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.
- 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.
- 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.
- 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.
- 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.
- 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!
http://www.firstgiving.com/fundraiser/selina-gilliland/9th-annual-ghost-bowl-a-thon
