Sunday, October 7, 2012

Spina Bifida Awareness Day 8 - Grant's Story

Dear Life,

This next boy is older than Kumaka...and I met his mommy on an online support group when I was still pregnant.  I feel very close to could be the boy thing...but it could also be that both of our boys have clubbed feet and they both have had SO MANY SURGERIES and CASTS to try to repair them.  Every time Kumaka's feet start going back I email Joy: "'s Grant's feet? Kumaka's are starting to turn in again."  Love this family!

"My fourth child Grant was born with spina bifida and just turned seven this September.  

I remember well the day I was told my baby wouldn't survive.  The doctor said he wouldn't survive due to the severity of his Arnold-Chiari malformation, and I sat there feeling like I was observing someone else as I tried to process the information.  My mom and sister were with me the day I received the news.  We were all wearing lavender (completely unplanned), and my sister, who was also pregnant and due a couple weeks before me, had just finished her appointment.  I am so grateful they were there!  I had felt so strongly something was wrong, and hearing it confirmed shook the foundations of my world, but their presence was grounding and comforting.

A couple days later at 24 weeks gestation, my husband and I saw a perinatologist at a hospital a couple hours away.  I looked at the little baby on the ultrasound monitor, and fighting back tears I whispered to Neil how much the baby looked like his older brother.  The doctor came in and observed our stricken looks and said the words, "It's just spina bifida," and our world shifted again.  Learning our baby would live after thinking he would not survive birth was something else to process.  It was a cautious optimism.  Our baby was going to live and need surgery.  I knew that, but there were all these unknowns, and the the onslaught of information was overwhelming, but I knew we could move forward.  

The rest of the pregnancy went by with many doctor visits, many unanswered questions, and the unknowns were the hardest things to deal with.  I found support and reassurance, though, in an online spina bifida forum and was anxious and excited to meet my baby boy.
Grant was born on his due date, and the moment he was here, none of the questions mattered anymore. I knew what to do as soon as he was in my arms, to be his mom, take care of him and love him with all my heart.  We began our journey. He had surgery within hours of being born to close his spine and place the shunt for hydrocephalus. He's had numerous surgeries since, but he's faced them all with an amazing capacity to smile and and resilience.
At seven years old, Grant is determined and adventurous. He is in first grade, and he loves gym class and recess.  He reads and plays wii and could play outside all day with the neighbors who are his age. 

He amazes me with his willingness to go everywhere in his chair. He braves the snow, rolls through the mud and puddles, and tries to go as fast as he can. He loves to pop wheelies and his poor chair takes a beating. If he can't get there in his chair, he'll climb out and crawl to get where he needs to go. If he can't get there that way, he gets his siblings or someone to help.  I remember worrying that my child wouldn't be able to play ball with his brother, but he does that and so much more.
I think there is a process as you accept your life is going to change dramatically when you hear the diagnosis of spina bifida, and I think it's messy, emotional, agonizing, painful, and scary. It's grief as all that you expected and hoped for is changed, but there is hope and beauty to the future you didn't anticipate.  Spina bifida is just part of who he is, who we are, and it's just part of our life.  That doctor who said it was JUST spina bifida was right.  At the time, I thought his phrasing was ludicrous, and now I know he was correct.  Spina bifida isn't this terrible monster, and though it comes with some huge challenges and obstacles, you learn you, your family, and your child will be up to living with "just" spina bifida.  In fact, it's a pretty normal life. :)

The best advice I can pass on to a parent facing a future with a child with spina bifida is grieve for the future you had planned and move on to the one that is waiting for you! It's awesome! :)"



  1. Great post and sch a cute kiddo!!

  2. I remember the first time I met this awesome kid. Actually, the whole family is pretty awesome! As someone who'd never been exposed to spina bifida, I was floored by Grants ability to get around. His family doesn't focus on the way he gets around, but rather let him ask for help if needed. It took a few minutes for me to realize he'd been crawling around for some time already. Grant was 4 years old the first time I met him. I had asked him if he needed help getting from the barn to the house but he told me he could do it. Three years later, I'm still amazed by this family.

    1. I love your response so much. So often people will assume these kiddos need extra's hard to just let them work it out...but then can do it! And it's amazing when they do it. :)


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