Tuesday, August 08, 2006

Long Rambling Randomness

Tonight I rediscovered Rosie. As in Rosie O'donnell - I love her, her blog is amazing, she is amazing. I hadn't read in a long while, something about finding out about Nova's heart made me forget the superfluous things like celebrity worship (I'm only partially kidding there haha.) I wish I had half the guts, but, well, I don't.

Anyway, she writes poetry (my first true love) she loves her kids, she wants peace in the Middle East (politics be damned - GO Rosie!) aaaaand, msot importantly, she's coming back to daytime television, which means Terra will have to part with her children's shows for an hour during the day, not that she watches TV anymore. She's growing up so much... proud-making, and sad-making too. Everything she does is a reminder of the things that Nova will never do, and a reminder of all the things I can no longer imagine Alexis doing. And it makes me sad in that way, and in that I should be enjoying every wonderful thing she's doing, but instead I just cry.

I should post more about the rest of the family here, and not just on my main blog.

Anyway, I only mention Rosie's blog because she has a feature called "Ask Ro" where readers can ask her a question, and if the planets align just right she will answer. (She answers a lot, but undoubtedly only a tiny fraction of the questions sent in.) So I asked Ro. I asked something that requires no written response. I asked her to discuss congenital heart defects on national television when she gets on The View next month. I sincerely hope she does. I think if anyone will, maybe she will, she loves kids. But then again, there are writers and producers and who knows how much control she has over what she discusses on The View. What do I know, I'm just a buck-toothed knobby-kneed southern girl with bad teeth and an accent as thick as Carolina air in August.

So, maybe she'll talk about it. And I subscribed to her RSS feed, you know, just in case.

In other news, so far there are no hits from the AHA Media Dept.'s backgrounder (yet.) And the newspaper reporter has some other stories she's working on, and, bless her heart, she's going to read every entry I've made here. That alone could take a pretty good while!

I have to call a woman that Stephen referred me to re: the CHD tent at The Walk. I have to get some info from Stephen too, about how many volunteers he'll think I'll need to run the tent, and what he has in mind exactly. I'm waiting for a response about us meeting for lunch. Talking via email is counterproductive and frustrating. And we have much to discuss about what he wants/needs me to do with his efforts in founding a chapter of Little Hearts locally.

I'm pretty excited about it, but things have slowed from that frenzied pace I was at a week ago. I wish it would get busy and crazy again though, right now I have too much time to think and too much to think about. I've been really weepy and emotional lately, and I'm not enjoying it one bit. Need.more.projects. (or an off switch on my brain.)

To that end, I spent part of the day drafting letters to each of the doctors who ever saw or treated Nova, except Dr. Watts, he has never responded to the last letter, and I refuse to harrass the man. I will send them all out over the next few days, and there are a considerable number of doctors who saw Nova, probably more than I've seen in my entire 34 years.

I've sold 2 photo cuddlers, so I have $14.64 (I had beginning balance of 4.54 + 2 photocuddlers@$5 ea, minus Paypal fees) to go toward the other girls (from Grieving Hearts) CHD program. It isn't much, so I'm going to donate it all to her, so she can make this thing work. God knows I've gotten quite a lot of support in all that I've been doing since Nova died, and I want to give back. Wish I had the whole $200 she needs. Of course, the Photocuddlers are still for sale and if you'd like one (or a dozen) go here.

Also, I convinced Stockpins.com to add a congenital heart defects awareness pin to their inventory - only because I went to live support and asked if they had them and stated that most places don't carry such a thing, blah blah... The support rep asked me to send the colors and layout and he'd find out if they could make them. They decided they can, and quoted me a price. A very reasonable one. However I'm not sure if they'll actually be adding them to the inventory, or if that was just because I told him that I knew someone looking for 100 CHD Awareness pins (the above mentioned woman for her CHD program.) However, if I ever want to order 100, and have $140 to spend, I know where to get them!

posted by Erin @ 9:08 PM   0 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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