Expecting a Baby with Spina Bifida?

If you've found yourself here, chances are you're expecting a baby with Spina Bifida. Or maybe you already have a child with SB. When I first received Liam's diagnosis, I felt so alone...and devastated...and scared...and just plain mad. But four years into this journey of ours, I can honestly say I wouldn't change a thing. Okay, so yeah, if I could take it all away for Liam, I would. After all, don't we all just want to make life easier for our kids? But, for me, the lessons I've learned have been invaluable. Liam has taught me more in the last four years than I've learned in a lifetime, and he is my daily source of inspiration and strength. It is one heck of a roller coaster ride, yes, but the ups far outweigh the downs. 

I hope the following posts will help to inspire, comfort, and lift you up. My greatest wish is that they offer you a glimmer of hope, no matter how small it may be. 

Liam's SB Story, from sbstories.org:

Step by Step: Mommy's Letter to Liam

9.27.12

You did it. You finally did it! We have been waiting for this day for over three years. Three years! Three and a half years since those gut-wrenching words were uttered, words that changed everything: we’ve found some deformities. Today, what seemed like just an ordinary Thursday, you did something we once thought was impossible: you took your first steps.

Step by step we’ve made our way on this journey together – this journey that began almost four years ago, with a very anxious soon-to-be Mama staring in disbelief at a screaming YES glaring back at her. Almost four years ago since making that very long-distance phone call to Daddy saying, I have to tell you something, but I’m not going to be able to say the words out loud. Just one month shy of your third birthday, and you did it.

My heart was so full tonight that my body simply couldn’t take it. As I lay in bed, I heaved and heaved thinking about the gravity of what you had accomplished. I sobbed reflecting back on those first few months after receiving the diagnosis, when I couldn’t even look at a little boy on a bicycle, or a baby standing on his wobbly, little legs without feeling a tightening in my chest. Without feeling like I was suffocating. Guilt at that time was a tangible thing. Anger was palpable. My body had betrayed me.

It wasn’t until first stepping foot in the spina bifida clinic, when you were three weeks old, that I truly realized the severity of what spina bifida and hydrocephalus meant: wheelchairs and braces and catheters and shunts and surgeries. All of the books and articles I had read during the second part of my pregnancy couldn’t have prepared me for what met me that day: spina bifida at every age. It was like your entire life flashed right before my very eyes. I felt the wind knocked out of me walking into the clinic that day. Your Auntie Maura somehow sensed what I was feeling, and simply sat quietly next to me, while I tried to catch my breath before making my way to the front desk. But I didn’t know then what I know now.

And now here you are, standing on your own two wobbly legs. And here I am, knowing what I didn’t know then: that you are absolutely, positively who you were meant to be. You are perfect and bright and magical. You are an old soul in a young body. You have taught me and Daddy and our family more than we could have ever learned without you in our lives. Do you know that when your cousins play house one of them pretends to be a kid with spina bifida? Yep. It’s true. You have made clubbed feet and braces and shunts normal, which in turn has taught them to accept other kids who are different from themselves. You have changed the definition of disabled for us. Spina bifida doesn’t define you, it’s a part of you. Just another facet of the remarkable human being that you are. It has been a long three years, filled with therapy and doctor appointments and surgeries, but you did it, my angel baby. You did it.

Note: I tried multiple times to record a video of Liam walking, but he refused to walk while the camera was rolling. I’ll post a video as soon as he decides to cooperate!

***Update: I was finally able to get a video of Liam walking. He typically moves a bit faster and takes larger strides, but tends to get a little camera shy the second I hit Record. He has made even more progress, since taking his first steps back in September. When he first started walking, I had to hang on to the back of his RGO*, in order to help support him, and now he is able to rely completely on his walker to balance himself. He has also been standing between couches and taking small steps, without wearing his RGO. We are so proud of our Liam!
*Reciprocating Gait Orthosis -- the leg brace he wears that helps support him as he walks.
Click here for video of Liam walking!