Spina Bifida Awareness Day 8 -Katie's Story

Dear Life,

My next feature is a sweet little girl that I adore.  I met her adorable mom a couple of years ago after hearing about her blog.  I stalked her until she became my friend.  I really look up to her, Sarah works so hard to make sure Katie does everything...even when it's hard.  She makes it look easy...even when it's not.  Katie is such a sweet, adorable little girl.  Kumaka loves her.  This family has been incredibly supportive of our journey...and Sarah has been so supportive as me as a mother...and as a woman.  I am blessed to have this family in my life. 

 

"Katie is nine years old.  

My husband and I wanted to celebrate our Valentines day 

at our 20 week ultrasound finding out if we were having a 

boy or a girl.  We had plans to have dinner afterwards to 

celebrate the news that our first born would be a daughter! 

We started to notice the tech taking a long time on the 

ultrasound, was acting strange, and not answering any

of my questions.  It left us unsettled, but made sense when

I got a phone call the next day from our OB asking us to 

come in for further testing.  When we finally got another 

appointment, we heard all sorts of things; ranging from 

Down Syndrome to our baby might die at birth.  Finally we

had the level 2 ultrasound and the radiologist told us our 

baby would be born with Spina Bifida.  It was almost a 

relief after all the things they had told us originally.

Almost.  I felt emotions from extreme lows (feeling like I 

was just kicked in the stomach) to the most overwhelming 

feelings of peace and comfort.  However, at one point 

during the appointment, I asked to be excused and went 

into the restroom where I just stood there alone, trying

to take it all in.  I had to take a moment and get in control

of the situation because the doctors were pressuring me to 

get an amniocentesis and they wanted us to fly to 

Sacramento for a new study/surgery; not to mention the 

fact that they uttered the dreaded "A" word.  I needed to 

gather my thoughts and say a prayer and let the Lord 

guide me.  

First off, I knew I was going to keep my baby, no

matter what so I shot that "A" word option down real fast.  

Second, I was going to do the amnio because I felt 

pressure to, but after talking it over with Bryant, we both 

felt like there was no need to do that, so we declined that 

test as well.  

Then the 

Sacramento option

 just did not feel

right at all.  So we

 went with how we

 were feeling and 

passed on that too. 

 When we got home

 on that rainy day,

we sat in our 

apartment and just took it in and did a 

paradigm shift...this would be our new life.  We would be 

parents to a special needs baby.

Looking back now, I

always say I wish I

could have just seen a 

quick snapshot of 

our life today!  I 

would have enjoyed 

my pregnancy more 

and would have 

welcomed this new 

life with open arms and pushed those fears away.

How do you put into 

words this challenging, 

beautiful, hard,   

miraculous, tearful, 

joyful, amazing 

experience?

The one thing that I never

thought I would see Katie enjoy 

is the beach.  

That is what got me 

the most.  How 

would we do the 

beach?  Well, we do 

it, and we do it well.

This past summer, 

we went to the beach

almost daily!  We 

learned to adapt and

that is how we do 

lots of fun things...

the adaptive way!

Recently I have seen 

my daughter ski,

race in a 5K, play 

wheelchair 

basketball, 

be on a TV show,

surf with Life Rolls 

On, win Miss 

Wheelchair of 

California,

get perfect scores on 

tests at school, and I have seen her smile and laugh EVERY 

SINGLE DAY...and that above all is the most important 

thing.  She is happy and that is all I could have ever asked 

or prayed for.  She is happy. 

What I want to say to future parents: 

Welcome to this beautiful life.  A life not all

get to experience.  A life where patience is

tested but where miracles are witnessed and 

strength is gained.  Welcome!"