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Friday, July 29, 2011


A few weeks ago, I ordered our Redefining Spina Bifida shirts.  I have a photo I am planning where I want us all to wear them, but I did not want to spend the money on them right now.  I saw a sale on second quality shirts, and nabbed them up.  Heck, we'll stain them anyway, so who cares if they are second quality!

I was so excited when I got our shirts, but was a little taken back when I read the back.  I had read it before I bought it, but it didn't really resonate with me until I saw it on my little gal.

Fear.  Right in the middle of everything I feel about my amazing daughter and spina bifida is the word "fear".  Fear. 

It really made me pause and think.  Am I afraid of spina bifida?  Is Madi?  Is our family?  The answer, simply, is no.  We are not afraid of spina bifida. 

Now, when I first heard that Madi had spina bifida, I was afraid.  I was afraid because no one could tell me what life would look like.  I was afraid because I did not know if I would be able to hold my little girl in my arms.  I was afraid because no one could tell me what Madi would face.  There were lots of guesses, but the fact was, no one knew.  I hear the fear in the posts and questions of new parents.  Terms like "mentally retarded", "no quality of life", and "brain dead" get thrown around, and yeah, it sounds scary!  Doctors tell parents the only human thing to do is to terminate the pregnancy.  They tell them spina bifida is incompatable with life.  It saddens me to no end that doctors STILL describe our children and their lives that way, and it could not be further from the truth!  Madi is not your "best case" of spina bifida.  She has a fairly high lesion, needs a shunt, had a clubbed foot, and cannot move from the waist down.   But guess what, to us, she IS the best case.  She is just perfectly perfect and we are so thankful for the opportunity to get to see and be part of her greatness every day

The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.
-H. P. Lovecraft

Seeing Madi and the astounding little blessing that she is, there is just no way I can fear spina bifida.  She is not her spina bifida.  It does not define her.  It does not rule, nor ruin, our lives.  I truly do not think Madi is afraid of spina bifida either.  I see her looking spina bifida in the face and saying, "Hey, get out of my way!  You don't stop me!"  Sure, sometimes it annoys her (or 'bannoys' as Conner would say ;)), but she is a bright and determined little girl, and she finds a way. 


I am not afraid of tomorrow, for I have seen yesterday and I love today.
-William Allen White

So take that spina bifida, we are not afraid of you!

P. S. My friend said that "fear" is smaller on the shirt because we are overcoming it.  That is exactly my prayer.  I hope that by wearing our shirts, keeping up our blogs, and being open with the rest of the world, those of us that are touched by spina bifida can reduce fear for new parents.  We can reduce that fear of the unknown.  Now if we can just figure out a way to work on those darn doctors and get them to be more fair in how they describe our kiddos.....

P.S.S. You can buy the shirt here  It is a great shirt!


Andy and Kiara said...

What a beautiful post!

Sarah said...

I say you get out a big fat permanent marker and put a nice bold line right through that word!


Meilani said...

Jamie -
I love this post. You are so great. I totally agree with you.

This is the first time I am realizing that Madi's situation is similar to Lily's. I have never met another child with Lily's same amount of paralysis (and I meet as many people with SB as I can). Lily's lesion started at T12/L1. She has only recently started shaking her hips and moving her bum. Anyway, I am happy to know that Madi is similar. I was showing my therapist Madi's bracing a while back and he suggested we start working with Shriners to get her big braces. Are they a pain? Do you feel like it has been worth doing at such a young age?

One more question, where did you buy your shirts? I thought that they weren't for sale anymore.

Here's my email if you want to send me a message. I would appreciate it. Thank you!

Unknown said...

you are such a strong family!

Vickie said...

The shirt is awesome. I'd also like to know where you bought it. God bless.

Jamie said...

Here you go :)