Friday, May 19, 2006

Good good and good

So most of you read my blog and Nova's both, and are most likely aware of the fact that I've decided to compile a list of agencies and organizations that would be helpful to CHD families in need of financial assistance with their medical bills. Man what a daunting task. I had no idea! According to Dr. Watts, there are 105 hospitals that perform the surgeries, so I'm trying to start out with a list of those 105 facilities.

I've also learned that there are hospitals that, in special cases, perform the surgery for free. Loving that idea, now to find them! And there are still agencies, like The AHA, Easter Seals, United Way, The ARC and such that provide support too, and I've got to get them all listed and contacted. I've been amazed how quickly the list is growing thanks to the help of other CHD parents. I'm making huge strides toward completing it. It may only take weeks, rather than months (as I previously thought) before I get it under control. This makes me very very happy.

In the middle of all my research and under the absolutely wonderful loads of emails I've been getting in reference to this project, I've also been contacted by several people with websites and organizations who'd like to add the list once it's complete. Wonderful! That's the whole point here, to get the list out there so people in the moment so to speak, don't have to do so much work to find what they need - I mean, there's no way I could have done this sort of search while Nova was hospitalized, and frankly, CHD parents shouldn't have to when they're facing down death. Let's be honest, they are. 40,000 kids died from CHDs last year, and that's only a small percentage of the total of CHD babies that were born and treated.

Anyway, that's a soapbox I won't climb (wait, I already did didn't I? heh) I'm just saying I'm busy as hell with it, and already seeing results from it, before it's even close to completion. And on top of that, I've been getting a huge 'bolus dose' of generosity and unity that makes my heart all full and fuzzy.

I spent a good deal of time on the phone today, part of which was with a woman who has twin babies, 16 months old, one of whom has a heart defect. Her life sounds like a wild ride, and mine seems ultra calm in comparison. It was really nice to talk to someone who "gets" what it's like to have a CHD baby, someone who understands the terminology and the issues. Of course, she understands even more than I, because she's living with it in a way I never did. I commend her on the fact that she's got even one shred of sanity left in her!

I also got invited to take a major role in a new publisher, (Promise of Light Publications)a new (affiliated) website/forum, there is talk about a possible reprint of Poetic Acceptance, and an anthologized collection of Haiku and Tanka (so send them to me if you have any you'd like to see in print, and we'll let you know if we can use them!) Plus, I was invited to lunch by two different women, both of whom I met while we were at the hospital with Nova, both of whom I would LOVE to spend time with.

I also (thank you Erin!) received (yesterday) a copy of Bad Twin. For our fellow LOST freaks, you understand and appreciate the magnitude of importance I place on that book. If you don't, well, you aren't really a Lostie!

AND, tonight I made Chicken Cordon Bleu for dinner, and it SO didn't suck! I've never made it before, and was amazed by the simplicity! Man, someday, when I have to impress someone with my (faked) culinary talents, I'll make that. MMM MMM GOOD!

So, I'm feeling good, and beyond hectic (weird sort of euphoria has taken over this evening) and I'm off to play in some HTML. :)


  1. The frenzy of activity you've surrounded yourself in makes me feel all warm and fuzzy. Just the tone of this whole post- it's such a huge leap from where you were just a few days ago. Yay! And what a neat thing you're doing- taking so much of the legwork out of the journey for so many families that will face the same things you did with Nova.

  2. So, send me your recipe.

    I'm glad to see you've found another project (or severak). I'm sure this will be as successful as the others. You have a way of getting things done.

  3. You got me all vamped up... and what's with the LOST reference (tv show, right? if not, then I really am lost!) Did you know it was filmed here! Yep, I was driving up to Dillingham beach a couple of years ago and there were airplane pieces EVERYWHERE, and we were like "dude, when did this plane crash? and why hasn't it been on the news?" That's when we pulled over and asked some random guy on the beach what happened and they said they were filming a show.

    Roy and I got HOOKED on season 1, but have only been able to catch 2 or 3 episodes of season 2. (guess we'll have to wait til they sell it, we HAVE season 1). They kept switching the times on us!

    Sorry so long... I kinda got too excited about it. Sorry.

    Oh, but PLEASE don't write about what happened, it's gotta be a surprise still!

  4. And since I'm still here, have you seen "the 4400"? Oh. My. God. It's supposed to premier (season 3 now, I think) sometime in the summer. CANT. FREAKIN. WAIT!

    Ok, I'll leave now.