DAVID'S FIGHT (w/Trisomy 18): The Memory Montage

Friday, June 24, 2011

The Memory Montage

The next couple blogs are pages from my journal that I want to keep as a part of the journey to remember.

ROUGH DAY
Today I came home from work, crash landed in blankets and pillows and pushed play. This would mark the 27..hundredth time I watched his memorial video. At the end, I touched the triangle button again and a voice began to sing "It's like a storm..."

The memory montage plays in my head...
Heather: "We're Pregnant!...Again"
Doc: "Yep, He's all Boy."
"There's his hands..."
Me: "Trisomy 18? So what does this mean?"
Heather: "Feel Him, He's coming toward your voice..."

The part when he's suppose to cry...

Me: "He's so beautiful" "You're so perfect"
Thoughts: "Come on breathe, baby, breathe..."
His Bath.
Our Prayer.
Saying Goodbye.

"Thank you all for coming to honor our son..."

Then I hear the song begin to end - I look up at the video just as I did when I snuck away from everyone at his funeral, to watch it again. My goodness. He was "this close" Just 1 month, 4 days. ::knife blade::

Psalms 132:1 "¹ Lord, remember David
and all that he suffered."(NLT)

I just know I will fall asleep tonight with the comfort of Jeremiah 29:11 that's tattooed on my life.

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.