Saturday, June 16, 2007

Sometimes things don't happen the way they're supposed to... but that isn't a fair statement I guess. Maybe they happen exactly like they're supposed to, we just don't understand why. I don't know.

All I know is that if he'd lived Nova would be 18 1/2 months old. He's been gone for 14 months, and I still don't understand any of it. Oh sure, I can give medical lectures on the ins and outs of CHD - spout statistics like I own them - but I still don't understand. I don't 'get' how kids with more serious defects come through with flying colors, and why he didn't. Why some people get the miracles, and we didn't. Twice. Why, after all this time, I still wake up thinking I heard him cry, or why I still wake up some mornings feeling like I just lost him, all over again.

I also, on a bigger scale, cannot comprehend the fact that so many children are born with CHDs and SO MANY of them die, and yet, there's so little known, so little research actively being done. I'm a member of a grief support board for parents who've lost babies to CHD and recently there was a petition passed around that someone posted... and none of us can even figure out if the statistics are correct... but it said that something like 50% of all children born with a CHD will die as a result of it. No one knew if that was accurate, no one seems to be able to find where that statistic came from, no one knows if that means they die before age 1, age 2, age 102...

And yet, no one much (except those of us whose lives have been changed by a CHD) want to talk about it. How do we raise awareness and funds for research when no one will listen? And trust me, people don't want to hear our stories. Dead babies tend to dampen the mood and make conversation shrivel right up. And I just want to shake people and say, "Don't you realize that YOUR CHILD might be born with a CHD!? This COULD HAPPEN TO YOU!!!" With statistics (and unknowns) like there are with CHD, no one wants to listen. No one wants to face the fact that their children are more likely to be born with a heart defect than any other birth defect. I guess it's just too ugly.

So I keep missing Alexis and Nova, and I keep talking and telling our stories. But many days I feel like I may as well beat my head against a brick wall. Fundraising for Team Nova this year is frighteningly slow. So much less support this year than last...


posted by Erin @ 4:16 PM   1 comments



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Name:
Donovan "Nova" LeClair
Location:

Monroe, North Carolina
Bio:
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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