DAVID'S FIGHT (w/Trisomy 18): Trusting through Adversity

Sunday, February 20, 2011

Trusting through Adversity

I heard a young preacher today talk about how easy it is to trust during good times, but real trust comes in times when we have no control.

I feel like such a hypocrite raising my hands and saying "yes Lord, I trust you" then finding myself running to the internet to seek out doctors, blogs, and research to try to do what I can do to save David.

The harsh findings all pointing to answers I'm not yet willing to accept.

We got a treadmill today, and after 3 hours of putting that haus together, I went for a run.

I stared at the wall in front of me in silence. God heard my silence. Then I felt the Holy Spirit running next to me in his green adidas track jacket.

During lap 5 he tackled me, we wrestled on the ground for a bit, then I gave in. My tense body exhaled, I closed my eyes and felt at peace.

He winked at me and jogged away.

I got up, dusted myself off, and now I'm ready to run again.

Thank you Lord for this moment.
And thank you U.S. Presidents for that great sale on the treadmill.

Psalms 56:3

- Aaron's Journal Entry

1 comment:

UnknownFebruary 20, 2011 at 10:09 PM
I live in Gainesville. I am a mother of 8 children. I walked a similar road to yours just last year. Our daughter, Kara Faith, was diagnosed at Shands with Holoprosencephaly. So much to say! Please read her blog. Please contact us if we can help in any way. We will pray for you all. God is up to this task. Do not walk in fear. Enjoy EVERY day David has with you, even now.

http://www.sweetkarafaith.blogspot.com

Nancy Palmer
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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.