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Saturday, April 30, 2011

15.32

To most people it is just a number.  It is three $5.00 bills, three dimes, and two pennies.  It is eight months and twenty-eight days before a 16th birthday party.  It is the price of two value meals and one happy meal at McDonalds.  To me, it was a number that shattered my world and broke my heart ~ several times.

15.32 is the deletion size of Alexander's 4th Chromosome.  A full 4th chromosome has genetic material that ranges from 4q35.2 - 4p16.3. 

The short arm (P) is where deletions that lead to Wolf Hirschhorn Syndrome appear.  WHS occurs at 4p16.3 or more. The small red arrow is the deletion that must exist to label a child with Wolf Hirschhorn Syndrome.  The large red arrow is where Alexander's deletion occurs. 
And he is missing all the genetic material from that arrow to the end. Everything. On Every gene. On every cell. In every part of his body.


So what? What does this mean?  What's in a deletion size?  There are many people who believe that deletion size makes no difference in development.  Up until a year ago, even the research supported this notion.  But, as science evolves and research is conducted, more and more people (including the experts) now believe that deletion size does matter.  I remember when the deletion size was all I the hope I had left to hold on to.  As discussed before, we were told Alexander's prognosis was bleak.  Even as they ran his genetic profile, there was a period of waiting.  They rush tested the 4th chromosome to see if there was a deletion, but there was a longer wait to see how big that deletion was.  I remember.... each of those periods where we held hands and prayed.  Prayed.... "Please God. Don't let the deletion exist."  It did. "Please God. Make it a small deletion... Please." It wasn't.  I remember once, my Dad looking at Alexander.  I knew what he was thinking, because I had thought it a million times over.  He finally said, "His mouth... there are lots of people who don't smile very often.  If you could just...." I knew what he was saying.  You just wanted to tug at the corners of that cute mouth and tug it strait.  How could a downturned mouth mean so many things?  I just wanted to will it to happen.  But I couldn't.
No matter how hard I tried, I could not give Alexander back the genetic material he was missing.
15.32 - The reason Alexander was given a G-tube without being given a chance to learn to eat.
15.32 - The reason he was sent home with a heart monitor even though he has never had a "D-sat"
15.32 - The reason we were taught CPR before we were able to leave the hospital with him.
15.32 - The reason we were advised not to correct his cataract which made his eye blind.
15.32 - The reason the Neurologist, Cardiologist, Opthamologist, Gastrointestinalogist,  - every doctor was told to "make comfortable, but not to treat." As if we were in Hospice care.
15.32 - The reason an actual NICU Doctor held my hand and told me to ignore Alexander's monitor and allow him to die peacefully.
15.32 ..... The number that changed my life.
Now let me explain 15.32.  That number is not the end.  If you calculate all the other factors into it.... well - just follow along:


  15.32
16.3    (The official Wolf Hirschhorn deletion)
    31.62
-      .98  (The difference between the WHS deletion and Alexander's deletion)
    30.64
x         5  (The size of our family) 
    153.2  (Still following?)
ΒΈ         2   (Ray and I .... the Kids are important. They will need to hold each other together)
       76.6
-     30.0  (The number of medical professionals who told us to give up on Alexander)
       46.6
x        10  (The number of excellent doctors we now consult for Alexander's care)
        466  (Almost done!)
-       365  (The number of blessed days we've had with a family of 5 this past year.)
         101
-            1 (A miracle. His first birthday.... just around the corner.)
         100  Alexander is 100% who he was supposed to be.  100% created in God's image.  100% Beloved


15.32 does not change anything. It is a number. Just a number.
Why would you give up on a baby only 10 days old based on a number? 

There are many people out there who can talk at length about how life with a child with disabilities has effected them.  I could tell you how it has changed our life.  And it has.  Our life now has different priorities.  Our life has specialists and hospitals and therapists...  things we didn't really have before.  But our life has this unbelievable gift.  Of a sweet baby who just smiles - and melts your heart.  My most painful experience in this world of disabilities came so early.  When people chose to make my SON a number. My son is not 15.32.... he is 100.  I choose to look at him and see 100% potential.  His life is not written.  His fate has not been revealed to us. He has a long life of lessons, joys, triumphs, and sorrows - just like all of us do.

 For those of you who don't know -
Alexander does not use the heart monitor anymore (we gave it back last summer.)
Alexander's eye has been repaired, and he watches everything.
Alexander eats solid food. (tonight he tried 2 bites of deep fried onions and this morning he had some pancakes... he also eats baby food)
Alexander is gaining weight - abet slowly
Alexander smiles, coos, grasps toys, passes toys from one hand to another, grasps his feet, rolls over, sits with assistance, and stands in a stander.  I'm waiting until he eats that happy meal from McDonald's to go back to the NICU to show those medical professionals that a number doesn't define anyone. 

If you look at the world as half empty, you will never want to drink from that cup.  Our glass overflows... with support and blessings.
I am a Fireman. I am a superhero. I am a brother. I am a son.
I am not a number.

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7 Comments:

At April 30, 2011 at 10:46 PM , Blogger Kisses4Kaylee said...

Simply Beautiful!! xo

 
At May 1, 2011 at 8:22 AM , OpenID joanna said...

So Beautiful!

 
At May 1, 2011 at 3:04 PM , Blogger Lisa said...

Amen sister!! WOW that was perfectly awesome!!

 
At May 1, 2011 at 4:53 PM , Blogger Tammy said...

What a beautiful post!

 
At May 3, 2011 at 3:48 PM , Blogger Hilary said...

I LOVE this post! It made me cry. You are an incredible writer. Thank you so much for allowing me to follow your journey.

 
At May 4, 2011 at 11:55 PM , Blogger Laura said...

LOVE this! And I love you and your perfect 100 son :o) Your math is amazing....

 
At May 29, 2011 at 10:30 PM , Anonymous Alissa said...

Just found your blog (via WW4F) and clicked on this post. I just wiped tears from my eyes after reading your heartfelt words about your son. Thanks for sharing him with us!

 

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