Recently Diagnosed with Spina Bifida? This is to you :)

Lately I've recieved quite a few emails from mothers who just recieved news that their little ones have Spina Bifida. It's made me realize that a lot of my blog posts are fairly negative. I usually only think to blog when I need to vent and I'm not always down about Spina Bifida and Noah's health issues. So this post is directly for those Mothers who find my blog and are looking for a little hope.

So here are some positive things about my child who happens to have Spina Bifida:

• He is beautiful. He does not look disabled or different. The only physical difference about him is that his legs don't move.
• Noah is healthy. Maybe not "healthy" in the sense that he doesn't have a severe birth defect- but overall he isn't always coming down with colds or ear infections. He was approved for the RSV vaccination (which is very hard to get and many sb children do not get approved) we turned it down AND he did get RSV and wasn't hospitalized and he fought it with a simple antibiotic. He wasn't expected to yet he did.
• His fine motor skills are coming along much quicker than other children his age. He can turn pages on a book, pick things up with two fingers and has a lot of control over his arms and hands.
• He is happy, ALWAYS. He has no idea he's had 5 surgeries, has a shunt in his head, can't feel his legs or anything. All he knows is that he likes toys, Mommy and Daddy and his puppy Toby. He likes laughing, cuddling and watching cartoons just like any other child.
• YOU GET USED TO IT. This is probably the most important thing. When you hold Noah his legs dangle. You learn to manuver him anyway. To swing his little legs around to set him in your lap. Sure, it's hard putting him in his jumper. His legs get caught up if you're not paying attention. But overall it just becomes a part of your life.
• Being a special needs parent is a challenge, no matter the disability. But with Spina Bifida you can really take it one step at a time.
• When your child is a newbon they can't walk anyway. Healthy or not. They rely on you to carry them. In a carseat nobody notices your child's legs aren't moving. Maybe you have a lazy baby in their eyes.  Not everyone moves their legs constantly. Once you accept your newborn's legs don't move, they become an infant. You get used to moving them around like I said above and then they hit 6 months. You're a pro by then. Once they hit a year you start thinking about braces, walkers and wheelchairs. I'm not there yet. Noah is only 6 months. But with this disability you can really ease into it. I'm very thankful for that.

There are so many more wonderful things about Noah that I can't even put into words. The way he looks at me. Reaches up for me when I go into his room after he's woken up from a nap. His little arms tightly around my neck. His smile. He is perfect. And if you're expecting a child with SB as well I PROMISE eveything will be ok. It's not your fault. You are strong enough. It's okay to cry. It's okay to feel weak sometimes. But your baby will pull through and embrace his or her differences and so will you.

Love,

Genevieve and Noah

xo