Our double blessings: Spina Bifida

Did you know Spina Bifida is THE most common disabling birth defect affecting over 1,000 children born every year? I certainly didn't. When we learned our son would be born with Spina Bifida we had no idea what that meant. We imagined terrible things. We were encouraged to terminate our pregnancy, that our child would have a poor quality of life. We were terrified of what the future would hold for our little boy and for us. We have since learned that this is too often the case of pregnant parents learning about Spina Bifida for the first time. There is simply not enough awareness. Click on this link: What is Spina Bifida? for more information.

Here is also a GREAT place for information and support for expectant parents, newly diagnosed and their families who want to learn more.

When I was still pregnant and after we learned the news about Spina Bifida, I googled like crazy to try to learn more. I fully believe that God puts people in your life exactly when you need them so I don't think it was a coincidence that I quickly found a whole community of parents that were pregnant or raising children with Spina Bifida. In a place in my life where I felt very scared and very alone, I soon felt like I was right at "home" surrounded by their support. They are my amazing on line family. I talk about them often with my "real" family ha,ha. We love watching all of our other little ones grow and accomplish so much!!!!

Even though we've never met, this collection of incredible people affect me in a huge way, and have given me a wealth of support and guidance. Our common link is that we all love someone with spina bifida (mostly we are parents but we've had other family and friends visit us as well). We found each other on Babycenter.com and its been a HUGE support for me (and hubby) as we navigate this road. Its amazing how much I depend on the support of others I will likely never meet in person or how connected I feel to their children as I watch them grow and thrive through blogs, emails and pictures. I have fallen in love with their smiles and am inspired by their determination. I feel so lucky to be able to follow their accomplishments and cheer them on as if they were in my own family. It certainly feels like they are and I love that.

October is Spina Bifida awareness month.

Many of us parents have been fortunate enough to find each other on line after learning there was something "wrong" with our babies. We desperately search out more information and we have been blessed to find each other. But more and more lately we are learning of people who didn't find us first, who only heard outdated or false information about children born with Spina Bifida and they make life altering decisions based on this.

I hear these stories over and over and its heart wrenching. What if I didn't have my faith? What if I believed all of those "predictions" told to me by all the professionals with "MD" after their names? Would I have "spared" my son, and the world of him? I can't imagine a world without him in it!

I wish my voice was louder, to scream from the roof-tops so any parent hearing those first words wouldn't feel so alone. They would instead maybe think "okay, I've heard of Spina Bifida, I've seen pictures, heard stories of incredible people living very full lives and I think we can do this". or at the very least, "lets get more information."

Collectively us as parents, grandparents, aunts, uncles, friends, we can DO something to spread awareness, educate. I will use what resources I have to these means. blogging, facebook, conversations at playgrounds, doctors offices. I ask that any one reading please do the same.

Another incredible mother summed it up so well:

"Spina Bifida shouldn't be something scary, sad, foreign, or feared as one would fear a death sentence. And yet every parent who is hears "I'm so sorry -there is something wrong - your baby has Spina Bifida" feels those things. Every pregnant mother who is left with the decision on whether or not to terminate her pregnancy based on a horrifying description of the "poor quality of life" their child will have - feels those things. And it's not only because we are overwhelmed with a diagnosis we didn't expect - it's because we are UNAWARE. We are uneducated, unprepared, unaware of what Spina Bifida really is. What it looks like. What it means for our children. What it means for our futures. We overlook what it CAN be because of what we FEAR it to be. Don't let Spina Bifida continue to be like a ghost in the shadows - shine the light on Spina Bifida. Be aware of the research surrounding it, the miracles born with it, the people who live with it, and the many who strive to REDEFINE it." -Joanna Penny

Alex is being featured in several blogs and articles. Check him out as well as some other very inspiring people!!!

http://simplysoares.blogspot.com/2011/10/spina-bifida-awareness-meet-alex.html

Coming soon, (with their permission) I will post pictures and links to these inspiring families who bring me hope, laughter and love every single day! Together we are re-defining what Spina Bifida looks like!!!

To my SB mamas (and dads), if I've forgotten you or you want your little one featured here, please send me a note and photo to my email: hrissberger@gmail.com
thanks!!!!

Here is a sample of our amazing friends. You can click on many of their names and see their story.

Now....