DAVID'S FIGHT (w/Trisomy 18): Healing and Joy

Sunday, June 26, 2011

Healing and Joy

It's 4:30am, the newspaper article just came out.
I'm reliving each memory, the sights and sounds of David's birth. I'm trying to experience Joy, but the pain is deep.

I then read "You will grieve, but your grief will suddenly turn to wonderful joy." John 16:20 (NLT)

And I realize how blessed I am - just to have been his Dad. This is all fresh in my mind, because I got to celebrate Father's Day today. My kids gathered around me at the table. I opened my homemade card and unwrapped my new wallet with little photobooth pictures hidden inside.

This was epic. Then it hit me. I just want to be a great Dad.

No matter how long my "dash" is (1980-20XX) I want my kids to remember me by the unconditional love I give to them. This is a tall order, but I am up for the challenge.

I started processing through how I can make a memory vault to showcase all of our great memories. I thought of how much this blog has helped me. So, I created a little site for my kids to go watch, read, and see not just "the good times with dear ole Dad", but to hopefully see growth in their Father as an individual, and as a Christ Follower.

Here's to you hard-working Dads everywhere, Happy Belated Father's Day.

http://epiclifeofadad.wordpress.com/

Epic Life of a Dad

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.