Friday, May 26, 2006

When I had Alexis, I didn't realize that so many children were born with CHDs, and spent many years struggling by myself through the grief. When Nova was born, I was still pretty clueless about the sheer numbers of CHD families out there, but thought that there might be local support groups, so I went online to see if I could find any Yahoo Groups. I did, and joined one called Congenital Heart Defect Support. It offered a place to talk about Nova's condition, and the stress, and the worries, and the surgery, and the thousands of questions I had about it all. They're amazingly supportive, and more than willing to share their insight and knowledge in any way they can. I wasn't as active as I should have been, didn't post a lot, but there was a certain homey feel to the place that made you know that it was OK to just hang out and listen. They didn't demand that you be the talkative one. I'm usually the talkative one though, so it felt a little strange at first. Eventually I posted some comments and answers rather than just questions, and that was nice, to be able to be helpful, you know?

When Nova died, I posted to the group, and of course, as they always are, they were supportive and sympathetic. They're good people. I'm still a member there, but I say even less now, because I feel like by posting, I'm just throwing it in their face that death is a real possibility for every one of their children. I can only imagine that my presence would make them uncomfortable, and that's the last thing I want to do.

So after I lost Nova, I went in search of groups designed for families that had lost children from CHDs and related complications. I found two, and signed up for both. Grieving Hearts and Our Hearts. Our Hearts turned out to be based in Indiana, which I didn't realize, so I withdrew my request, and have been very active in Grieving Hearts. I can't even begin to explain how comforting it's been to talk with people who have the same experience under their belts, who have been through a lot of the same things, and had the same feelings and thoughts I did. Sometimes you have feelings and thoughts that really make you wonder if you haven't lost your mind, and like you are possibly the most alone person in the universe. Rationally, you know that's not true, but a lot of the grieving experience precludes rationality.

Last night I received an email invitation to the group that I'd withdrawn my membership request from, or rather, an offshoot of it, called Our Hearts Heaven. I was touched that I was invited in, I'm a long way from Indiana. I haven't had a chance to do much talking, I just posted my introduction, but the fact that I was invited despite the fact that I don't geographically 'belong' says a lot to me. It shouldn't come as such a surprise though, I have had the pleasure of getting to know so many heart families, and know that they're the most compassionate and deeply caring people. I read a quote once:
"The heart is the only broken instrument that works." ~T. E. Kalem
and the family that has formed in the name of CHD children proves it. Obviously, I'd have preferred to have seven healthy children, and I wish that Alexis and Nova were still with me, but I am so glad that I've been able to get to know so many wonderful people since Nova's birth, to have had them at my side through his life, and to still have them holding my hand since his death.

posted by Erin @ 12:19 PM   1 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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