Tuesday, January 6, 2009

Living with Shattered Dreams


This post is a bit more of a personal one.

For those of you who have followed our story, you may have noticed the running theme of one shattered dream after another. I'm not sure if any of you can relate. I think our story is not exactly the norm.

Beginning with the initial shock during our first ultrasound (at 12 weeks), there was found to be a nuchal translucency, at which point we had to determine whether or not to find out what that meant. Emotions raced inside me, every fear I've ever encountered looked me in the eye. We underwent the CVS procedure to find out what the cause of this nuchal transclucency was. Our doctors said it was most likely that our baby would either have Down Syndrome or Turner Syndrome, and there was a good chance the baby could die in utero. The results came back telling us we had a completely healthy baby boy; no syndromes were discovered. We were much relieved and encouraged.

Fast forward 8 weeks to our 20 week ultrasound, typically an exciting time for new parents. We were happily expecting to see our baby boy, his tiny fingers, toes, hands, feet... Somewhere in the middle of the ultrasound, the doctor appeared concerned and began looking more intensely at our baby's face. Finally, after what felt like hours, he told us what he saw. A bilateral cleft lip and palate. My heart sank. I couldn't hold the tears back. Our boy had a cleft, and the most severe kind.

This began months of trying to process this news. I researched all I could, reading books, articles, pamphlets, trying to wrap my mind and heart around our son's condition. However, the ache never seemed to go away. With the news of every healthy pregnancy to the arrival of every 'perfect' newborn, my heart would once again revisit its pain. I was never mad at anyone for having a healthy baby. I never wished them the same kind of pain I was encountering. I was just lost, confused, grieving over and over the loss of MY perfect baby, the one I had always dreamed would be mine someday.

I have had to give up many dreams. The dream of natural childbirth. The dream of cradling my baby when he was first born. The dream of breastfeeding. Many, many dreams big and small have been ripped from my grasp, pried out from my fingertips and have drifted away to Neverland as I have stood helplessly watching them fade into the distance.

Our son spent his first five weeks in the NICU. I can't tell you how many trips I made to and from the hospital during that time. Sometimes they let me touch him, sometimes kiss his sweet face, sometimes hold him between the tests they were running on him. I often sat outside his bed as he lie underneath the bilirubin lights since he was so jaundiced, holding his tiny fingers. I remember the first time they allowed me to hold him skin to skin, his little body on my chest. He fell asleep on me. And when they had to take him away, he cried and cried and cried. I remember tears filling my eyes as the nurse put him back in his bed.

They ran so many tests on him during that time. There were a number of other anomalies they had found and the doctors were avidly searching for an answer. With every possible test, there was a possible diagnosis. Daniel had to finally ask the doctors to only report to us concrete findings, no more "hypotheticals", as it was too much for my mind and heart to handle. I ached with every possible diagnosis.

We finally were able to take him home. We were so relieved... until the reality hit. We tried every bottle possible and no matter what we tried, our baby wasn't able to take more than an ounce down at a given time, most of the time he didn't make it that far. So we learned how to tube feed him, sometimes we could leave the tube down, sometimes we had to put it down every feeding. The older he got, the more challenging feeding was. Sometimes I still get a bit jealous when I watch a baby take a bottle or breastfeed.

I took my baby in for his 3 month check-up with Dr. Bravo on April 7th. It was then that we received the news that he has an extremely rare syndrome - Simpson Golabi Behmel Syndrome (SGBS). There are currently less than 120 known cases of this syndrome. It often goes undiagnosed as it can be mild to severe in form. The more severe cases are the most studied. In most of the severe cases babies with Simpson Golabi Behmel Syndrome (SGBS) die prior to reaching two years of age, most often from heart failure or kidney tumors. We still have yet to find out the extent of what we're dealing with. My heart aches most days with the unknown.

Simpson Golabi Behmel Syndrome (SGBS) is an X-recessive syndrome. While I'm not entirely sure what this means, I know I'm the carrier of it. And this carries with it a heavy weight. I live each day knowing I gave my son a syndrome he has to live with the rest of his life, however short or long that life is. And I also live knowing he may be all I get, my one chance at biological children. I have a 25% chance of giving any other children this syndrome. I don't know if I can logically make that decision. We're not at that point yet, and honestly, it's too much for me to bear at this time.

People say "time heals all wounds." I beg to differ. Time simply passes. I think it's what we do with our time that either helps us, heals us or keeps us stuck where we are. My dreams have been shattered, my hopes dashed upon rocks, my heart broken open and spilled out, emptying itself drop by drop as I walk through each day. But I want to live. I want to give. I want to love. So while I may be broken and you may see my flaws as if in broad daylight... While I may live each day in uncertainty and you may question whether I have any direction... While some days I wake up and can barely get myself out of bed and you may wonder if I have what it takes... I won't stop. I won't give up. I won't sit by and watch myself wither away. I see with eyes wide open. I feel with arms wide open. I ache with a heart that is familiar with pain. And I'll love with everything I have.

My baby turns one tomorrow. My broken baby is a whole year old. I love you, Jackson.

16 comments:

Brad Whittington said...

Wow. Powerful and moving.

The Avilas said...

We love you guys.

wig said...

Jackson has changed you forever- thanks for being so real. Thanks for letting us journey with you- so beautiful.

Lisa said...

Oh Halle,thanks for being so honest. The last thing I see when I look at you is flaws. I see a brave, loving, giving wife and Mother. I soo wish we could go out for coffee together! You are amazing and you're doing an amazing job dealing with all the pain and heartache. I don't want to minimize the bad days, but from here that really is what I see. Thanks for sharing so much with us.

Sara said...

Halle...My heart is burdened for you but I know that God also cries at the imperfection and injustice. You are amazingly strong even in what you believe is weakness. Many people could not do what you have already done and still love, give, and hope. I pray for you and the family. I don't understand what you have gone through, but I do know that God knows and He cares much more than any of us can. Be encouraged...you are simply WONDERFUL!

Anne said...

Your honesty is beautiful Halle. I love you and please know that your family is in my prayers.

Joy Howse said...

Halle -
You are such a strong mama for all you have endured over the past 12 months plus. I know that God has such a special plan for you and the entire family. I know that I hae gained so much from my little guy and I appreciate you sharing your journey with us in such a real way.

Milly said...

overwhelmed by your love...

Davenports said...

we love you, halle. and that adorable boy and amazing husband of yours too. thank you for beng honest, open, raw, real, loving, humble, human and one of the most amazing mamas i know.
-sarah

Lindsay said...

i love you halle... thank you for pouring our your heart so openly through this journey...

Jessica said...

You are an amazing Mother and person. I am in awe of your strength.

Soderin Family said...

Thank you for your honesty Halle. You are an amazing mother. Never forget that. We love all three of you and pray for you often.

xoxo

drea

Fowler family said...

Wow, Halle, I totally have tears streaming down my face from reading this post. You wrote your thoughts and feelings so eloquently and honestly.

Thank you so much for sharing. You are a beautiful, wonderful mother to Jackson. I could "feel" it as I watched the video you made for him. Happy 1 year Jackson! Sincerely, Anna Fowler

PS- I found your blog via your cleftAdvocate post (I have two little boys with clefts).

Anonymous said...

Halle,
Your comments brought me to tears. I am a mother of three boys and nothing can prepare you for the first year as a mother. I can only imagine how difficult it must have been to go through it with a broken heart.
I am a student in college studying Cytogenetics. I was given an assignment to research a genetic disorder for a presentation in class. I chose SGBS because it facinated me on the molecular level. Finding your blog brought my understanding of this disorder to a whole new level. Thank you for being so candid about the experience. I wish you well and hope you can continue to treasure your beautiful family. You truly have a lot to be proud of.

Bethany said...

Hi, my name is Bethany. Jenny from "The Life I've Been Given" gave me your blog address. I'm so glad. I was so touched by this entry, b/c it mirrors my own experience. I have 3 healthy kids, then had a surprise pregnancy - Judah. I'm 31 weeks pregnant with a little one with a cleft lip and several other anomalies. I won't go into detail, you can look at my blog if you'd like, but the doctors expect some kind of syndrome. I just wanted you to know that I appreciate your transparency & honesty, and I'm relieved to read an entry like this - I'm not alone!!

shashank said...

Here is a link to more information about the genetics of Simpson Golabi Behmel Syndrome that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: http://www.accessdna.com/condition/Simpson_Golabi_Behmel_Syndrome/342. There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA