challenging and unique?

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.

Where are you from and how did you end up in the United States?

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.

Why did your parents bring you here? Why didn’t they come legally?

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.

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.

What is DACA and how did you become a recipient?

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.

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.

Do you pay taxes?

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.

Since you and your family pay taxes, you must be able to receive benefits like a citizen correct? Like financial aid, Medicare, etc?

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.

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.

Did DACA change how it felt for you to live in the U.S.?

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.

*We take a break to cry. Our family, children and friends are huddled around Miles's nurse to hear her story.*

How does it feel to know our President has ended the DACA program?

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.


If you could educate people on your situation, what would you tell them?

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.

What’s your plan now?

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.

Would you or someone you know like to share their DACA story? Please contact me at allisonalefebvre@gmail.com

Thursday, January 12, 2017

Caleb's City ICU Tour and a New Diagnosis


Our first family photo.
I 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.

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.

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.

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.

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.

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.

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.

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.

“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.

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.

As I was in the ambulance taking him to our 4th 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.

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).

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.

John 10:10 says, “The thief comes to steal, kill and destroy. I come that you may have life and have it abundantly.”

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.

Thank God for the second half of that scripture.