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.
Sunday, September 17, 2006
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.
Saturday, September 16, 2006
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!
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!
Friday, September 15, 2006
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.
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 ;)
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.
There's less than a week now until the Heart Walk.
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.
Thursday, September 14, 2006
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!
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!
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