Wednesday, October 14, 2015

Unanswered Questions

So it’s October again, which means pumpkin spice and all things fall.  It means cooler temperatures, and anticipation of holidays to come…It means football teams rocking the hot pink again.  These are all good things!  Several medical conditions are actually observed in the month of October, but one hits closer to home for me…

October is Spina Bifida Awareness Month.  And if you know my family, you probably know my little girl, Maddie.  She is 6 years old, and was born with Spina Bifida.   There are lots of things I could tell you about Maddie…the things that I think make her special, but those may not be the things you re wondering.   I find that as we get older, it becomes harder to communicate without fear of ignorance or offense.   I get it.  Children are so honest and innocent, and I envy that.  I love how they can easily ask Maddie why she wears braces, and she can just as easily answer…and they move on.  How simple.  It can be more complicated for us…So I thought I might try to simplify it for you. 


In honor of October being Spina Bifida Awareness month…Here are the questions you always wanted to ask me, but never did.


  1.  What is it?
Quite simply, Spina Bifida is an interruption in the development of the spine.  Maddie’s happened in the lower lumbar region near L4.  This means her spine was open in an area that should have been closed…think of a zipper that got off track and left an open area once it closed.  Everything below that opening is affected, and may not function properly.


  1. Why does she wear braces?
Once you know the answer to #1 you can understand the answer to #2.  Everything below the opening is affected, so, in Maddie’s case, everything below her knees is very weak, and her feet, ankles, and toes have very little movement.  The braces give support where her muscles just can’t. 


  1. Is it Permanent?
Yes.  There is no cure for Spina Bifida, and she will most likely always need bracing to walk…Having said that, Maddie gets around better than we ever expected, so we are incredibly grateful for those braces.  They make shoe shopping really awful, but my girl can run.  Nuff said.


  1.  Will it get worse?
No.  The areas that are affected will always be affected…no more, no less.  However, SB comes with a whole gang of issues that are not mobility-related, and these can always get complicated and pose extra health concerns.  Maddie has a shunt that keeps fluid from building around her brain.  Any time this acts up it gets serious real quick.  The other side of SB that nobody likes to talk about involves bowel/ bladder issues.  Basically, the muscles needed to help those function properly are not working, which can cause major issues for bladder, kidneys, and so on.  Catheterization and bowel programs have been helpful, but this area is the biggest challenge for us, and most families living with SB. 


  1.  Why does she have it?
This may be the hardest question to answer, because I honestly don’t know.   There is no known cause for Spina Bifida.  It affects about 1 in every 1500 pregnancies. Clearly, Mason is healthy, and I did nothing different for either pregnancy.  We do know that taking 400 mcg of folic acid can reduce the risk, and I encourage everyone to do so, but many of us were on prenatal vitamins, so there’s no guarantee.  And it’s such a touchy subject, because if there is anything at all any of us could have done differently to keep our kiddos healthy, we would have.  Trust that.  It’s a random thing, and Maddie is my 1 in 1500. 


So that’s it…Those are the questions I get asked the most, and the least.  I hope this helps, and I hope that, in the future, you feel more comfortable asking me questions.  I'm an open book.  If I could leave you with one thing remember this: Spina Bifida is a permanently disabling condition that affects every aspect of our lives, BUT it does not define my family, or Maddie.  We’ve learned to live with it, and factor it into our daily routines.   Beyond the month of October, you won’t hear much about SB from me.  It’s a conscious decision that I’ve made to keep our lives as normal as possible.  I want people to see beyond the braces, and see Maddie for who she is, and all the incredible gifts that she has to offer…and more importantly, I want her to see herself the same way. She is an amazing, smart, funny, completely capable little person…who doesn’t just get by, she thrives. 
Please consider sponsoring Maddie for the Spina Bifida of Greater New Orleans
bowl a thon...Thanks!

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