Nova's Heart - 4 months of life, a lifetime of love

Saturday, September 30, 2006

I need your help guys. I'm trying to compile a list of professional athletes and/or celebrities who are CHD survivors, or who have a child with a CHD. I only know of one off-hand, Shaun White. He's the reigning Olympic Gold Medalist in Snowboarding.

Y'all know of any others? I'd really love to know about more! If you do, could you leave a comment in the replies? pleeeeeeeeeeez. Thanks!

posted by Erin @ 10:06 PM 7 comments

Friday, September 29, 2006

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.

posted by Erin @ 7:23 PM 4 comments

Wednesday, September 27, 2006

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?

posted by Erin @ 5:33 PM 0 comments

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?

posted by Erin @ 1:37 PM 0 comments

Tuesday, September 26, 2006

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.

posted by Erin @ 9:07 PM 0 comments

Yesterday, after hours of panic and searching everywhere I can think of to look, I realized that I have no idea where Nova's birth certificate, shot records or name card from his basinette are.

Today, I realized that the Iron drops, gas drops, baby Tylenol, and the crusty remains of a bottle of Nystatin still sit on the top shelf over the sink.

posted by Erin @ 6:33 PM 0 comments

Monday, September 25, 2006

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!

posted by Erin @ 12:07 PM 0 comments

I got this in my email this morning. It is Nova's block in the CHD Quilt. They're fixing the death date as we speak, because as you can see, the year is wrong, but they responded immediately when I pointed that out, and I had visions of them typing email with one hand and pulling stitches with the other. It's such a wonderful project, and so big. There are, according to the website, 37 finished quilts, and 4 more that are unfinished, and apparently enough blocks made to constitute 45 quilts. There are 42 CHD children honored on each quilt. That's 1890 children, and many many more whose blocks are not yet made, including Alexis. I'm sure seeing all the quilts assembled in one place is a real statement to just how many children and families are effected by CHD, and that's such a small sampling of the true number. They're constantly working to catch up with the requests they have, and getting more and more requests all the time.

I hope some day they get done.

posted by Erin @ 11:20 AM 2 comments

It's hard to come to terms with the fact that Nova's been gone so long already. Nearly 6 months, half a year. That seems like such a long time. The hospital visits, the surgeries, they seem so long ago, so far in the past... But April 6th, the last time I held him and rocked him, is still so fresh. It doesn't make sense really. I don't suppose there's any rule that says that any of this should make sense, but sometimes the way things don't make sense anymore really bothers me.

Things not making sense would seem to be something that, through experience, I should be pretty comfortable with. Truth is, I'm no more comfortable with the chaos and craziness, I've just started to learn that I'll never understand it. Accepting that is the first step in working around it, right? I mean, when there's an elephant in the middle of your living room, you can walk around him, or you can waste a lifetime trying to push it out of your way.

I've been doing pretty well with ignoring the elephant, stepping around him, but today I can't concentrate on anything else. I don't know what it is, but he sure has my full attention.

posted by Erin @ 1:26 AM 0 comments

Saturday, September 23, 2006

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.

posted by Erin @ 2:01 PM 0 comments

Friday, September 22, 2006

So the newspaper story in The Charlotte Observer will be out on October 8th. It will have an internet version, and as soon as it's up, I'll link to it. I'm looking forward to seeing what the truly final product will look like. At first I was so nervous about it, but now, I'm just curious. The anticipation is killing me.

Today I did the interview for the Charlotte Weekly. It will be released on September 29th. The reporter was here and she was pretty great. She told me she thinks I'm an inspiration. That still embarrasses me, but the truth is, I hope I am. I hope that Nova and Alexis, through me, inspire people to find ways to make a change, to raise awareness, and to find the answers all of us are lacking. I hope that before I die, someone can tell me why my kids had severe congenital heart defects, and why they died.

Leesa is still trying to find a way to take the video of me speaking at the Heart Walk and send it to me. I think it's just too big to email, so I suggested youtube or photobucket. I promise to get it up as soon as I can.

I'm still hoping that Lenise Ligon will be able to send me a copy of the WBTV News spot I did with her. All of these things will have a place in Nova's memory book, they are things he did, and belong there.

posted by Erin @ 9:51 PM 0 comments

Wednesday, September 20, 2006

After the Heart Walk I turned around and there was Jennifer. I met Jennifer when Nova was in the hospital, her son Aiden had his 3rd surgery while we were there, and Jennifer and I hit it off. After Aiden was moved to the floor, we would go upstairs between our visits with Nova sometimes, and just hang out with Jennifer.

Anyway, she found me at the Heart Walk and she had Aiden with her, and Terra was smitten, I mean just utterly and totally in love with Aiden. She couldn't keep her hands off of him. At first he held her hand willingly but after a while she sort of overwhelmed him I think. I must remember, when she's older, to teach her about the word "intimidation" and its effect on dating.

posted by Erin @ 9:11 PM 3 comments

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...

posted by Erin @ 8:46 PM 1 comments

Tuesday, September 19, 2006

I wrote this the other day when I realized that a local website I recently joined accepts articles from its members. They ask that the articles broach a subject that has some impact on women. I'm unhappy with the abrupt ending, but if it's accepted it will be read by women all over the US. I suppose I should have edited and revised a bit more before submitting it, but I think it will at least get through to some of them if it's accepted. I'll let you know when I find out.

Learning Life's Lessons
through Repetition
by Erin Monahan

As little girls, most of us dreamed about the big wedding and the flowing white gown. We fantasized about our perfect man, the knight in shining armor, or gallant prince that would sweep us off our feet. Then, most of us moved on to thoughts of motherhood. I personally had my first child’s name picked out by the time I was twelve. It was going to be a girl, and her name would be Micaela Elizabeth. Her father would be rich and handsome and we’d be the perfect family and live happily ever after. "Micaela Elizabeth" was born when I was seventeen, just 6 ½ months after a rushed wedding. His name turned out to be Shane Thomas, and I divorced his (mean-spirited and financially destitute) father when he was three. Those were some of the earliest lessons I’d learn as a woman, a wife and a mother.

The next was when, in 2001, I gave birth to my fifth child - a little girl named Alexis Jade, all pink and perfect with big blue eyes and a head full of black hair - and buried her twelve days later because of a heart defect that required open heart surgery to redirect the flow of blood through her heart. That was when I learned that motherhood was not a guarantee. It was also when I decided to emotionally close up shop. One of the sad realities of womanhood is, unfortunately, that babies can and do die. I shut myself up in a dark place with that knowledge. But, as cruel as it sounds, life goes on. And it did for me after Alexis died… eventually. After a while I went back to work, I cared for the other children, and went through the motions. I tried to be a good wife, and I had another baby. It was another girl, our daughter Terra, with a healthy, perfectly formed heart. I was so grateful that she was healthy! But Alexis’ death still colored everything I did with Terra. I still missed Alexis, and was terrified that somehow, I’d lose Terra too.

Two years later, shortly before I was due to deliver my seventh child, we learned that we’d be having a boy, and that he’d be born with a heart defect too. His heart was almost exactly like Alexis’ and would require life saving open heart surgery to live. We named him Donovan Zane, we called him Nova, because he was our little star. After he was born, we took him home for three months. We worried, we ran back and forth from doctor appointment to doctor appointment. We valued every second and spent every moment loving him. Oh how we loved him. And when we took him to have the surgery, for all the things we didn’t know, we were absolutely sure that he knew he was loved. Nova died after six weeks in the hospital. I held him close to me and told him again and again that I loved him. He couldn’t hear me then, but he knew.

In the 4 months he lived, Nova taught me more than I’d learned my whole life. Through him I learned that congenital heart defects (CHD) are the most common birth defect, affecting 1 in every 100 babies born, that nearly 40,000 children each year are born with some form of CHD, and that in most cases, doctors don’t know why. But more importantly, he taught me about bravery and strength and perseverance. From an infant who never spoke, I learned about purpose, and about making bonds. After his death, unlike after Alexis’ death, I reached out, I opened up, and I looked for positive things to do to allow Nova live on and continue to teach his lessons. I knew that I was not the only mother who’d lost a child, or the only woman who needed someone who understood. I knew from experience that there were women lost in grief. So I went out, being one of those women, trying to find those women like me.

That search landed me in an online grief support group called Grieving Hearts, it also led me to participate in a fundraiser through the American Heart Association - but most importantly, it led me to a stage where I told my story to thousands of people. It put me in contact with reporters who put Nova’s life and message into the newspaper and on the television, and I’ve used those opportunities to reach out to other grieving mothers and to offer them a brighter path. There are support groups for grieving mothers, and there are more and more support groups specifically designed for women whose lives have been affected by CHD. There are organizations out there to help fund research so that we, and future mothers, can have healthy babies without fear of losing them to heart defects, many of which have been founded by mothers of heart babies who need a positive outlet for their frustration, fear, pain and grief.

The lessons that Nova taught me about the fragility and impermanence of life enabled me to spread the word that we, as women, as mothers who‘ve lost children, are not alone, and we are not powerless. We’re a force to be reckoned with, and together, we can change almost anything!

posted by Erin @ 7:41 PM 1 comments

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.

posted by Erin @ 7:39 PM 0 comments

Sunday, September 17, 2006

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.

posted by Erin @ 7:08 PM 3 comments

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 Jordan, 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.

posted by Erin @ 1:42 PM 0 comments

Saturday, September 16, 2006

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!

posted by Erin @ 8:44 PM 1 comments

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!

posted by Erin @ 1:48 PM 3 comments

Friday, September 15, 2006

Stepping Out

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.

posted by Erin @ 11:59 PM 3 comments

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 ;)

posted by Erin @ 2:21 PM 0 comments

Wednesday, September 13, 2006

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.

posted by Erin @ 9:25 AM 1 comments

Monday, September 11, 2006

Blog Designs, and My Goals

There's less than a week now until the Heart Walk. Five days really. Five days. Five 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 me to re-design my main blog, and to 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.

posted by Erin @ 1:52 AM 0 comments

Saturday, September 09, 2006

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...

posted by Erin @ 2:25 PM 2 comments

Friday, September 08, 2006

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.

posted by Erin @ 9:02 PM 1 comments

Thursday, September 07, 2006

(click image to view full size)
$653! This is the check for the money that goes into Kassi's donations, from her school's hat day. How amazing is that!?

posted by Erin @ 12:38 AM 1 comments

Tuesday, September 05, 2006

Seems like my guts have become this writhing mass and it's been too hard to sort things out enough to really put words to them. All I get are little bits here and there, bits that don't make much sense and certainly wouldn't be much of a blog post. I'm feeling really restless, like there's something I'm supposed to be doing and I can't remember what it is. You know, Nova's been gone nearly 5 months now, and last night I caught myself about to yell at the boys for being too loud in the hallway near my bedroom. For a split second I forgot, for a fraction of an instant, I thought Nova was asleep in the bedroom and I was worried that they'd wake him up. I realized that it's mothering that I'm supposed to be doing, that's the restlessness.

My neice is going to be induced on Wednesday. She'll be doing the mothering soon. I want to go to the hospital and be there for her, but I don't know if I'll be strong enough. The numbers will be at work again. Wednesday is the 6th. 5 months to the day of Nova's death.

I am raw, again. More raw than I was for the first few months. You'd think it got easier, and it does, but this is that period during which the reality becomes undeniable, when everyone has gone on about their lives and I've run out of things to do to avoid the truth. Not only that, I'm having to really face, and in some ways relive, the experience by way of newspaper interviews. Do you know that I can't remember the details of Nova's surgery? I don't remember exactly what they did to his heart. I think I knew at the time, but the human brain has its own set of defense mechanisms, and forgetting is the first. Things get hazy, or disappear all together. So much so that I realize in retrospect that I've been incorrect with my answers to some of the questions that the reporter has asked. Like the day we found out that Nova's heart was broken. I didn't remember Scott being there, and even told her that I was there alone. I suppose I was in shock more than I realized. At the time, it didn't seem like such a surprise. It felt like the world fell out from beneath me, but not really surprising. Guess my mind was protecting itself again. When I told you guys, did I seem shocked? I don't remember. There is so much I don't remember.

I got an email from one of the nurses from CVRU tonight, one of my favorites, one who came to Nova's funeral. Some of them have started a Heart Walk team. I think it's wonderful, and I'm glad it's what they've decided to do. I would have felt badly if they'd done anything major for Team Nova once I found out that Mika had formed a team. She's so involved with CVRU, it would have made me feel badly if they'd have supported us more than her. I won't put them in such a position next year, it was wrong of me to do so this year. It sure makes me look like a selfish ass.

posted by Erin @ 12:33 AM 0 comments

Monday, September 04, 2006

Well, I'm waiting for some donations that have been sent via snail mail, and a couple of them are of unknown amounts, but it looks like I'm going to hit that $3000 mark after all. I'm excited and so grateful, but I have to be honest - it all seems a bit anticlimactic, and I'm sad to be finished with it for the year. Only 12 more days and it will be done.

I just placed the order for the team t-shirts. I will be an absolute nervous wreck until they arrive. I worry that something will be messed up and I won't have time to return them and have the corrected ones delivered. Call me paranoid, but the truth is, when I ordered my husband's work shirts for his company, they came without the graphic on the back side. I'm terrified that it will happen again, and all the sponsors are on the back! Please send nice warm thoughts to the quality control guys at cafepress that they will make sure that all the shirts come out right, because there won't be enough time to get them fixed and the sponsors paid for the shirts for the most part, and we cannot possibly wear shirts without them on the back!

The hat day at my daughter's school was this past Friday, that donation should show up on her donation page by mid-week. We have no idea what the total was, and we're all dying to know. She's so excited to see what her personal total is. The fact that her school did such a thing for her has made her self-esteem shoot through the roof, and that's an awesome thing for a skinny little girl with glasses and braces who just started at a new school. (Don't get me wrong - she adorable, and has a tendency to be pretty popular without any help, but I've loved watching the effect of the school's involvement on her.)

The day of the walk is going to start early, be full to the brim, and end late. We have to be there at 7am (it's at least 30 minutes drive to get there) to start filling balloons for the CHD tent. We'll pass them around to the crowd with some CHD literature, for a couple of hours. At 8:45 we go up on stage for the kickoff speech. At 9 we have everyone send up their balloons as simultaneously as possible, and then we all walk 3 miles. We'll be done with the walk by 11. Then we head back to break down the tent. Then we fight the throng of traffic to get back home, grab some lunch, freshen up a bit, then we're off to another fundraiser event that a local family throws every year to raise awareness about Fragile X syndrome. I've just recently met (online only) the woman who organizes it, and I'm really excited to actually 'meet' her and learn just what Fragile X is. At this point, all I really know is that both her children suffer from it. That goes from 4pm till whenever, and it looks to be a big event slap full of stuff for the kids to do, plus free food once we pay to get in. All the money goes to research for Fragile X. It may be the sort of idea I borrow and use to throw a similar bash next summer to raise money for the AHA's 2007 Heart Walk.

Yes, I'm already planning things for next year's walk. I am obsessed ;)

So there's some cleaning up I need to do here around the blog. I'm sure you'll all be happy to see the fundraising stuff disappear. But before it all gets gone, I want to say thank you to all the people that have supported my efforts. Expect pictures from the day of the Walk, and of course, the newspaper story will find its way here when it comes out. But basically, things will go back to "normal" soon, and posts will be more of the type of things I used to post, like poetry and stuff about Nova and other heart kids. I'm not sure exactly what direction to take this blog now, but I promise that, at least for a while, it won't be about fundraising.

Thank you all, again.

posted by Erin @ 3:38 PM 1 comments

Friday, September 01, 2006

I want to share something with you from the Saving Little Hearts website. Pretty dry reading, but it does explain just why I feel so strongly about raising awareness in the CHD arena.

Congenital Heart Defect Research Spending

On January 30, 2006, March of Dimes issued the following press release:

"Hidden Toll of Dying and Disabled Children; A Comprehensive Global Analysis Identifies Trends and Interventions."

The report noted the following five common birth defects of genetic or partially genetic origin combined accounted for about 26 percent of all such birth defects in 2001:

- Congenital heart defects (1,040,865 births)
- Neural tube defects (323,904 births)
- Hemoglobin disorders thalassemia and sickle cell disease (307,897 births)
- Down syndrome (217,293 births)
- G6PD deficiency (177,032 births)

Congenital heart defects were greater than the remaining four common birth defects combined.

Current estimates suggest there are 1.5 million people in the United States living with a congenital heart defect. Recent advancements in surgical techniques and medicine have increased survival rates for children born with complex congenital heart defects. Research over the last decade suggests that even when the surgical outcome is ideal, children with complex CHD have above average rates of learning disabilities, ADD/ADHD, psychosocial maladjustment and coordination problems.

A 1997 National Institutes of Health (NIH) funded study from Children’s Hospital in San Diego, CA published the following:

Percent of population estimated to have a learning disability as defined by California State Education Code:

- Total Population – 5%
- Acyanotic CHD - 12%
- Cyanotic CHD – 44%

There has been no further funding to investigate this on a larger scale or to develop a means to track and identify children who have a nearly 50% chance of having a learning disability.

The National Institutes of Health CRISP database provides historical data on all National Institutes of Health medical research from 1972 to present. A recent query using the following key words for years 2003-2006 revealed the following:

- Pediatric and Cancer and Outcomes = 128 grants funded
- Pediatric and AIDS and Outcomes = 99 grants funded
- Type I Diabetes and Outcomes = 76 grants funded
- Sickle Cell Disease and Outcomes = 53 grants funded
- Pediatric and Traumatic and Brain and Injury and Outcomes = 29 grants funded
- Pediatric and Heart + Defects and Outcomes = 7 grants funded

posted by Erin @ 1:48 PM 7 comments

OK Folks the deadline just passed for joining the photography raffle, which means I just drew the name of the winner. And the winner of the $100 Professional Photography gift certificate is a woman who presently lives in New York but will soon be moving to Union County, which means she'll be my neighbor, and a fellow transplanted yankee! Her name is Cindy, and I met her through a board called Union County Mommies, and several of the entrants for this raffle came from there. So, Congratulations Cindy! And thank you SO much to my other Union County neighbors!

The Deadline also just passed for Ryan's Blanket. There were only 2 entries there, but I cut all 25 little squares, shook them up, closed my eyes and pulled out a name, and Joyce is the winner there. Joyce is one of those sweet sweet souls with whom I have several things in commong. Her grandaughter is a 'heart baby' though she's not a baby at all anymore! And Joyce is also a writer and a poet whose work I very much enjoy. So Congratulations Joyce, and Thank you Gretchen!

Speaking of Gretchen, I haven't heard who the winner(s) of the yarn raffle are yet, but I will post that too when I find out!

There are still 2 raffles running - the Tastefully Simple Raffle and the Billy Jones' Book Collection raffle. Please scroll down to read more about those if you think you'd like to enter either one of them!Update!
Gretchen has drawn the names for the three winners of the yarn raffle but I can't possibly compete with her post, she's so good at suspense! So go see her post here and here to find out who won. And I want to say this, even though Gretchen told me to stop it. Thank you Gretchen, and thanks to all the people that entered her raffle! She raised $303 for the Heart Walk. She had it in her heart to make it to $300, and it happened! Thank you, all of you!

posted by Erin @ 12:42 AM 1 comments