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!

Tuesday, April 14, 2015

A Rainy Recap...

It's raining here...a lot.  And its the kind of stir-crazy, can't-leave-the-house rain that causes one to do unexplainable scrub the shower tile, and update the blog for the first time in over a year.  Crazy.  I know.
I blame facebook...for all of it really.  Except the rain.  See the facebook memory button sent me a post I had written 4 years ago today, about a sweet little chunk, enjoying a picnic in her shiny, new walker.  I had to read it.  The picture of those pigtails sucked me had been so long.  Seems like a lifetime ago really. Seeing my girl working so hard for every step, and remembering a time when so much was uncertain...I could hear it in my own words.  Such pride at how far she had come, and an ever-so-cautious hope that the next year would be better.  And it was.  Every year that we go back is a reminder of how far she has come.  Last year I watched her climb the hill all by herself, and run down it, as fast as those little legs would take her...I probably didn't post it here, and I should have.  Not just for those people out there looking for answers and hoping the best for their little ones, but for me too.  I need to be reminded where we started sometimes, so I won't take it for granted where we are now.  We'll go to that picnic again this month, and I'll post it this time...swear.
As I said before, it's been over a year since I've blogged, and taking a quick look at all the links of my friends, I see I'm not alone in this.  Its both good and bad, I guess.  It means we've moved on.  Blogging is such a strange thing... It's a journal, really.   In it's most honest moments, it's a journal...of raw, rambling thoughts and pictures, that are made public for the world to see.  And they open their journals for you to see as well, and you feel like you know each other.  And in many ways you do.  I've had the pleasure of meeting so many incredible people, that I now call friends, through this thing called blogging.  And it used to be everything, but now there's facebook, twitter, and everything in between.  And everyone's there, posting updates, pictures, and all the things you used to only read in the blogs.  And it's great that everyone is so accessible now, but part of me misses this.  Does that mean I'll be back updating on a regular, not likely...if I'm being honest.  But kudos to those of you who are...I admire you for keeping up that journal, and I wish I hadn't left so many gaps in mine.  And speaking of gaps....I'm going to attempt to recap the last goes.

Maddie turned 5 in June.  It was a Princess Sofia party and my girl loved it!

A few days later we were in California for the National Spina Bifida conference at Disneyland. This was so much fun!!  We had lots of friends there with us, and we were fortunate to attend many sessions within the conference, and meet with specialists from all over the country. 
We all had a blast!

We got a dog!  Meet Sugar.
The kids went back to school in August...Mason started second grade and Maddie went to kindergarten!  Both of them have done amazingly well this year!
Mason turned 8 in October, and had a Ghostbusters party! 
I swear ya'll...he's into ghostbusters, star wars, and Atari...I love it.

Next came Halloween...We had so much fun with all our friends and family!!
Thanksgiving 2014
This year was really special because my sister-in-law came in from Kuwait, with my nieces and nephews, for an extra long visit.  My kiddos were so happy to spend the holidays with their cousins!

Christmas festivities
Teddy Bear Tea 2014
these two make me smile...
more holiday fun....
So really that was only six months worth, but I tried!  You get the idea...It was a great year!  We have so much to be thankful for, and I need that reminder from time to time.  So I'm going to make a conscious effort to post more take more pictures...and to remember the moments because they go entirely too fast.   Till next time...

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