DAVID'S FIGHT (w/Trisomy 18): 2012

Friday, June 1, 2012

The First of Many

I can't believe it's been a year since that painfully beautiful day. There are no words to explain the emotions of being able to hold your child in your arms for the first time, then give him to heaven. No words.

Today is a celebration of the latter, and a mourning of the former. I cry selfishly, and selfishly I wait impatiently to be with him.

This morning I woke up to the sounds of tap dancing rain on the windows, just as it had that day at the hospital. These would be the first of many tears.

The second cry came, when I read Uncle Allen's post: "Dear David, One Year Later"
http://theycallmepercival.wordpress.com/2012/06/01/dear-david-one-year-later/

Tonight we will be taking our oldest to her year-end talent show. She shared that at rehearsal another child was singing David's song. It's going to be hard for her to concentrate on her own performance, and I have to be strong and send a comforting smile and a wink when she scans the crowd to see my face. Lord give me the strength.

Today is David Allen's Day, the first of many.

-Aaron

To view David Allen's Fight and other Trisomy 18 Stories visit
http://www.youtube.com/watch?v=a2_eHFoPVjY&feature=youtu.be

Friday, February 10, 2012

The Company Meeting

I was a late arrival, but instead of sneaking to the back, I kicked the door open (in my mind) walked in with my head held high and smiling ear to ear. There were whispers throughout the front rows. As I approached the center row, I noticed what the whispers were saying "what is it?!" "well" "what is it?!"

I held up that black and white sonogram image like it was a golden ticket to Willy Wonka's place. My wife let me hand pick it - the one that had an arrow with the word "boy!" beside it. "It's a boy!" I semi-whispered back. I was going to be the father of three boys and two girls!

http://www.davidandtrisomy18.blogspot.com/2011/02/first-sonogram.html

Today, I face walking back in to that same meeting. This time I'll probably go in early and sit down in the back. To say that life goes on would be a very real and true statement. Life does go on, but now as I anxiously await 3pm to roll around I can't help but to remember my entrance last year.

When we found out the diagnosis of David, I told God that I would go to the ends of the earth and walk through whatever he has ahead for me, but "Don't you dare back out on your promise to never leave me!"

So Father, just as you have escorted me through these times, consider this an open invitation to my company meeting today. Amen.

DEFINITION OF TRISOMY 18 (EDWARD'S SYNDROME)

Edwards Syndrome : Edwards Syndrome (Trisomy 18) is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where “the more the merrier” is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Sadly, this condition is considered "not compatible with life". Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed.