Friday, October 3, 2014

Filling up your newsfeed

Ive thought about what to write around this time. I've even sat down a few times to write and it just doesnt come.

None of it seemed enough.

Spina Bifida Awareness is important. Its super crazy important.  When we heard the words 'spina bifida' we had no idea what it was or what it meant. We had no idea what our future looked like. We had no idea of anything. We just knew it was bad, very very bad.

We sat in an office hearing words that sounded like a foriegn language. Hydrocephalus. spina bifida myelomeningocele neurogenic bladder.  What the what?!

We were young. We had a 8 month old (im guessing, im too tired to do the math) and we had no idea what what going on.

It was like this Hurricane diagnosis had just swept into our life and screwed it all up with a bunch of words that had no meaning.

We are 8 1/2 years out from those horrible hard first days.

In that time Ive talked to a few moms that were pregnant with their babies. Sitting right where I was sitting. Scared out of their mind and having no idea of anything except that it was bad, very very bad.

Ive gotten emails and phone calls. Ive had the opportunity to share how much worth Toby has and beg them to see the same for their child.  I've answered hard questions. Ive said hard things. Ive fought for these babies and fought for their mommies to see what we can see now. How worth it it is. Some mommies I've heard the end of the story, I've seen their babies born through pictures. I've watched their babies grow to toddlers through pictures.  And other times I've never heard back. I never got a return phone call, a facebook friend invite, an email to let me know all is well.  At that point I can only imagine what the end result was.

Spina Bifida awareness itsnt about finding the cure. Its not about folic acid and taking prenatals. Spina Bifida Awareness month is about sharing the worth.

Its worth it.  

We mommies with our babies with Spina Bifida. We mommies with our toddlers with Spina Bifida. We mommies with our kids and teens with Spina Bifida. And I think we can venture to say that the adults with Spina Bifida feel the same way.

For us Spina Bifida Awareness month is about letting the world see, We are okay. Its okay. The kids are okay. Its about sharing the journey. Seeing the joy. Its about one less abortion. Its about one more birth. Its about the worth.  They are worth it all. It is worth it all. Every fight, every tear, every pain.  Because we also get lots of joys, triumphs and greatness.

So maybe You think we are all a little crazy. Maybe we annoy you with filling up your newsfeed.  Maybe you think awareness is no big deal.
Id like to see you try to explain that to me 8 1/2 years ago.
But man if in that room 8 1/2 year ago I could have remember a video, a blog post, a picture and been able to attach it to the word Spina Bifida. Maybe that video, blog post or picture would have helped replace some of that fear. Maybe that video, blog post or picture would make me realize that it was gonna be okay and that itd be worth it.
Maybe it would have been easier to say, hey, its going to be okay.
It will be worth it.
because it totally is. 

So on I will blog, On I will post and On I will share. 

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