As the mother of a medically fragile child (The Boy has a weird and obscure liver condition) I become a big sloppy mess when I hear about other women on this challenging and treacherous path: It is an indiscribably daunting and overwhelming ride.
Being the Boy's mother has been an unfathomable blessing, disease and all. In fact, I have always viewed the weathering of the the many trials and tribulations surrounding his diagnosis as a great gift, in that --from the moment he was born-- I never had the option of taking him for granted, of getting complacent. Many parents will tell you that they cant imagine their life without their kid(s), but I had to look into that dark place, and find my way out of the abyss that swallowed me as a result. From the moment one stoic and unfeeling doctor told me "don't get attached to him", I have been faced with the possibility of him not being here. I have no doubt that the possibility does not hold a candle to the reality.
The amazing and profound Ms.Zilla turned me onto the story of Erin , a mama who has lost two children to heart defects, and rather than being crushed under the weight of that grief, Erin is taking to the streets to raise money and awareness. I am an organizer and fundraiser for good causes from way back, a dyed in the wool, card-carrying do-gooder. I would like to believe that, in her shoes, I would have the strength and courage to be the kind of example she is being, but I have my doubts. In any event, thanks to Erin we all have the opportunity to rise to the occasion and make a difference.
Erin writes "Heart defects are the #1 most common birth defect . . . In the vast majority of cases, the cause is unknown, there are no steps for prevention, and there is no cure. That is the current future of our children.
I want to do my part to change that future. My life has been, as most of you know, deeply impacted by this lack of awareness and research. In an effort to stop other parents from losing children, I've decided to participate in the Charlotte Metro Heart Walk 2006 on September 16th to support awareness and research of Congenital Heart Defects. I'm aiming to raise $2000 in donations. If you'd like to support my effort, you can donate online at:
[link has info for mailing donations as well as how to give online]
It isn't required by the AHA, but I'd really appreciate it if you'd put "In Memory of Nova LeClair" in the memo slot."
I know first hand what a difference funding for research can make, it has made a world of difference in combating so many diseases. Here, then, is an opportunity to have a powerful impact on the world, on the future, and on children's lives --without even getting out of you jammies. Don't miss it.