Tuesday, June 19, 2007

Last year after Nova died, someone told me about the CHD Awareness Quilt(s). These are quilts (40+) that are comprised of seperate blocks, each designed for a CHD child, living or passed. Of course as soon as I heard of it, I requested blocks for both Nova and Alexis. In October, I received a picture of Nova's block. As you can see (if you click) they customize each block for the child it's meant to honor. I requested stars for Nova's, for obvious reasons - and the block is just beautiful.

Today, I received Alexis' block. Again. it's customized just for her. Alexis was 12 days old when she died, and at her funeral, we placed 12 pink roses on her casket... 1 for each day she lived. So her block has pink roses on it.

Nova's block has been waiting for 8 months to be added to a quilt - waiting for Alexis' block to be finished so that they can be put into the same quilt. Now that hers is done, they can be incorporated into a quilt...

I can't wait until they are. The quilts are often displayed at CHD awarenes/fund raiser events around the country, and I'm hoping that we will, someday, be able to see our babies together.

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posted by Erin @ 3:43 PM   2 comments

Saturday, June 16, 2007

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Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sunlight on ripened grain,
I am the gentle autumn's rain.
When you awaken in the morning's hush,
I am the swift uplifting rush,
Of quiet birds in circled flight
I am the soft stars that shine at night.
Do not stand at my grave and cry,
I am not there, I did not die.

Robert Hepburn

So it's a little cheesy, and it rhymes, but I like it.

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posted by Erin @ 5:53 PM   0 comments

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

Friday, June 15, 2007

It's time for Heart Walk 2007!

In less than a month, we will be commemorating the one year anniversary of Nova's death, and so it's time to kick off our efforts for this year's Walk.

Once again, we're working with the American Heart Association to raise funds and Awareness in the battle against Congenital Heart Defects. If you're receiving this email from me, most likely, you know our story, and how we've lost 2 of our children in 5 years to the effects of Congenital Heart Defects.

Nearly 40,000 babies have been born with CHD since you last heard from me about last year's Heart Walk, and nearly 4000 have died as a result. We want to honor Alexis' and Nova's memories by doing our part in helping future parents avoid experiencing the devastating loss of a child.

Please help us battle the #1 birth defect, and the leading cause of defect-related infant death by making a donation of $25, $50 or more.

Thank you so much for your support!

Erin and Scott
(in loving memory of Alexis and Nova LeClair)

Follow This Link to visit my personal web page and help me in my efforts to support American Heart Association - Charlotte, NC

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posted by Erin @ 1:19 AM   3 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
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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