Monday, October 15, 2012

Spina BIfida Awareness Day 16 - Keely's story

Dear Life,

The next adorable little girl to be featured is Keely.  I met her mommy Annie on a Facebook Spina Bifida support group.  She is very passionate about Awareness....she's awesome.  Meet Keely!

My daughter Keely is going to be four in just a few short


a little more than four years ago,  we found out 
that she was going to be born with spina bifida. I was about 22 weeks pregnant and my AFP test came back abnormally high. We were given a rushed appointment at the perinatologists office the next Monday for 
confirmation of the diagnosis, and then we were immediately asked when we wanted to abort. Talk about 
throwing us for a loop. We were devastated, angry and in denial at first. My pregnancy was a bit of a roller coaster. Overall I knew it would be okay but the unknown was very scary. Even now to this day there are so many 

unknowns but they're like that for all of us. Who really 
knows what the future holds?

A little back story... before Keely was conceived I had a

few miscarriages and around 12 weeks I started bleeding with Keely.  We rushed in and were told that there was a 50/50 chance we would lose our baby. I remember
praying and asking God for His will...and knowing 
that this baby was His. I wanted this baby so badly. 

At the doctors appointment we were told things like:"your baby will never have quality of life." "she will never be  independent, never walk, she will be brain damaged." 
We felt like we were told our child was going to have every negative thing that could happen. Once we heard the diagnosis Spina Bifida, I had an idea that the doctors could be wrong.  

 A second cousin in my family has Spina Bifida, and she's
amazing. I remember always being fascinated by her 
chair, her smile and her mom's amazing strength. 
(love you cousin!)... Listening to the doctors, you'd think 
Spina Bifida was a death sentence. Let me tell you ...they 
are so wrong. 

Today we have a beautiful, smart little girl. She walks, 
she talks and she lights up any room with her smile. So 
what if she chooses a wheelchair as an adult... so what if 
she does things a little differently or maybe stinks at math 
later. Who really cares? I know this kiddo will go far... she will be independent and she will be happy. That is what every  parent wants for their children.  When I look at her I don't see a miserable child. I see an active, happy girl.
Four years ago we were thrown into a scary world of 
catheterizing, latex precautions, enemas, shunts, 
surgeries, therapies etc... four years later and 15 surgeries 
and guess what we are here it wasn't the end of the world 
and I wouldn't change my daughter for a minute.

She has taught us how to stop and smell the roses. She's taught us
patience. She's taught us that doctors truly don't know it all. And most importantly, to find the true beauty in everything around us.

Yes, our life is a little different and sometimes crazy... but what is normal? 


            This journey has been worth every single second.

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