Tuesday, October 14, 2014

I knew someone once with spina bifida and they walked great...

Spina Bifida is confusing. Its hard to grasp on to and understand. 
I know lots of us have heard, "I had a friends cousins uncles best friend who had spina bifida and he walked great and you'd never know."

And then...
you can see stuff like this and think, okay I think I got it. I have broke the code... 

and then.......

But then you see a kid walking without crutches at the same level as a kid thats a full time wheelchair user.

Why is this?  What's the deal?

There are kids who had fetal surgery. There are kids who didnt. There are kids who have had tethered cord surgery, there are kids who are waiting it out. There are kids who have shunt surgery after shunt surgery and then their are teens with the same shunt they had since they were tiny.  

We shout awareness and we play videos but then I think it gets a little hazy.  One kids dancing and jumping, another kids spinning in a chair, and another kid is running with crutches and we are trying to tell everyone they have the same thing!!?   

Well people, that's spina bifida. It doesnt pull punches. It cant be contained in a paragraph in your medical book. It likes to confuse and scare. As soon as you think youve got it figured out it laughs and pulls another crazy turn. 

But then I think it makes it hard for us mamas.  I dont know about you but every time I see a kid that is dong more than Toby that is his level I can doubt myself. Did we do enough therapy, did I push enough, did we mess something up. Why isnt he doing so well? We are happy for them to a degree but then we second guess. Because Spina Bifida is a guessing game half the time. We get offended by people posting about the joys of walking even though they have SB.  (because we know how much happiness we see when our kid zooms by in his wheelchair.) But then in the back of our mind. We wondered if we missed something. We worry we are to blame.And if we dont worry we are to blame we worry if others THINK we are to blame. A lot of the decisions surrounding spina bifida rest on our shoulders. How much therapy, how much pushing, this elective surgery, that elective surgery. Is it tethered cord, is it not tethered cord. Did we make the wrong choice? Did we jump the gun? Did we not move fast enough?

Remember how we all wish we could go back and talk to our pregnant selves and tell ourselves it will be okay.  
I wish mommy of teenager Toby could come to me now and say, "hey dont worry about XYZ, thats not a big deal."  "hey dont blame yourself for that one."  "Hey you did the very best you could and knew how."  "Hey ya know that therapy just wasnt a big deal go let him play more."  "Or hey that right there, that is a big deal, put down the video game and go work him hard on that." 

But we cant. And so the doubt and the mess is there......And here is the only clear part that I've come up with.

It doesnt matter what others are doing. It doesnt matter the level. There is too much that comes into play with Spina Bifida. I couldnt figure it out if I wanted to.

But what I do know is that I want to be able to look at teenage Toby, I want to look him in the eye and say and know it to be true.....

We did our very best. We tried our very hardest. And we always did whatever we could no matter what. 

because thats what really matters....doing our best....... For Him.    

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