I often feel like an uneducated idiot when asked about Spina Bifida, what it means for my daughter.
You see, Spina Bifida isn’t ‘cut and dry’ like other defects, diseases, or what have you. It isn’t as simple as “this means she will need a kidney transplant by age 4” or “She will never see out of her right eye, because there isn’t one in the socket” No, it is not nearly so straight forward as that.
My daughter has a lower level lesion…it is in the lower L or sacral region. That means, any and everything from that point and below, could have been damaged in ANY capacity. Another child could have the same level lesion, yet one could have complete bladder control, and the other can’t feel a thing, constantly leaking. One may have full use of both legs, the other may not be able to control their left with any accuracy at all. One may be able to walk independently, the other may need braces and/or a walker.
There’s a lot of wait and see involved with a Spina Bifida diagnosis. We wait to see if they can move their toes at will, their legs. We wait to see if they will be able to sit and crawl, pull to a stand and take a step. We wait to see if they can control their bladder and bowel, if they can hold it, if they can release at will.
So someone asks me, what does Spina Bifida mean for her future..and I cannot really answer them. Not because I know nothing about my daughter’s condition, but rather because I know more and more about it all the time and that tells me more and more, nothing is certain. Nothing is written in stone. Nothing can be fully determined. We are all along for the ride.
I’ve heard of others who were told their child would never be able to walk, and now they are running and playing on sports teams. Even their doctors were along for this ride of uncertainty.
Others who were told their child would have no movement in their feet, surprise them all by moving the foot and pulling to a stand.
I guess one thing we can say with certainty, is you can never tell a Spina Bifida child they ‘cannot’ or ‘will never’ do something, because they WILL prove you wrong.
They cannot be put into a box. Not with their diagnosis, not with their lives and abilities. Every single one of them is different. Every single one of them is strong.
And their parents.
I look around and see the parents of other children with this diagnosis, and I see immense strength, courage, and determination. Parents who chose life and to love. And have ended up being the ones with their socks blessed off and standing in awe and wonder of these determined kids. Who in turn give the parents more strength to keep doing what they’re doing. To withstand the therapy appointments, the doctor’s visits, the surgeries, the sleepless nights of worry and fret, the depressive feelings of failure.
We may not know what ‘the future’ holds for our children, but we are learning every day how to better help them. We are learning more about ourselves and our children, each day.
Surely I am not the only parent out there that feels this way. Please do not think I’m uneducated or not asking questions and getting answers about my daughter’s condition simply because I cannot answer your questions. There just aren’t answers to everything right now.
This is part of why awareness is so important. Others need to understand this uncertainty, this broad spectrum kind of diagnosis. Spina Bifida. It sounds like a clear diagnosis with specifics, but it really isn’t that simple. So join us, the parents, in learning about this birth defect and spreading the word.