Paying Hope Forward- A Letter To Our Doc

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.

“How can I have a healthy child? I’ve always wanted to have a girl.” I asked her.

“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.”

She commented that she had never seen a family so positive and light hearted.

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.  

"Dr. Kuhlman,

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.

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.

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.

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.

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.

https://vimeo.com/164765749

Here is another happy video of Miles.

https://vimeo.com/163583375

Sincerely, Allison Lefebvre"

Anticipatory Grief

Miles, 16 Months Old

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.

“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.

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:

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.

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.

You stay up all night; mind racing, searching for answers. And all day you just want to sleep and get through.

You numb your mind with TV because you can live in a world for a moment that isn’t…this world.

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.

You beg God to take you first. You know it’s selfish but you can’t outlive your child. You just can’t.

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.

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.

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.

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.

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.

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.

Your skin becomes so thick yet your heart is like paper mache.

You stop getting invited to barbeques, movie nights and parties. You convince yourself that they would have invited if they could have.

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.

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.

You know you are depressed to some level. But it’s not a situation that’s going away. You are forever changed.

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.

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.

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.

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.

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.

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.”

 

 

12 Things You CAN Say To A Special Needs Parent

Miles, 12 Months Old

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.

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.

1. It seems like God has given you a lot to handle and you are doing it beautifully.

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.

2. If I am ever in your shoes, I hope that I maintain the joy that you do.

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!

3. Your child is so beautiful. I would love to be educated on their disability.

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!  

4. You seem like you have a lot of love to give. You should have more children!

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.

5. Everything is going to be ok. I promise.

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?

6. Some days are really going to suck. But then most days are going to be filled with joy.

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.

7. There is nothing normal about your everyday life but there is a special meaning for your child’s life.

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.

8. That sounds really challenging but I can see the love in your eyes.

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.  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.

9. The suffering of children is hard to make sense of.

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.”

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.

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.

11. *HUG*

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.

12. You are a Super Mom.

Say this to every mom you know as much as possible! It gives people all sorts of warm fuzzies!

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.

Miles vs. Life

Everything can change in a moment.

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.

Pictures with Miles just moments before the incident.

Pictures with Miles just moments before the incident.

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.

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.

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.

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.

“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.

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.

The visual of my tiny baby. Purple now. Beyond struggling. Given in to defeat. It is burned in my brain forever.

I thought I heard sobs behind my but I never turned from him.

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.

EMS arrived and flooded into the room. At least a dozen of them. They started assessing Miles.

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.

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. He must have brain damage, I thought.

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!

I heard Weston crying. He woke up to the chaos and probably felt terrified. Jessica brought him in our bedroom to calm down.

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.

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.

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.

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.

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.

If I Were Being Honest

Many parents of special needs children share this poem 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.

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.

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.

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.

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. 

Whose Side Am I On Anyway?

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.

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.

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.

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.

I had switched teams.

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.

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.

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.

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. 

"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." -Deuteronomy 31:6

A Little Patch of Grass

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 we don’t know. 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^th 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.

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 what’s the point? 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.

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.

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.

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.

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. 

Just an Ordinary Girl

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.

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.

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:

“Do you wonder as you watch my face
If a wiser one should have had my place?
But I offer all I am
For the mercy of Your plan
Help me be strong”

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.

“Breath of Heaven” Amy Grant

I have traveled many moonless nights
Cold and weary with a babe inside
And I wonder what I've done
Holy Father, You have come
And chosen me now to carry Your Son

I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone
Must I walk this path alone?
Be with me now, be with me now

Breath of Heaven, hold me together
Be forever near me, Breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy
Breath of Heaven

Do you wonder as you watch my face
If a wiser one should have had my place?
But I offer all I am
For the mercy of Your plan
Help me be strong, help me be, help me

Breath of Heaven, hold me together
Be forever near me, Breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy

Breath of Heaven, hold me together
Be forever near me, breath of Heaven
Breath of Heaven, lighten my darkness
Pour over me Your holiness for You are holy
Breath of Heaven, Breath of Heaven
Breath of Heaven

Keeping Hope Alive

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.

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.

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.

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.

Weston- 18 Months Old. 

Favorite word is "Apple"

26 weeks pregnant with Miles

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.

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.

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.

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.”

When you take someone’s hope away, you have taken everything. You take the sparkle from their eye.

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.

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.

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. 

"Welcome to Holland" by Emily Perl Kingsley

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. 

"Welcome to Holland" by Emily Perl Kingsley

“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……

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.

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.”

“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.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

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.

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.

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.

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.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

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.”

Ain't Nobody Got Time

We just love to dance at our house. Weston 14 Months. July 2014.

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.

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.

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.

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.

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?

I believe this is part of a normal grieving process. There are those days where you get your breath back and think, Wow how far I have come! 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! 

And so it continues. 

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:

Ain’t nobody got time for The Pit. 

Inutero Surgery: They Have to Take Me

Showing Off my 20 Week Pregnant Belly

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.

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.

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.

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.

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.

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.

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.

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!

“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.”

“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.”

Heart crushed. I told her she was my last hope. She apologized and said she hopes Miles does very well.

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.

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?

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.

More to come on how we picked our neurosurgeon.