Guided by a Star

The Charlotte Weekly article came out today. It's titled "Guided by a Star." written by Regan White. I loved meeting her, she's such a sweetheart - and the email I got a day or 2 after our interview made me smile and cry at the same time, and this piece, well, I think it's awesome. And the title... How perfect is that title? :)
Click on the pics to read the actual article.




Anyone who has a spare copy of this story that would be willing to send it to me, I'd sure appreciate it. I can't seem to find any more - just the one copy we have, and I need at least one extra copy for Nova's memory book!

Play Date #1

OK, I'm a hermit. I never go anywhere. This means that Terra, at 3, has very little experience with other children her age/size. I was a little worried about whose ass she'd kick at the park today. She surprised me, and was an angel. She slid and swung and ran and jumped and rode the little airplane and blew bubbles and drew pictures with sidewalk chalk and played amazingly well with all the kids, regardless of age, and there were MANY there that were younger and smaller. She was so well behaved and so polite and really good at taking turns and not being pushy. It was amazing! (If only she'd be so well behaved at home!) I met Lord knows how many other moms from the group (whose names I will never remember!) The weather was perfect, and MAN did Terra sleep when we got home!

I think this should pretty much be a daily thing.

Truth is, I'm not normally the 'mommy group' type. I have never belonged to such a thing, online or off, I've never been to an event where a bunch of strangers got together just so their kids could play together. I was not only worried that Terra would be that kid, I was also worried about my reaction if some other kid decided to be that kid and pick on Terra. But you know, I was just as worried that we'd get there and they'd peg me for the geek I am.

We had such a good time, the other moms were great, the kid were alllll so good. And, well, damn it I feel old and domesticated and whatever, but I really enjoyed it and I can't wait till the next one!

America's Best Contacts and Eyeglasses

America's Best Contacts and Eyeglasses.

That's where I get the kids' eyes done because you get an eye exam plus 2 pair of glasses for $69.99 plus tax. If you knew my kids, you'd understand why they need two pair each. They always have a backup pair for when the inevitable happens. As a kid, I cared for my glasses as if I loved them. I didn't love them, I despised them, but I had a certain fondness for breathing, and if I'd have broken my glasses, my mother would have made sure I missed out on lot of breathing. Being a different kind of mother than my mother was, I decided that fear should be used sparingly as a child rearing resource, and just get them 2 pair, therefore avoiding the necessity of making them fear that I might, someday, deprive them of breath.

The problem with that is that the nearest America's Best is a 45 minute drive away, and in a different state, still a Carolina, but a different state nonetheless. I despise the drive almost as much as I despised my coke bottle bottom glasses. Terra has developed a horrible habit of getting car sick in the first 5 minutes of any trip. The other 40 minutes were spent begging her not to throw up between her frequent threats to do just that. Sometimes we win. Today, an hour and thirty minutes of travel time, and somehow, we won. Thank God.

Tomorrow morning we have a play date at a park about 15 minutes from the house. We'll be in Trish's van. I hope we win tomorrow too. We've never gone on a play date before. I'd like to avoid arriving at our first covered in chunks and smelling like sour milk, thanks. Frankly, if she pukes in the van, she'll be depriving me (and Trish) of some of the joy of breathing, and I've already covered this topic...

Despite the motion sickness worries of the trip, I did enjoy the scenery. All along side the interstate are forests that have been devoured by kudzu. Kudzu finds its way into my poetry a lot. Kudzu is cloying suffocating deadly stuff - at least to the forest that bears the weight of it. From a distance though, it creates a mysterious picture that intrigues me. I wish it was the mystery that appealed to me rather than the suffocation that I identify with so well.

Anyway, I think I almost wrote a poem (on the palm of my hand of all places) and that's more than I've been able to say for months.

choices.

So, there's a chick in a nearby town who has a fundraising event that sort of resembles a cook out/family reunion type thing. Bounce house etc for the kids, live band, silent auction, free food, $1 drinks (including beer! yay!) and it raises funds for Fragile X because she has 2 children affected by it.

I attended her event this year, the same day we went to the Heart Walk. It was a lot of fun actually, and the food was awesome. The kids had a great time, and with a $10 entry fee (for adults only - 12 and under was free) I'd say she probably raised a pretty good chunk o' change for her cause.

I'm trying to decide whether to have one of those or a charity golf tournament. I know kids and cookouts, I don't know golf, despite the fact that I live 25 miles from Charlotte, which seems to be quite the golf mecca. Therefore, I am leaning toward having the cookout/bash event.

So, I'm fishing around looking for info and doing some preliminary planning. I feel sure that I can find sponsors to donate drinks, and quite possibly even the food, because that's my world - restaurants. I think we can handle the concessions, considering pretty much this whole damn family has experience in food services. Manpower is no problem. I could probably find a local band to donate their services for next to nothing for the sake of publicity. But Heather's bash had the bouncehouse and a dunking booth. I'm thinking these are high dollar things, so I start shopping around for the price on rentals. I found one that's $75 per day, and the second item would only be $40 more. So, that's $115. I plan to make this an annual event, so that's $115 every year. Or, I can buy them on eBay. More expensive now, cheaper in the long run. I can't decide, since I don't have ANY money to spend on bouncehouses or anything else right now. So, what do you guys think? Wait until next spring and rent the stuff? Or save up and buy it?

$100,000,000

So, in 2003 Paul G Allen (co-founder of Microsoft) founded a research project to map the genes in the brain. It was called the Allen Institute for Brain Science and the project was soon dubbed "The Brain Atlas". It was financed by Allen himself, with $100 million in "seed money."

The project had some troubles along the way, floundered a bit for a while, but has recently been "completed."

Initially, in my research, I stopped around the point of the floundering, and was temporarily and secretly happy that it had, as the last site I visited stated, died. It isn't that I actually begrudge research into other medical areas, but obviously, I feel that the same amount of money and man hours should be being devoted to solving the mystery of congenital heart defects. To my knowledge, no one is (or ever has for that matter) sunk $100,000,000 into congenital heart defect research. There are dangerously few CHD research projects at all, and I say 'dangerously few' because babies and children are dying from a simple lack of knowledge.

$100 million is a LOT of money. The brain is obviously a very important component of the body, and understanding it will obviously benefit multitudes of people. I don't want those people to miss out on their cure, but I do want the 40,000 kids born every year to find their cure damn it. Put it in perspective with me ok? Four thousand babies every year are destined to die with in their first 2-3 years because there is so little research funding available. I've lost 2 babies in 5 years, and you've all been so compassionate and sympathetic; you've all been touched by the magnitude of that loss. But, 200,000 children have been born with a CHD and (other than mine) 19,998 babies have died in those 5 years.

Where's our $100,000,000?

speechless

I have another blog, one no one ever visits. Well, not no one exactly. It averages 6 hits a day... Today, there have been 4 visits. It's lossofachild.blogspot.com and it's part of what I called the Poetic Acceptance for grieving parents network, the sister site to poetic acceptance.com, which I started as a tribute after I lost Alexis. It never went anywhere, never accomplished anything. The forums at poetic acceptance got shut down because the only posting going on was gambling and/or porn bot spam. The store does no business, the blog gets no hits. It has been a miserable failure.

When Nova was born, I had decided to shut it down and got talked out of it. You know, "You've been given bad news, you're stressed out and emotionally overloaded - just leave it there, come back to it later..." I agreed at the time. Seemed like perfect advice. I figured I'd just start pumping some life into it after we got Nova fixed up.

Yes well. Plans change eh?

Truth is, I don't see the point in paying the hosting fees every month for a site that gets no visits, and I can't seem to find the motivation to post on the blog anymore either. There was one wonderful article added by a guest poster, but mostly, I've done a lot of copy/paste/link type posts that haven't required a lot of input or thought.

The one good thing that's come from the blog there though... a blog I've found called everything is under control. I see her URL in my stats a lot (well, a lot is relative, maybe it's a bad choice of words when used in reference to a site who sees single digit traffic) The author there has lost 2 children too. Her circumstances are different than mine, but does it matter how you lose children? The pain and grief and general emotional turmoil is basically the same.

Her style reminds me a bit of my own. Good days, bad days, sad posts, silly posts, trying to find balance through honest reflections about her days and her experiences, no matter what kind of day she's having.

Go read her. She's wonderful. She leaves me speechless more often than not.

nothing - and some stuff

I have nothing to say, or at least, when I came here I didn't, I'm sure I'll think of something though... Anyway, I am posting simply because I cannot stand, for one more minute, to see myself standing there, on stage, with my hair all screwed up and my mouth hanging open, like I'm about to rip into a karaoke rendition of some damned Hee-Haw song or an impersonation of the Dukes of Hazzard Yee Haw yell.

Yep, I still pretty much have nothing interesting, so I'll give you the latest Nova news, and some random thoughts. Nova's CHD quilt block is finished. They sent me a pic via email yesterday. You can see it and read about it at Nova's Heart. The reporter from Charlotte Weekly emailed today asking me to forward some pictures of Alexis and Nova to use in the story that comes out this Friday. I sorted through all sorts of pictures to find the ones she and I wanted to include. Hard. There were pics of Alexis that I hadn't looked at in years, like this one:She had so much hair. I always thought she looked almost latino, such long thick black hair, like me, and perfect olive skin like her Daddy. She had his eyes too, but you can't tell it from this picture.

Trish is putting together Nova's memory book for me. In trying to round up the things we wanted in it, I realized I have no idea where I've put his shot records, his birth certificate, death certificate or the name card from the hospital. Today, I realized that all of his medications are still on the shelf in the kitchen over the sink. I thought about throwing them away this afternoon, but they're still there.

Heart Walk Speech

The beginning is pretty hard to hear, and for some odd reason, I look like I'd been drinking red kool-aid (lmao!) but here I am in all my redneck glory!

The Cleansing

When I woke up this morning, I grabbed a cup of coffee, did a bleary eyed email check, added a couple of entries to the Tarheel Tavern, and headed outside for a cigarette, (and all before 8am this morning!) It was so beautiful this morning. It's so obviously slipping into Fall. The air is clearer, drier, and just has that Fall quality to it. It was so pretty it hurt, cliched Carolina blue sky and puffy clouds billowing by. It was also obvious -despite how clear it was at the time- that it would rain before the day was over. You could smell it, plus, the fireants were in an uproar. The old timers forecast winter temps by the wooly booger caterpillars, us youngin's predict rain by the frenzy of fireants.

But between Fall mornings and September rainstorms there are, sometimes, summer afternoons. It took all I had to stay strong and leave the A/C off. It got hot, and despite having all the windows open and the exhaust fan on, it was pretty darn uncomfortable. Then, of all things to have for dinner, I made lasagna. One ridiculously large pot of boiling water and 25 minutes of the oven being on at 375 degrees, and it hit miserable ranges of heat and humidity in my house. It had me wishing it was 7:30 am again.

Now the rain has come, thank God, and gone. Just a quick shower as the sun began to set was all it took to cool it off and make me smile again. I love the rain, in case I haven't ever said so before. With or without thunder, it's just, well, cleansing. My only regret is that it stopped so quickly. My mental status is pretty grimey lately. I could have used a longer cleansing.

Tarheel Tavern #83

Heard the Word of
Blog?

Tarheel Tavern #83. Can you believe we've run this for 83 weeks without missing a single installment? Nothing short of amazing there!

Before I get started with this week's Tarheel tavern, I'd like to call your attention to the new Carolina Bloggers Blogroll in the right sidebar. I don't know why it's taken me this long to create this blogroll, in retrospect it seems like a no brainer that I should have done a long time ago! It's a pretty thorough list of NC bloggers, particularly those who participate in the Tarheel Tavern. If you don't see your link there, email me! If you know of any Carolina bloggers that I'm unaware of, regardless of their participation (or lack thereof) in the Tavern, email me! And if you'd like the code to add the blogroll to your blog, email me!

Now for the Tavern, pull up a stool and partake of the Carolina goodness!
Iddybud sends in a blog about one of the Clinton Global Initiative workshops. She was there to document this "working session and discussion about the humanitarian crisis in Darfur with actor Don Cheadle from the film Hotel Rwanda and others." One of the final comments was "to clone Don Cheadle!" Sounds like a plan to me!





Abel Pharmboysent in a post about an interview with Tim Westergren about Pandora Radio. What's the matter, don't know what Pandora is? Go read the post! It's pretty interesting what Tim and his group does, and I can see exactly why Abel would want to do that interview, and Tim sounds like a very interesting guy!


Colonel Corn sent me a stroy that was both interesting, frustrating and sweet; it was about thunderstorms and his lovely wife. His wife found herself in a soggy situation and thought he should document it. He did, but the romantic mood of the post was what left me moist around the eyes.

Waterfall ran her first 5K! Last weekend I walked 3 miles and felt winded, I don't think I'd have lived through running it! She, however, "loved running this race." Makes me think I should get off my butt and exercise every once in a while! But one thing I did understand was how good it felt to be in a throng of participants. There's definitely something to be said about being in a group of like-minded folks.

Laurie made Chicken and Dumplings and it looks wonderful. I'm absolutely positive that the fact that all the ingredients were local or organic makes it taste better than all the store bought processed ingredients I'd have used. She always makes me feel like I'm really missing something by not being more green.

Bora sent me a list of links to choose from, and I was most tickled by the one titled Finding Readers in the Most Unusual Places. It's funny sometimes how and where you come across people who read your blog, isn't it? Too bad she was a substitute! It might have made for a really great relationship with his son's teacher!

Billy sent in a poem called Nature or Nurture. Like one of his recent comments here on one of my blogposts, it made me sort of introspective. Maybe sometimes there are no answers, and maybe sometimes there shouldn't need to be. Wish I could convince myself to adhere to the philosophy of this post he sent me.

Scrutiny Hooligans blogs about The Need for Protest Music. He did in fact, show his age, with his talk of records and cassette tapes. Made me feel old, but then maybe that's a left-over from my reaction to Waterfall's post? Regardless, The overall theme was "Turn that shit up!" as well it should be!

Laura at Moomin' Light Took a few minutes to brag on her husband, and rightfully so! He's found (or, actually, founded) a studio for his art The place looks gorgeous, and I hope he's ridiculously successful. There's just nothing like following your heart and finding a way to make your dreams come true.

Ogre shares a patriotic video that I think we should all take a minute to watch. I'm not very big on war, and I think Bush is an ignorant ass, but I've got nothing but the utmost respect and admiration for the men and women who are (and who have in the past) fought to protect America.

etbnc atMy Blue Puzzle Piece has been rearranging and reassembling his pieces, and invites us all to take a peek. He'd love to hear your thoughts on the layout and the content. Personally, I love the look of the place - it's a perfect fit for the title.

And then there's me. As you all know, since we lost our son in April, I've become very involved in raising funds and awareness for Congenital Heart Defects. The Heart Walk was last weekend, so the fundraising is over (for now) but my quest to raise awareness continues. I was recently interviewed by Lenise Ligon of WBTV for a short spot on the news. I can't help but wonder if any of you saw it or even realized it was me. Anyway, you've all heard me spout the statistics, but on September 29th in the Charlotte Weekly there will be another article, and on October 8th in the Charlotte Observer will be yet another that I've done. I'd sure appreciate it if you'd share a copy with a friend or family member who hasn't heard the story, and help me raise even more awareness.
And that, my dears, finishes up this weeks Tarheel Tavern. Hope you enjoy surfing through your neighbors' thoughts. Next week we'll be meeting over at Bora's Place. See you there!

PS: I woke up eeeearly this morning to find another submission in my inbox, I was more than happy to add it, so if you've got a submission and think you're left out because you missed the deadline... well then you don't know me very well! Send it in, I'll slide you right in there!

Frech Coffee and Crap

The air conditioners have been off for about a week - the weather is perfect. If it would just stay just like this forever, I'd be ecstatic. There's that feel to the air, that distinct fall-is-coming feel. It has an emotional impact on me that I've never really been able to describe, or understand. It's something like nostalgia, a strange unnamed longing, though I can't say exactly why. It would be easy to blame it on grief, and maybe it is a left-over from losing Alexis this time of year, but mostly I think it's just an Erin-quirk.

When I was doing the interview yesterday, she took a few pictures under the dogwood out front, the one I've always called Mona Lisa. She's heavy with red berries. It's beautiful, but again, makes me strangely sad. That one though, that one I understand, and it isn't about the seasons so much as it is about a specific experience, one I won't hash out again.

Christmas is coming. I've always been a little scrooge-ish to be honest. Even as a kid I never really enjoyed the holiday, not because I didn't get enough gifts, but because I got gifts at all. I've never been good at getting things.

Of course, losing Alexis made Christmas a different entity all together. I can't help but think about what we'd have bought her, how she'd have reacted to the lights and presents as she got older... I can't help but miss the sparkle that I imagine would have been in her eyes. This year though, Christmas is going to be even tougher. Last year we got to bring Nova home for Christmas, and that was a surprise, we didn't know we'd get to bring him home, and Christmas was beautiful. Our first Christmas without him, so soon after what should be his first birthday, will be a sharp contrast to last year. I've already been dreading it for months.

See, losing a child is hell, losing two is, well, just an assload of shit for one lifetime, but it isn't just the loss... It's an ongoing life-long experience that colors every part of your life from that moment on. Then there are the follow-up pains. There is always the child's birthdate and deathdate... With Alexis, these were 2 dates just 12 days apart, plus Christmas. Now, it's August 17th, August 29th, December 2nd, Christmas, and April 6th. Then there are the dates of the funerals that are significant, which are September 4th and April 11th, and any surrounding holidays. We buried Nova 5 days before Easter, so there goes Easter - which is compounded by the fact that Scott's brother died this year on Easter Sunday... Then there are the abstract dates. It's hard to celebrate your own birthday when you know you have a child (or 2) that never had the chance to have theirs, it's hard to celebrate New Year's Day when in your mind you're just starting another year without your child/ren... And these are the things that someone who's never 'been there' doesn't even think about.

It ruins your whole damned life frankly, and it's hard to find joy again when every month seems to have some emotional attachment or mental reminder. It's easy, so damned easy to let yourself slide into a day like I'm allowing myself today. I knew this would happen after the Heart Walk was finished, and I also know that I need to just let it happen rather than trying to avoid it.

The good news for the day is that a few weeks ago I filled out a survey about the Senseo Coffee Pod System. I figured it was bullshit, but it said if you qualified you'd get a free Senseo. Mine arrived today. I'll probably never use it because I drink coffee by the pot and this makes single cups but it's so pretty!! All electric blue and sleek and fancy. Today, I'll take my good news in single cup serving :) Want one? Click here.

all his doing

I had the pleasure of being interviewed by The Charlotte Weekly today. Can't wait to see the end result. It'll be released on September 29th, and she told me today that she'd like to do another story in the Spring, to boost Team Nova's "presence" so to speak. Isn't that awesome!? The Charlotte Weekly will be followed by The Charlotte Observer piece on October 8th, which will have an internet version that I'll link to. I'm still hoping that Leesa can upload the video of me on stage, and I'm also still waiting in hopes that Lenise Ligon will send me a copy of the WBTV piece. Of course, if I can, I'll share them both. Plus all of this stuff will go into Nova's memory book, because it's all his doing.

On Skinny Models

On Skinny Models and the Broohaha over BMIs

I've always had what I consider a weight problem. I don't know what my body fat percentage is. Do you? Well, all I know is that I get told I "need to eat a cheeseburger every now and again," a lot. I weigh 112 pounds, and, other than during pregnancy, this is the heaviest I've ever been. I don't suppose "heaviest" is really a good choice of wording, is it? But the truth is, overweight people complain about finding clothes that fit. At 98 pounds, which I weighed most of my life, you can't find clothes that fit. Nothing hangs right (most everything hangs OFF actually. At 98 pounds, I can't even find a bra that fits, let alone shirts. If I was girlier, I'd go spend 100 damn dollars on a water bra or silicone inserts. Actually, I have done both in the past. In the past few years, it's been easier to find pants that are small enough, shirts that fit a little better, but now that models HAVE to be a certain size? Yeah, we'll see.

My point is this: If I were beautiful and tall and, you know, model material, I probably wouldn't be allowed to model, because I'm too skinny. Do I think this thing with regulating models' weight is a good thing? Absolutely. The reality is that very few people fit the skin-n-bones template that the fashion industry glamorizes. Most women can't possibly wear the styles they put out there. I think they'll find that they'll sell more stuff if they make it in realistic sizes and styles. But you know what? They need to make some shit for scrawny asses with no boobs too, ok?

We aren't all anorexic or bolemic or half-starved. I love me some damn Pringles and Ding Dongs, and my cholesterol level is probably through the friggin' roof because there's nothing better than a big ole rare slab o' meat. And I'll be damned, if I'm going to go through the trouble and expense of cooking, no way in Hell I'm puking it back up voluntarily!

Some of us are just built like that people, and it ain't always a good thing. I'm going to the attic to dig out those gunny sack outfits I used to have to wear. They say everything comes back, right?

:|

This post

This post will most likely not make me any friends, but I have to say this:

Why is it that we feel that America has to right every damned injustice in the world?

Yes, there are some causes that I feel strongly about and will fight to the death for, obviously, I mean I've been utterly obsessed about the lack of CHD awareness and research funding for 5 months now, but I think you all realize that I take that personally because it's affected me personally.

For example: I am not, nor do I understand how anyone else is, feeling indignant about the men who had to put their hands in boiling oil to prove they didn't embezzle money (in India I believe.) Nor am I writing my congressmen to raise a stink about a man in... what country was it? I don't remember- but he was forced to marry a goat because they caught him screwing it... Nope, I find that one amusing actually. And there are people somewhere (again, can't remember the country) who have been sentenced to death for infecting patients with HIV. I don't know if they did it or not, and frankly, it isn't my problem, or that of America, if they hang/stone/beat them to death.

There are millions upon millions of people worldwide who are being punished in some arcane fashion for millions of things. No, I don't neccessarily agree with what's going on but I can't find it in me to need to fight for them all. Nor do I believe that America should.

I think America is far too involved in foreign countries' affairs as it is. America is an entity, much like a person, and one person can only fight so many battles, and a wise person carefully chooses which battles to fight. America shouldn't be interjecting itself into every damn situation all over the world, no matter how wrong it is. It just isn't our responsibility!

We, as a nation, are so convinced that we're superior, we're so damn conceited to think we have the right to force our ways on other cultures. We think that the way we do things is "the right way." Well, looking at the stuff in OUR news should be enough to prove that theory wrong. I think we need to concentrate on our own damn country and our domestic affairs a little more, and a little less on other countries' problems...

*steps off her soap box*

more pics

This is Team Nova and Team CVRU together. This picture is going into Nova's memory book, because these are the women (the guys weren't able to come) who made sure we felt comfortable in the knowledge that Nova was well taken care of and loved while we weren't there with him.

This is another shot of Kim and Jacob. He has the most beautiful big smile

This is -well, it's pretty self explanatory eh?

This is Shanda and I. You can tell from my head that it was very windy early on, I swear, I really did brush my hair before we went!


This is the CHD awareness tent (and Kassi who is apparently trying to suffocate Brendon with a bunch of balloons!)This picture was taken after we'd been there about a half an hour. Notice the volunteers and all the people getting CHD info :)


This is Terra dancing in the empty tent after the Walk was over.


Just another shot of us all walking. Leesa is trying to get the thousands of people behind us to stop so I can stop running backwards to get this shot! They didn't really cooperate...

Zero Tolerance

This is absurd:
First-Grader Suspended Over Plastic Squirt Gun

Zero Tolerance in action. Nitwits.

Just in case you agree with me, you can contact the idiot principal at

Milton Moore Elementary
4510 Linwood
Kansas City, MO 64128
Jackson County
Phone: (816) 418-6825

Setting the TV Alarm

Sometimes my quirks cancel each other out. Like, quirk #1: I love Rosie O'donnell. LOVE her. I was ecstatic to hear that she was taking Star's spot on The View. Couldn't wait to see her on daytime TV again. Quirk #2: I no longer watch TV. Seriously, my TV stays on kids' programming all day. In the evening I'm too busy/distracted to watch TV.

These 2 things combined mean that, despite the fact that I have been looking forward to Rosie's return to TV, I have yet to remember to watch. So, I finally, thanks to Trish's suggestion, set my reminder to go off when The View comes on in the morning. How ridiculous is that? I'm such a nerd. But even more ridiculous is the fact that I'm beside myself with excitement about watching TV.

Anyway

There's nothing like a good professional photographer to turn something you hate into something you barely notice. But can photos be cliche? 'Cuz I think the one is going to be cheesy and cliche, but I'm not telling why, in case they use it, then I'll just show it to you.

*whew* one more interview to go and I'm done for a while

It started raining right after the photographer left, and right now there is THE most beautiful rainbow right over my house, and my camera won't work. Bastard.

We forgot to pick up the rest of the pictures from Walmart today. Damn it. Tomorrow. I promise.

Shanda, one of my favorite nurses, who was at the Heart Walk, emailed me :) I love her, I love them. Seriously. I want a job at the hospital just so I can see them every day. I miss them. 45 days of insanity and emotional hell forged such a bond, made me feel so close to them. So connected. There were days when I was so tired of being there, so tired of the medical roller coaster and all the doctorese, but them, them I loved every minute. Crazy how connections are made isn't it? Those women will forever be a part of my daily thoughts. Dr. Watts too. People are confused I think by the fact that I adore a man who couldn't save my babies - but you'd have to experience it to understand, so I'm glad you don't.

Truth is, they spent so much more time with him those last 6 weeks, knew him inside and out literally...

Anyway.

Today has been kind of crazy, I'm frazzled. I want to work on this layout some more, I like it, but it needs a bit o' tweaking.

Yet another, but with purpose

Yes, I am this indecisive that I've already redesigned. Although Scotty would disagree, faeries aren't me.

The picture I used for the top looks a lot like the cemetery where Nova and Alexis are buried, without much work I could almost convince myself that it actually is the cemetery - and it sort of reinforces my new line 'let what you love be what you do.'

A reminder is all, a beautiful reminder of why.

me pirate name

Your Pirate Name Is...

Lieutenant-Colonel Firecrotch

What's Your Pirate Name?

Arrrrr Matey

Today is National Talk Like a Pirate Day. September 19th every year, as a matter of fact, National Talk Like a Pirate Day. I've been to the Talk Like a Pirate website and I have to tell you, I'm not at all sure why today should be/would be/is a day where we all blog in a voice that reminds me of Mr. Crab from SpongeBob Squarepants. I do know that it says "Because we're guys, and because we can."

I'm not a guy does that mean I can't? I just don't know. The real question is, do I want to?

Well, I wanted to want to so I thought I'd hunt around and convince myself. So I went from the website to the blog to the videos. These are evidence of true dedication!



Note that they even get the kids involved. And that's where I figure I really do want to do this. I've got photographers coming from the Charlotte Observer today, and I'm thinking pictures of our family dressed as pirates in the newspaper would be funny. I don't think the kids or Scott'll go for it.

Nicked from Stegbeetle,

Nicked from Stegbeetle, who nicked it from Wulfweard, who nicked it from Jaffajane who nicked it from....etc

1. (X) Smoked a cigarette.
2. ( ) Crashed a friend’s car.
3. ( ) Stolen a car.
4. (X) Been in love.
5. (X) Been dumped.
6. (X) Shoplifted.
7. (X) Been fired/laid off.
8. (X) Been in a fist fight.
9. (X) Snuck out of your parent’s house.
10. (X) Had feelings for someone that didn’t have them back.
11. ( ) Been arrested.
12. (x) Gone on a blind date.
13. (X) Lied to a friend.
14. (X) Skipped school.
15. (x) Seen someone die.
16. ( ) Been to Canada.
17. ( ) Been to Mexico.
18. (x) Been on a plane.
19. ( ) Purposely set a part of yourself on fire.
20. ( ) Eaten sushi.
21. ( ) Been skiing.
22. (x) Met someone in person from the internet.
23. (X) Taken pain-killers.
24. (X) Love someone or miss someone right now.
25. (X) Laid on your back and watched cloud shapes go by.
26. (x) Made a snow angel.
27. ( ) Had a tea party.
28. (X) Flown a kite.
29. (X) Built a sand castle.
30. (X) Gone puddle jumping.
31. (X) Played dress up.
32. (X) Cheated while playing a game.
33. (X) Been lonely.
34. (X) Fallen asleep at work/school.
35. (x) Used a fake I.D.
36. (X) Watched a sunset.
37. (x) Felt an earthquake.
38. (x) Touched a snake.
39. (X) Slept beneath the stars.
40. (X) Been tickled.
41. ( ) Been robbed.
42. (X) Been misunderstood.
43. (X) Petted a reindeer/goat.
44. (x) Won a contest.
45. ( ) Ran a red light.
46. (x) Been suspended from school.
47. (x) Been in a car accident.
48. ( ) Eaten a whole pint of ice cream in one night.
49. (X) Had deja vu.
50. (X) Danced in the moonlight.
52. (X) Liked the way you looked.
53. ( ) Witnessed a crime.
54. ( ) Questioned your heart.
55. ( ) Been obsessed with post it notes.
56. (X) Squished barefoot through the mud.
57. (X) Been lost.
58. (X) Been to the opposite side of the country.
59. (x) Swam in the ocean.
60. (X) Felt like dying.
61. (X) Cried yourself to sleep.
62. ( ) Played cops and robbers.
63. (x) Recently colored with crayons.
64. ( ) Sung karaoke.
65. ( ) Paid for a meal with only coins.
66. (X) Done something you told yourself you wouldn’t.
67. ( ) Laughed until some kind of beverage came out your nose.
68. (X) Caught a snowflake on your tongue.
69. (X) Danced in the rain.
70. ( ) Written a letter to Santa Claus.
71. (X) Been kissed under the mistletoe.
72. (X) Watched the sun rise with someone you care about
73. (X) Blown bubbles.
74. ( ) Made a bonfire on the beach.
75. ( ) Crashed a party.
76. (x) Gone roller-skating.
77. ( ) Had a wish come true.
78. (X) Worn pearls.
79. ( ) Jumped off a bridge.
80. (x) Ate dog/cat food.
81. (x) Told a complete stranger you loved them.
82. ( ) Kissed a mirror.
83. ( ) Sang in the shower.
84. ( ) Had a dream that you married someone.
85. ( ) Glued your hand to something.
86. ( ) Got your tongue stuck to a flagpole.
87. ( ) Kissed a fish.
88. (x) Sat on a rooftop.
89. ( ) Screamed at the top of your lungs.
90. ( ) Done a one-handed cartwheel.
91. (x) Talked on the phone for more than six hours on one occasion.
92. (X) Stayed up all night.
93. (X) Didn’t take a shower for a week.
94. ( ) Picked and ate an apple right off the tree.
95. ( ) Climbed a tree that had a tree house.
96. (X) Been told by a complete stranger that you’re hot.
97. (X) Ever had a one night stand.
98. (X) Ever missed someone so much it still hurts to think of them.
99. (X) Ever loved someone that you knew wouldn’t love you back.
100 ( ) Ever been to a professional football, or tennis game in a stadium ground.
101.( ) Went hiking in the mountains.
102.( ) Smoked a cigar.
103.(X) Had a crush on someone you worked with but never told them.
104.(x) Wished you had the chance to change your profession.
105.( ) Ever cremated and kept the ashes of a pet you cared a lot about.
106.( ) Wished you could live your life over again from age 21.
107.(x) Been baptized?
108.( ) Rode a horse.
109.(x) Sent flowers to someone you never met

Ringing again

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What's that I hear!? It's The Ringing of the Bards!

TTHT #82

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Conversation is always better around the kitchen table, don't you think? The Tarheel Tavern is up in Mel's Kitchen (though I didn't know that until just now!) and I'd like to invite you to come listen to the chit-chat!

WNCNN

PRESS RELEASE
Western North Carolina News Network Launches Political Program
September 18, 2006 - Asheville, NC

Western North Carolina News Network (WNCNN), created by local political organizer, Gordon D. Smith, is political satire presented as a cable news program in the vein of Steven Colbert's The Colbert Report and Jon Stewart's The Daily Show. WNCNN will air weekly on Mondays on numerous internet sites including YouTube.com beginning on September 18, 2006. The series intends to highlight the shortcomings of Republican incumbent Congressman Charles H. Taylor through the use of satire, sarcasm, and visual humor.

Smith says of the show, "Too many people are turned off by dryly produced news programs and nasty campaign ads. WNCNN is a way to learn more about Charles Taylor and have a good laugh at the same time." Exclusively aired on internet sites, WNCNN's target audience is made up of the "netroots", a broad-based demographic of politically minded internet users. The weekly series will be available at Youtube.com (http://www.youtube.com/user/wncnn), DailyKos, MyDD, BlueNC, Scrutiny Hooligans, and a host of other political blogs and websites. "Scores of political blogs and websites will link to the series and will advertise it through a graphic logo at their sites," Smith added, "We expect to have 10,000 viewers for our first episode, and we'll see where it goes from there".

WNCNN is not affiliated with any campaign or political organization. It is an example of netroots activism with a sense of humor. The weekly series will, through newsdesk style performance and on-the-scene "reporting", lampoon the record and reputation of Congressman Taylor. "It's all in good fun," Smith says, "and it's a good way for people to learn more about the incumbent." To view the first installment and future installments, go to http://www.youtube.com/user/wncnn. To contact the show's creators, writers, actors, and producers, email them at wncnn@yahoo.com.

Nova's Job

You know, life has gone crazy in the last year. Last year at this time, Erin was pregnant, still unaware of her child's heart defect, pretty smug in the idea that the universe had pulled the rug out from under her enough for one lifetime. She was thinking about cribs and booties and tiny diapers. She waddled, she smiled, she worried, she was hormonal and ate too many Pringles. She was happy in the monotony of being a mother. She was content with mostly-silent grief.

Only the Pringles remain.

Losing Nova has been a different experience than losing Alexis. I've said before that where she shut me down, he opened me up. I knew after Nova that I was not alone, and that there was a need beyond my own, and a positive way to express my grief, my pain, and my frustration. No one ever told me that after Alexis, no one had to after Nova - he did it.

But even as I thought about how to keep a handle on life through loss, and considered ways to fulfill Nova's purpose, the one thing I did not ever contemplate was being some sort of local mouthpiece for the CHD cause. I'm a behind-the-scenes kind of person, not an on-the-stage type. Looking back on the last 5 months, I still wonder how I ended up where I am, because it certainly was no intentional move on my part.

That isn't to say that I regret it, I'm here now, wherever that may be, and, being rain, I go with the flow, find ways over and around obstacles, seep into the spaces that need filling. This is my new space, and I'm happy to fall into this puddle, and hope that it becomes a pond, a lake, an ocean. I want to continue to change the things that need changing.

But the truth is, without the Heart Walk to concentrate on, I'm not sure which direction to go in now. There are things I have planned for next year's Heart Walk, but that won't even restart until next year, and I know I can't only do that - I have to find other ways to accomplish things. Other things to accomplish. I just don't know exactly what, or how.

I suppose I've got some thinking to do. Some people to talk to, and somehow through all of this, I've got to find that "new normal" that I don't want to have to find. I miss my babies, and I want to do something, but I think I have to learn to live again while I'm at it. Losing Nova has really changed me - anyone who's ever lost a child will tell you that it does that, changes you. I'm thankful that this has been a positive change, but it's a change nonetheless, and I have to get a grip on who I am now, get to know this new me and how she sees things. I mean, this Erin has been on the stage, been on the news, and had/is having newspaper articles written about her. She's not a behind the scenes person... I don't know how to be the star, that was Nova's job.

Heart Walk 2006 pics (2)

This is Jacob. He's an adorable kid, with the most awesome smile! Here you can see his arm brace - he gets his real cast on Tuesday, but this also shows the sticker on the back of his shirt. It's an "In Honor Of" sticker. It says "I'm walking in honor of" and he wrote "ME" because he was born with a congenital heart defect. I learned yesterday that so was Leesa. Although I don't know exactly what hers was, the fact that she's walking for the AHA and pushing her grandson, it's proof that plenty of CHD patients live long full lives!

Me on stage before I had to talk. The girl in pink and purple is Lenise Ligon. She's pregnant (like, PREGNANT) but you'd never really know it to look at her.
(Erin, look at my feet :) )


Scott in the background, pushing Terra (who you can't really see), me, Kory behind me, Leesa and her grandson, Lisa, and Daniel, and Kassi the sign holder in front - with the Coke can that made it into almost every picture that had her in it!

Lisa and Leesa are still trying to figure out how to get the video to her email and send it to me. Bless her heart I'd have given up, I'm a technotard with stuff like that, but she's still at it, because she rocks. I'll let you guys see it when she sends it to me. I wish I'd have been able to tape the whole event! I mean, looking down on a crowd of 7000 people would have just been an awesome shot!

Lenise said yesterday that she'd try to get a copy of the news piece for me, and if she can I'll get it up too. I'm still dumbfounded by how much it didn't suck. That's what I need in life, a professional editor :)

You know what? I just found out that there's a LIVE WEBCAM in Charlotte that shows the corner where the Heart Walk was. You guys could have been WATCHING! Damn it, I didn't even know there was one or I'd have linked to it :| Pisser.

If ya want to see the corner (now empty of course) it's here, labled Center City. The camera angle, with the way the stage was set up, you'd have actually been able to see me on stage lol.

Heart Walk 2006 pics (1)

There are many more pictures - Blogger decided this was my photo allottment for now. Plus, I have to wait for our pictures to come back from being developed, and Mel took a lot of pics with her camera too that she's going to email to me. I haven't even seen them yet. The pictures here come from Kim and Lisa's cameras. I'll add more when Blogger gets its head out of its butt :)This (click it for the full effect here ok?) is a shot of the throng of walkers snaking through Charlotte. We were actually pretty close to the front, and it snaked much farther behind us than it did in front of us! (SEVEN THOUSAND PEOPLE.)
This is Kim, the wonderwoman who found the sponsor that financed the biggest part of the t-shirts.
Jacob, Daniel and Mackenzie (my daughter has a crush on cute lil Jacob here, but don't tell her I told ya so!)
Lisa and Daniel
Terra was pretty fond of this guy. I was afraid she'd be scared of him, but she even gave him a kiss.
A shot of us.
The Littlest LeClairs of Team Nova - gotta love the look on Terra's face!
This is Kory's favorite shot of the day. Him, with a group of seriously hot Panthers Cheerleaders. They were so hot Scott even commented, and Scott never comments on other women!

Heart Walk 2006

Wooo HOOOOO!!!!
Oh man that was so much FUN! I got to see SO MANY of my favorite nurses, including Shanda, Mel and Tiffany who were at Nova's funeral, and Jane and... man there were so SO many! It was awesome to see them all again!! I saw Mika and Gina, and I got to see Lisa again, and meet her son Daniel, and her friend (whose name escapes me dagnabit) and I finally met Kim and Jacob and Mackenzie, and I met Keisha and Ramiah. I also saw Jennifer and Aiden, thank goodness, because I've been trying to get a hold of her but her email addy went poof when my moontown email account went to the shitter. Terra and Aiden were holding hands and flirting, oh my god it was adorable!

Pictures are forthcoming - and also a bit of video, which brings me to the other thing that happened!

Several months ago, shortly after signing up for the Heart Walk, we were invited to what they called The Heart Walk Kick-off, which basically was a chance to meet people and get a feel for ways to raise money and stuff. The night before I had a dream that they were going to call me up to the front and make me do some sort of motivational speech. Of course, that didn't happen, but it's made me a little wary about things since then. Well, I knew that they had again chosen to use our story as part of the opening speech, like a motivational thing, and that they wanted me up on stage - like they did at the Kickoff. You know, "this is Erin, here's a 10 second summary of her situation..." Erin smiles and they move on to the next story.

So when they called me by name to the stage I said to Kara, "Oh, lord, I didn't know they were going to call me up and introduce me like that!" And she says, "Oh you won't have to speak, just go on up!" So I did. At which point they put a microphone in my hand...

Lenise Ligon (a local TV anchor - she did the TV interview with me) talked a bit and then told me to tell my story... on the stage, with a microphone, in front of SEVEN THOUSAND PEOPLE! So, I did. I think... I don't remember what I said, I might have told them about what I had for dinner last night, what do I know? I was too freaked out to think, or remember! But Lisa's nifty lil camera does video, and she's going to email it to me. If I didn't make a fool of myself, I'll post it :)

Three miles is a lot longer during the day, in the sun, in a huge unruly mass of bodies, than it was the few times I walked 3 miles at night. Man, it was long, and hot, and FUN! I enjoyed all of it, every bit. I ended up right beside Lenise Ligon for part of the walk... It was cool to just be able to talk to her like we were, oh, not friends but, you know, not like she was some sort of icon either, which is how I'd have felt about it if I'd found myself walking beside her last Saturday!

Someone (I can't remember WHO right now daggum it!) said they think I've found my calling. I think they might just be right. I was in my element, although I have to admit that there are conversations I'm a little unsure on the details of. There was so much going on that I think I didn't process certain information very clearly, because I was trying to have so many conversations and do so many things at once.

Especially whatever I said on stage. I really just can't remember!

I don't even care though, I had such a good time, and I raised awareness, and Team Nova raised over $5000, and I got to see friends and my beloved nurses (I wish Kandi and Jessica and Scott and Vivian and Dianne and Shawn and... and everyone else, just ALL of them, had been there! I missed you guys, but I know, someone had to work last night and today) and it was really good family time too.

As my kids would say:
Awesomness.

Thank you all again for being part of it with me! And thank you Erin and Gretchen for the last minute donations last night!

I'll get the pictures up ASAP!

If I'm not entirely mathematically challenged, I think it would only take $352 to take my total to 4000. What dya think? Can we do it?

3 year old minds

I'm considering another redesign.

I can't help it, I love Paint Shop Pro, and making graphics makes it possible to avoid personal interaction, which I'd very much like to do right now. "Why?" You ask, "when you seemed so upbeat just hours ago?"

Because children, at 3, cannot understand things, and when you're sweet littlest one gets all excited about doing the Heart Walk, and you wonder why she's so thrilled (knowing it isn't the satisfaction of giving because a 3 year old really don't understand giving so much just yet...) and find yourself in a conversation that goes something like this:

Terra: We're gonna go bye bye Mommy?
Me: Yes baby, tomorrow we're getting up reeeeeeal early to go to the heart walk
Terra: Now Mommy? I need my shoes on!
Me: No not yet honey, tomorrow.
Terra: We're going bye bye Mommy!?!?!
Me: Yep, in the morning, tomorrow, after we wake up.
Terra: We're gonna go for a walk Mommy? In Charlotte?
Me: haha, yes sweety we are...
Terra: To go get Dophalin!?
...
...
Me: *hug* No honey, not to get Donovan.
(Exit stage left straight to bathroom to bawl.)
(Still bawling.)

Well, right then, life sucks, and you get lost in crap, and interpersonal relationships seem, well, overwhelming.

Go team Nova!

Team Nova has raised so much more than I'd ever hoped when I first decided to join the Heart Walk! I'm flabbergasted, and I reserve that word for special occasions, ok!?
And to top it off, Kim's son Jacob is in the lead for a separate contest to see who can raise the most money online. He got $800 in donations today, and I just got this in my email! YAY Jacob! Hope that makes up for breaking your arm on Wednesday!

The prize is a $500 gift certificate to the Off Broadway Shoe Warehouse. That's a whole lot of shoes! I wish they'd have been running this contest back when I first started, I'd have won if it were running during the first 2 weeks after I joined lol.

Just got done with the reporter who read her story to me. It hasn't been to the editor yet so it isn't the final version, but it did give me a good handle on what it's going to be like. I kept telling her that I didn't envy her job of keeping the timeline straight, maintaining the emotional impact while having to spout details about medical details. I think it came out pretty well! THIS story WILL have a web version (as far as I've been told anyway, and I'll link to it when it comes out. I'm not going to say a word about the details of it. That would ruin it!

The Charlotte Weekly story will be out on September 29th. I haven't even done that interview yet, and I honestly have no clue what direction she'll be going with it, but I'll find out on the 22nd when she gets here ;)

You Are Rain

You can be warm and sexy. Or cold and unwelcoming. Either way, you slowly bring out the beauty around you. You are best known for: your touch Your dominant state: changing

What Type of Weather Are You?

The new design and my goals

The new design and my goals

There's less than a week now until the Heart Walk. Five Two days really. Just TWO days left to donate for this cause that is so dear to me. Other than having my children, I've never believed in anything as completely as I believe in this. I know I've not only met my goal, but surpassed it and I should be content with that, but I'm not. So much more needs to be done, there is so much research that isn't being done. Knowing that leaves me feeling helpless, powerless. I want to change things.

It's inspired this new blog design, and the change in the wording in the header. "Let what you love be what you do." is a quote from Jalal ad-Din Rumi, and I'm taking his advice. I love my children, and fighting to change this thing that killed them is what I'm doing, and what I'll continue to do. And that's why I set my goal and continued to raise it each time it was met, and if there were time, if I thought for one minute I could raise another $427, I'd raise it to $4000. I know that the fact that the little thermometer is full is probably discouraging people from donating more, and all I can say is, please don't let it. My personal goal for this walk has been reached, but there's a long way to go before CHD stops killing children. So yes, I've raised over $3000, and yes, the mercury in my thermometer has reached the top, but I hope that some of the new readers who haven't donated yet will still fell led to donate.

My Television Debut

So. The interview was on TV tonight, and I didn't suck, I didn't make stupid faces, trip over my words, slobber and... My hair wasn't sticking up! Bonus! Actually it came out better, albeit shorter, than I expected. I did notice that I'm VERY white, and the shirt I wore makes me look sort of pregnant, not particularly good things, but it wasn't too bad. Terra however, looked absolutely adorable showing off her Team Nova T-shirt.

It was a 2 minute piece, so there wasn't much room for me to screw up ;)Of course, itmay have only been a 2 minute piece because that was all that was left after they edited out all my goofy faces and screw ups!

The piece basically used my story with Nova and Alexis as a centerpiece to talk about CHDs in general, and to promote the Heart Walk. They showed me surfing through Nova's blog, and I'm hoping to get some folks to his blog who saw it on the news tonight. They didn't exactly give the URL, but they showed the page, with the Nova's Heart header, and in the address bar it just said ".blogspot.com" so hopefully they'll find it and read some and make some donations :)

There isn't anything about it on their website, but I did tape it, and yes Erin, I'm trying to find a way to either make copies of the tape, or get the blasted thing on the web... any ideas how to get from VHS to the web? I'm a technotard when it comes to things like that. I'm clueless. And with only one vcr, I don't know how I'm even going to make copies!

Groundhog Day

You know that movie "Groundhog Day?" That's what grief is like. You have to do the same thing over and over. You get through one day only to wake up and realize that you have to do it all again. You think you're tired of hearing me go on and on about Nova? Try living it.

And today is such a perfect day to feel the way I feel today. It's wet and bleak - raining without storming, light but not bright, just grey and crappy and long. These are the days I fight the urge to go the hell back to bed.

Thank you Rich

Just when things seem like they're going well, something happens to screw things up. Seems Scott's computer has contracted the Amish Virus and won't boot up.

Thanks Rich.

I'm gonna be on TV!

I'm gonna be on TV!

I just got done doing a television interview with Lenise Ligon from WBTV! She was interviewing me about my involvement with the American Heart Association's Heart Walk on the 16th. Not only will I be on, but they had Terra model the team shirts, so she's going to be on TV too!

It'll be on WBTV News at 7pm Thursday, and again on Friday morning somewhere between 5 and 7am in case any of my local readers want to take a peek at my adorable little girl!

Certifiable

The shirts came in today! Woo Hoo! They look awesome! I'm so happy they came and now I don't have to worry about them anymore! *whew!* Thank you Cafepress! You ROCK! They're so pretty, and so very very valuable to me, that I can barely bear to unfold one. Lord I hope I don't get anything on mine!

In other news, it looks like my telephone service (and cable and internet) are being screwy. Time Warner is having "issues" apparently. Issues that cause things like my IP address (and Trish's) is showing up as a California IP, my phone doesn't always ring when someone calls me, and my voice mail is on the blink. And apparently, these issues have been going on, unbeknownst to me, for days.

My phone rang at 7:30 this morning and, being still sound asleep, I didn't get to it before it went through to voice mail. So I check the messages, and there are all sorts of messages that weren't there before, from people who called yesterday - only the phone never rang when they called. The same thing happened yesterday, only guess what message was there? A message from the reporter that didn't show up... only the message was left on Friday, and it didn't 'go through' until yesterday!

We can call off the search teams now, the reporter is fine, and actually did call to reschedule, only Time Warner decided that I didn't need to know that, for two days.

I won't do the interview with her until the 22nd. But bright and early tomorrow morning the film crew for WBTV will be here. I'm absolutely terrified of it, but I'll get through it just fine.

Right?

Good lord what have I gotten myself into? Trish? You will pay for this. Bawk bawk my ass bitch. You.will.pay. Haha, you know I love ya, but damn! For the rest of you who don't know wtf I'm talking about, I fully intended to say no to WBTV, not because it isn't a great opportunity, because it is, but television and I just don't go together. My dearest friend in the world talked me into saying yes (she threatened to give me hell and squawk like a chicken every time we talked if I didn't do this interview) and so, I'm doing the interview - and she now laughs at me every time we talk (hahaha I made ya doooo it, I made ya doooo it.) I'm now on the hunt for any media outlets that would be interested in doing a spot on children with special needs. I mean, it's a cause that could use more attention, and I think Trish is just the one to tell that story...

I've taken to obsessing about the ticker at the Kintera/AHA site. The event goal is $1.2 mil. Right now it's at $800 thousand and some change. I check it hourly. I even took to writing down the totals so I could calculate the hourly average donations. In order to reach the $1.2 mil, there has to be an average hourly donation rate of $1941.75 from now till 7am Saturday morning. Think that's doable? Yeah, probably.

I'm a ball of nerves right now. I should be cleaning or something. But I'm not.

And Erin? They are Dalmation Mollies, and one of them is pregnant, and I'm fighting the urge to go get another tank, just for her. I am feeling this unbearable urge to save her babies. I know, it isn't natural damn it, but I'm not so keen on 'Nature's order' lately. For chrissake, I'm considering saving some baby fish. I'm officially certifiable now.

An Introduction

This is my son Nova.

He was born December 2, 2005 with
a Congenital Heart Defect.

When he was just 11 weeks old, he underwent open heart surgery to correct his defect. He spent eight hours in surgery, on the heart/lung machine, while the surgeon repaired his malformed heart.

Over the next six weeks there were several complications additional surgeries, and other procedures. Sadly, despite the doctors' diligent efforts, he passed away in my arms on April 6, 2006. He was just 4 months and 4 days old.

We are obviously devastated. He simply couldn't overcome the odds against him. He was a beautiful boy, so strong, and so inspirational. He was just learning how to smile, just discovering that he could laugh. I miss him desperately every day. And you see, Nova was not the only child that Congenital Heart Defects have taken from me. His sister Alexis (pictured on the right) died of a similar heart defect nearly 5 years ago.

People tend to believe that my losses are unusual, but they're wrong.
People think that Congenital Heart Defects are rare. They aren't.
Congenital Heart Defects are the nation's leading cause of defect-related infant death, and the most common of all birth defects. Nearly 40,000 children will be born with a cardiac defect this year, as many as 4000 of them will die. But doctors often can't tell parents about what causes these defects, or how to prevent them. There just hasn't been enough research, and unfortunately, there isn't enough funding to back the necessary research projects on this subject.

In an effort to change that, and to help other parents avoid the same devastating losses I have experienced, I've dedicated myself to raising awareness, and funds through The American Heart Association.

On September 16, 2006, there is a fundraising event called the Charlotte-Metro Heart Walk. It's designed to raise funds and awareness simultaneously by hosting thousands of walkers on a three mile course through uptown Charlotte. Funds go to cardiac research.

It is important to me that Nova not be defined by his death, but by the number of people who are touched by his short life. For that reason, I've created "Team Nova" and joined The Heart Walk in September. I’d like to invite you to help me give meaning to his 4 months on this earth by joining me in my fight against Congenital Heart Defects. My personal goal is $1000 $2000 $3000 so please, visit my "Team Nova" web page at

http://heartwalk.kintera.org/charlottenc/novasheart

and make a donation. That can be done either online through the website, or by printing a donation form from the website and sending a donation via postal mail to the address listed on the form.

If making a donation isn't an option for you, please, take a moment to post a link to this post on your blog or website, or tell someone you know who might be interested. Raising awareness is just as important as raising funds. As long as CHDs are unknown to the community, the lack of funding will continue to be an issue.

Tarheel Tavern

Heard the Word of
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Billy the Blogging Poet has done it again, and quicker than most! Guess all that flying he's doing is doing him some good ;)

The Book Meme

I've been tagged with the book meme. Rain said that she'd tagged me and that, though everyone else's participation was required, mine was optional. Well of course because I didn't have to play, I had to play! I have to play not just once, but twice, so here it goes!

Grown Up Version:
1) A book that changed my life: Actually, I think there have been several. The first was actually a children's book, that was actually a single poem formatted as a child's book and illustrated. It was the poem "Fog" by Carl Sandburg. I loved it so much that I fell asleep with it every night for years. That one book/poem is what I credit for my love of poetry and writing.

2) A book that I've read more than once: I rarely read a book more than once, but I'm rereading "Another Roadside Attraction" by Tom Robbins right now.

3) A book I'd take to a deserted island: My thesaurus. I'm pretty addicted.

4) A book that made me laugh: Don't Stand Too Close to a Naked Man - Tim Allen & all of Tom Robbins' books.

5) A book that made me cry: I don't read tear-jerker books (or, see #8)

6) A book I wish had been would hurry up and get written: For a couple years my answer would have been "Dark Tower" of the Gunslinger Series by Stephen King. Now that it's been written (with the most horrible ending EVER) I can't think of any others I'm waiting for.

7) A book that should never have been written: Poetic Acceptance

8) A book I'm currently reading: Slowly, and when I can handle it, I'm reading "The One Year Book of Hope" -Nancy Guthrie and "ABC's of Healthy Grieving" -Harold Ivan Smith & Steven L. Jeffers, and like I said above, I'm rereading "Another Roadside Attraction"

9) A book I'm planning to read I've procrastinated finishing: "The Coming Judgement of Nations" -Grant R. Jeffrey. It's just too steeped in religious jargon, and mathematics. So much so that I've been trying to read it for years, and probably will never finish it.

And the kid's version:
1) A book that changed my life: See #1 above.


2) A book that I've read more than once: "Goodnight Moon." Each of my children has owned their own copy, and I've read it so many times that I can recite it from memory. It's just a great kid's book. Also, "Guess How Much I Love You."

3) A book I'd take to a deserted island: A book of Adlibs. Surely that's years of fun!

4) A book that made me laugh: Stoo Hample's Book of Bad Manners. Any book that begins with a picture of a little girl eating boogers and ends with a little boy mooning someone is funny stuff.

5) A book that made me cry: Love You Forever (I'll love you forever, I'll like you for always, as long as I'm living, my baby you'll be...") and "Water Bugs & Dragonflies: Explaining Death to Young Children" - a gift to Terra from E2

6) A book I wish had been would hurry up and get written: I'm not waiting for the release of any new children's books...

7) A book that should never have been written: "Help! Mom! There Are Liberals Under My Bed!" By Katherine DeBrecht and "Why Mommy Is A Democrat" by Jeremy Zilber. (Thank you Michael for pointing these out to me! You're right, they're horrible!)

8) A book I'm currently reading: "Butterfly Eyes" This is a new one we got very recently, from the Observer reporter. It's a wonderful book, alternating between poetry and short stories - the illustrations are beautiful, not the typical cartoon style of children's illustartion. But Terra hasn't been in the mood to sit still long enough to read this all the way through yet.

9) A book I'm planning to read I've procrastinated finishing: "Please Mommy Don't Cry." This isn't actually a children's book, it's a book for grieving mothers, but it's written from the deceased child's point of view, looks like a children's book, and is illustrated much like a children's book would be. I can't make it through it just yet.

the race is on!

I got up early and dusted and vacuumed and got everyone dressed, Scott went to work. I obsessed about things like putting the clean dishes away and you know, the little stuff I'd see that needed to be done before the reporter arrived. I got everything done and blogged a bit, then worried that there were things that weren't done, and went back to cleaning things that were already clean. All this nervous energy (and frustraton over the geneticist's findings) had me wired and feeling like I was rushing around like crazy.

So when the reporter didn't show up at 4, I said something to Scott, who said that after I spoke to her one the phone the other day, I told him that she'd be here today at six, not 4. OK, I don't doubt it. I should have written it down because I really don't remember things very well lately.

So anyway, now realizing that she's supposed to be here at 6, I figure it's time to cook up a speed dinner. Begin cooking at 4:25, we were eating by 5, done and cleaned up by 5:45, and hurriedly waiting for the reporter again. Yes, hurriedly.

Well, it's 8:03 and she isn't here yet.

She didn't show up. But it isn't bad enough to be a no show, she's also a no call. I tried to call her, thinking hell, knowing me, I got the damn day confused too, wtf do I know!? (No not really, I'm positive about the day lol) Anyway, I called her and got her voice mail at work. Still no call back.

Those of you who know me know that I've spent 2 days screwing up the guts to do this, you know I've been a nervous wreck contemplating what I'd say, how I'd answer certain questions, and worrying that if there were pictures taken, I'd be making some horrible face in each of them. I've been doing all of the above for 2 days, for nothing.

Pffft.

So, I'm thinking it's pretty damn unusual for a reporter to contact a person, request an interview, and then blow it off, so now that I'm over the nerves and past the irritation, I am concerned that maybe something happened. I'm concerned, not because she didn't show (because shit happens you know?) but because she didn't call. I mean, that's just weird, right?

So.

But hey, I did my hair and put on make-up and got 'kinda' dressed up. Anyone want to babysit for me so Scott and I can go out on a date while I look pretty? Oh, wait, it's race night - never mind.

Isn't happening

In 2 hours the Charlotte Weekly reporter will be here, and here I sit, blogging. Heh. Guess I'm not too damn nervous.

Nova's been gone over 5 months now, and I just got the genetics results in the mail. Sure, we'd already gone to talk to Dr. Wagstaff, but getting the paperwork is just... Different.

The results are a sort of summary of their findings for both Alexis and Nova. They put Alexis' last name as Monahan. I hate it when they do that. She never came home from the hospital and because of that, and her very young age, she was always pretty much called "baby girl Monahan." Like she never deserved her own name.

Basically, all it says - in doctorese, is that neither of them were positive for 22q 11.2 (a.k.a. DiGeorge Syndrome) Apparently the Chromosome analysis and 22q 11.2 FISH deletion analysis were normal on Alexis, and Nova had further testing, a chromosome analysis, the 22q11.2 FISH deletion analysis and a subtelometric probe FISH analysis (I don't even know what this 'subtelometric' is, or what FISH stands for) and all three were negative.

There is no reason for my children to have had their heart defects because:

The only currently known cause of familial pulmonic atresia with ventricular septal defect is 22q11.2 deletion, which was not present in either Donovan or Alexis. I am only aware of one report of pulmonic atresia in parent and child. Nothing is known about the possible genetic basis of recurrence of pulmonic atresia with ventricular septal defect in siblings. I have tried to determine if research studies were being carried out on families that have had two or more children with this congenital heart defect, but I have not been able to find any research projects looking at this question.

That was hard enough to know before they died, harder to hear after they died, and unbelievably frustrating to see in print.

The only good news in the letter was that the geneticist believes that if we were to have another child, we'd have a 25% chance of the same thing happening again. That's considerably lower than the 40% he quoted at the appointment in May (or was it June? Who knows.) So Yay! We have a one in four chance of having another heart baby. Glad I got my tubes tied, even though I still cry about the fact that I can never have another baby.

At least he was sweet enough to add that he was

"...sure that this has been very difficult for Ms. Monahan and Mr. LeClair to have two children pass away from the same severe heart defect. I assured them that the cardiac problems in Alexis and Donovan were clearly not caused by anything that either of the parents ate, drank, smoked or were exposed to either prior to or during the pregnancies. I think that the risk of similar cardiac problems in children born to any of their other children or other relatives is very low.
I enjoyed meeting with Ms Monahan and Mr LeClair. I encourage them to contact us with any further questions.

No point in contacting them, they can't answer my questions. It must be frustrating to be a geneticist in a situation like ours. There just aren't any answers, not until there can be more research, which obviously isn't happening...

Ass Kickin'

These are the numbers for the whole team. As you can see, not everyone hit their $200 goal, but as a team we far surpassed the goal!


I even got an email congratulating me on meeting my personal goal. You guys should have all gotten one of those, lord knows it was all of you that met my goal! Wish I could give each of you a big hug!

I ordered the team t-shirts on the 4th, they were supposed to be shipped out on the 6th, they still weren't shipped as of noon today. There is SO little time left, I started to freak out and called cafepress.com's customer service #. Seems there's a glitch in their system that made it so the order didn't actually get logged! But, because cafepress has the most awesome customer service, they expedited the order, shipped it this afternoon with upgraded shipping (1-2 day I believe they said) and deducted all shipping charges! Yay Cafepress!

Brendon came home with another donation today, from one of his teachers. She trusted him with a $20 bill, right in his pocket, no 'security precautions' at all. That's trust eh? That'll show up in his account probably Monday.

I have an interview with Charlotte Weekly tomorrow at 4pm. An interview with WBTV (local tv station) on Tuesday, possibly another interview with the Charlotte Observer reporter one day this coming week (though I won't swear she'll need to see me in person again before the story comes out) and The Observer's photographers will be at the Heart Walk on Saturday. I'm so freakin famous that I'm feeling the need for a sports car and plastic surgery! Yeah, whatever.