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One Very Special Angel
Dec 09, 2002

My name is Robin, I am married and have 2 children older than the baby we lost and 1 child younger than.
We were told in my 6th month of pregnancy that there was something terribly wrong with our baby, that last trimester was the longest and hardest 3 months of my life. Trying to be happy and excited with every kick, hiccup, and movement while the whole time knowing my baby was going to die. The doctors told us that we were lucky that I hadn't miscarried before then...That the baby probably wouldn't make it to term...That if he did make it to term he would be stillborn...If he wasn't stillborn he would only live a couple of hours...If he lived more than that it wouldn't be much more. We were told he had a very rare condition of which there was nothing they could do to make him better. We were told he had a Trisomic condition where he had an extra 1/2 of 2 different chromosomes. They weren't sure which 2 they were but it wasn't a promising situation and we should prepare ourselves for the worst (If that's possible). I had people I talked to actually telling me "don't get too close to the baby"...how do you NOT get close to the child growing inside you??
Well, he made it to term (delivering himself with the doctor on the way) crying and kicking. I was never so happy to hear a babies cry. He had many physical abnormalities which at that point I didn't see. All I saw was my beautiful, little, LIVE baby.
Within 6 hours he was in for the first of his many expected surgeries. Amongst his abnormalities he had a full upper cleft lip and pallet and needed a feeding tube inserted into his stomach. In conjunction with this surgery he was put on a respirator which they tried weaning him from several times, but ended up keeping him on it. He needed open heart surgery which they couldn't do until his temp went down. His temp wasn't going down because they didn't know what they were fighting, so they couldn't fix his little heart. It was 1 am on Feb. 12, 1995 when my husband and I decided to take him off the respirator and he died in my arms just minutes later. We returned to the hospital 6 weeks later to talk to the doctors and they at that point informed us that it wasn't his Trisomic condition which he died from, but the ecoli which he had "somehow developed". My son, Ryan Christopher Decker lived only 8 short days, he would be turning 8 this coming February. I know in my mind and in my heart that our decision to take him off the respirator was the best decision we could have made for him (if by some chance he had lived he would've been severely mentally and physically disabled)...but my heart also aches to this day. What makes this that much harder is that the doctors have informed us that this should not have happened. With the condition that our son had, it should have shown up in either myself or my husband and it's not there. There are less than a handfull of babies born in the whole United States every year with this disorder and it has baffled the doctors.
It has been a long, hard trip from then to now. Sometimes, it's put away in a safe place and everything is ok...then there are times when it feels like only yesterday. But we survive...knowing he wants us to go on. We have since had another child, which they said could've been the same. She is perfectly healthy and our very special little joy. She knows about and talks about her brother who watches over us, not completely understanding... (she's now 5)why mommy and daddy are so sad sometimes. Our older boys (now 13 & 15) hold their memories dear too.
With Ryan's birthday approaching, my heart aches a little more than usual. I will once again go through the few items we have of his, and we will light his candle (which burns for the 8 days of his life).
When I am asked...How many children do you have?...my answer is always 4, 3 with me and 1 very special angel up above.

Thank you for listening to me.

"Don't regret growing old, it's a privledge denied to many"
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