Tuesday, April 25, 2006

I never was one to like labels.

When I first found online support groups for parents of children with (and adults who have) Congenital Heart Defects, one of the first things I noticed was that most parents have created a signature that includes their child's particular list of defects, complications, surgeries etc.
~Erin,
Mom to
Nova - PA w/Collaterals & VSD
Alexis - Angel Baby 8/17/01 - 8/29/01 died following OHS for ToF
and Tommy, Kory, Kassi, Brendon, and Terra - all HH
I never really used a signature like this, but if I had it would now have "Angel Baby" beside Nova's name, and his birth and death dates as well. They are like badges for the parents whose children survive, and sort of like those name tags you wear to your High School reunion, so you can identify the people who will "get" your concerns and issues the most readily. The ones with similar tags to your own will comprehend the names of the procedures your child will (or did already) experience. You know that they'll understand the alphabet that identifies your baby's problems, and all the medical jargon that comes along with it.

My alphabet doesn't seem to fit in there anymore - all those HLHS/HRHS's and ToF's and TGA's once seemed like a foreign language. I'd have to look up the abbreviation and study up on how similar or different it was from Nova's heart. Now I understand so much more of it than I ever wanted to. But RIP is a whole other language, one I speak fluently, but still can't really communicate.

What I can say, with absolute certainty, is that I don't want to wear around a tag that says "~Erin, Mom to 2 angel babies." It's a particularly heavy badge to carry around.


posted by Erin @ 8:44 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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