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

Thursday, August 31, 2006

Learning by Repetition

There have never been
enough balloons to do you justice.
Tuesday was no exception.

The rain left 12 Mylar hearts,
in screaming scarlet,
unpurchased.

And then the sun came out.
It always does, doesn't it?
Even at your funeral.

When reverend Smith stopped eulogizing,
the rain stopped, and made steam
from damp lashes and soaked shirts.

That day though, later,
there were balloons.

They rose till they nearly disappeared,
became periods in distant eyes, because
there wasn't strength or conviction enough
for exclamation marks.

No, I was weak and young and quiet.
Now I've learned as all children learn best.
I've been taught the lesson of repetition.

I have stacked my periods one atop the other,
one longer, standing taller, but both
equally lost to the expanse of empty arms
and blue skies and hopelessness.

I know now that you are gone.

Despite the release,
regardless of punctuation,
all that is left are two short stories
and the blank page.

I will write your names,
over and over again, scatter them
to the winds of Autumn, and pray that,
like November leaf litter,
they become something fertile
and feed the springtime blooms
to become the rose corsage
pinned close to the heart
of another mother.

posted by Erin @ 8:52 PM 1 comments

Sunday, August 27, 2006

Dear Nova~
Today Daddy and I were talking about going to the park. You see, they have a track there, and you made us both think a lot more about taking care of our health, so we're going to start running every morning. We haven't been to that park in a very long time. I started thinking about how long it had been and I realized that the last time we were there Terra was about the age you'd be now. I remember pushing her around in the stroller, and sliding her chubby little legs into the leg holes of the baby swing. I was sad that we never took you to the park. You'd have loved it - you always loved your little swing, and you were always so thrilled to be outside. Like you were looking at everything, soaking it all in before you had to go. How I wish you didn't have to go. There's so much of the world that you never saw, that I never showed you, and so much of the world that I never saw before that you've shown me.

I don't remember the sound of your cry anymore, but I remember how you'd stop when I picked you up, and the way you'd nuzzle into my neck. I remember the sparkle in your eye, and the way I always felt like it was just for me. God how I loved every minute you were mine. I miss you so much, so so much.

Sometimes, at night, I go outside and look up at the stars, and I talk to you, inside my head, you know? And I tell you how I love you and how much I miss you, but I wonder if you can really hear me. You see, I don't believe you became an angel the day you died, I believe you were an angel when you were a born, an angel I had the privilege to care for, for far too short a time.

And I won't ask you to look over me, or to look out for me, because that's not the way it's supposed to work. I was supposed to protect you, not vice versa. And I was supposed to teach you, but that's not how it worked out at all. I learned so much from you Nova, and I wonder just how you did it, without ever saying a word - and even now, after you've gone, through the pain and emptiness, I'm still learning.

You were not a child, you were a phenomenon, so powerful and wise. And I know that if you'd been born healthy, if you were still alive, the years would have diluted that strength and I don't want to unlearn your lessons, but oh how I want you back.

I love you baby. I love you and I miss you, and I always will.
Love always
Mommy

posted by Erin @ 11:45 PM 4 comments

I just received another email from a blogger who is near and dear to me. Billy the Blogging Poet lives just a matter of hours away, and works tirelessly to create a network of poetry bloggers. He's proposed another raffle idea to benefit the American Heart Association via Team Nova. Here's what says:

Howdy Miss Erin,
I was just over at your site ... when your latest post sparked an idea. I can donate 1 copy each of CARROT ON A STICK, COLD DRY BISCUITS, and my children's book, THE ADVENTURES OF ARNIE AND JAKE, Two Little Ants In A Big Ant Army. Signed of course.

CARROT ON A STICK and COLD DRY BISCUITS are at Amazon and Arnie and Jake are at http://www.arnieandjake.com

Arnie and Jake are not currently in print but I've a few remaining copies. The book remains rare and should the fates allow could someday be a collector's item.

You can raffle them off together or seperate (your call) and I'll personalize and mail them to the winner(s) with any inscription they like.

That's $62.23 worth of books, signed by the author, and shipped, postage free. Again, use the donation button to the right, add a note that this is for the book raffle, and for every dollar you donate, your name goes into the pot one time. This will be another to go a bit longer than the rest, I'll run it up to the 10th so that I can post the total to the Donations via the web at the very last minute on the 11th.

Thanks again Billy!

posted by Erin @ 9:15 PM 0 comments

I received an email this morning from Melissa who has been reading my main blog pretty much from day one. (It's been nearly 2 years for goodness sakes, I can't believe it!) And she's decided that she wants to get involved in my fundraising in a more direct way than the donation she made back in June (I remember because it was my step-daughter's birthday.)

so here's her idea.

I know time is winding down for the walk, and I wanted to see if if there was one last thing I could do to help.

I'm a Tastefully Simple Independent Consultant. Basically, what this adds up to, is that I do in-home test-testing party of Tastefully Simple foods and food products. The stuff is delicious and ranges from spices, dip mixes, desserts, beer bread, soups, and more. You can check out www.tastefullysimple.com for more information.

While I'm based in Texas, I think we could still work out a gift certificate winner.

This raffle is for a $15 gift certificate, good for Tastefully Simple gourmet foods from Melissa Gibson, Tastefully Simple Independent Consultant. After receiving notice, the winner will receive an order form and catalog in the mail. Simple fill out your order (and feel free to contact Melissa with any questions), subtract your $15 raffle gift certifcate, enclose a check (made out to Melissa Gibson) if order is greater than $15, and mail back in the self-addressed-stamped envelope supplied. Tastefully Simple offers a large variety of gift packs, and it's never too early to start thinking about the holidays! You can check out Tastefully Simple goods at www.tastefullysimple.com.

Basically, this is the same concept as the other raffles. You use the paypal button in the sidebar, making whatever sized donation you choose. For every dollar you donate, your name goes in the pot once. This one I'm going to extend right up to the last minute, I'm going to run this until 9/10 and really cut it close to the 9/11 deadline for having donations turned in. If there wouldn't be the appearance of impropriety, I'd join this one myself. This stuff looks good! I mean, the triple fudge brownie mix ... YUM!

posted by Erin @ 12:58 PM 0 comments

Friday, August 25, 2006

As of the 16th - the day of the heart walk - Nova will be gone 5 months 12 days. Alexis will be gone 5 years 17 days. Weirdness in numbers, but then I see stuff in stuff where there really probably isn't any stuff to be seen at all. I mean, who cares about the double 5's, who cares that the difference between 12 and 17 is 5. There's no significance in the fact that Alexis lived 12 days, or that she was born on the 17th... right? I'm just being weird. Sort of like Nova and the 4's. He was my 4th son, lived 4 months and 4 days and died in the 4th month, he had 4 catheter procedures, and died 23 minutes after 4 o'clock, during our 4th visit to CVRU that day. None of it means a thing, right? Just me being weird.

So there are 21 days and $804 to go. Time is running out, and I'm beginning to prepare myself for not making it. It isn't like I'll be penalized or anything but I really want to hit that $3000 mark!

I'll come damn close, based on money that's pending and money that's coming and money that's promised. We'll see how close, I might still make it. Not giving up yet.

I've gotten quite a lot of new support recently, as far as people linking to me and spreading Nova's story. That's helped a little to get me out of the slump I've been in emotionally. I'm not feeling so great the last few weeks. It's a daily roller coaster, and I never really know what mood I'm going to be in from minute to minute. Plus there are frustrations from outside sources that are really effing with my head.

So I'm concentrating as much as I can on the Heart Walk and all the things I've got going, like the Photography Gift Certificate Raffle. That total so far is $15.00 (c'mon Charlotteans! Her work is awesome! And just ONE dollar gives you a chance to win $100 worth of photography services!)
Then there's

Ryan's Blanket, which has a total so far of $10.00. Not much action on that either. At this point, Gretchen is the guaranteed winner there.

Speaking of Gretchen, she's still running her awesome yarn raffle.
The total so far on that is $130! So, with those 3 totals that's another $155 to go toward that $804 I'm lacking. By the way, all of those raffles end on the 1st, so if you want to enter the drawings for the yarn, the blanket or the gift certificate, there's only one week left to enter. The rest I'll just have to get by pimping out the link to my page(http://heartwalk.kintera.org/charlottenc/novasheart), and by hoping that I get some donation traffic through all the new links that have been put up on various blogs.

So, anyway, there's the rundown, and I'm just run down, so I'm going to go make everyone go to bed, even if I have to knock them out, because I need some quiet.

posted by Erin @ 11:32 PM 1 comments

Thursday, August 24, 2006

There has been a lot of discussion today on one of my grief support groups about what's "normal" behavior and what emotions are "normal" early in the grieving process. Someone wanted to know our opinion of using medication to smooth out the edges while the pain is so sharp. I told her that she knew herself better than we did, that if she felt she needed meds, then she should be willing to consider it as an option. But all of her 'symptoms' felt like they were exactly what a woman should be dealing with just a couple months after losing a child. It didn't seem to me that she needed meds, but that she needed time and support, and understanding.

It has had me thinking all day though, about whether I should consider professional help, or if I should have after losing Alexis. These are my thoughts:

Crying has become a daily part of my life. It started 5 years ago when I lost my daughter Alexis. Every crazy thing, from commercials, to TV shows to other people's babies, all made me hysterical. Even my own kids. When Bren, then 4, rode his bicycle without training wheels the first time, all I could think about was how Alexis would never learn to ride a bike. Right after her death I had a preacher show up at my door, offering to pray for me. I chased him across my yard - crying like a loon, screaming, "300 people prayed every day for my daughter, and what did it get her!? Don't do me any damn favors!" I went back and forth between a bone-deep sadness to anger like you've never seen.

When I found out I was pregnant again 2 years later I started to feel better, cry less. It was a hectic time in my life, and I was distracted with survival, and with the promise of this new child I was carrying. That lasted until Terra was born and looked EXACTLY like Alexis. So much so that we often called her Alexis by mistake when we first brought her home. Again, I cried, all the time. I thought I was losing my mind. I couldn't look at her without feeling like the whole world had turned inside out. I went back to work when she was 3 weeks old, because I couldn't stand the things I was thinking and feeling. I would have to remind myself that she WASN'T Alexis. I'd sneak into her room at night and make sure she was warm and pink and breathing. I gave her everything she ever wanted, for fear I'd lose her too. I held her constantly, and even now, at 3 yrs old, she's spoiled and generally gets her way. We call it "Post-Alexis Syndrome." Those first few months are such a jumble of emotions that, looking back, I wonder why I wasn't admitted to the psychiatric ward.

I was better and rarely crying by the time I found out I was pregnant with Nova - until we found out that he had what we thought at the time was exactly what Alexis had (ToF.) Then it all came back again, plus the fear and tears for Nova. I haven't stopped crying, on a daily basis, since he was born in December, and of course, more so since he died in April. Now, I can't even stand to look at his pictures, even the ones of him on this blog. I just sort of look past them, around them, but not at them. It's too painful. I never got to hear him laugh, and I've forgotten the sound of his cry, already. I sometimes wonder if he wasn't some sweet dream that turned into a nightmare.

2 of my best friends in the world have children almost exactly Nova's age - the one that lives locally is kind enough not to bring her son when she visits me. I usually dread seeing other people with babies, most of the time I can't look at kids the same ages as Alexis or Nova, without dying a little inside. I hardly ever go out unless I HAVE to, and then I dread it. I haven't even done my own grocery shopping in months. When I do go out, I come home so emotionally drained from "being ok" for all those strangers who don't know and don't understand when I fall apart. I spend a lot of my time pretending that I'm ok, and expend a lot of energy trying to keep myself together. I can do it, if I have to, outside the house, and here online - but my laundry is always piled up, the house is a wreck, I have to force myself to do the simplest things (like showering and remembering to make dinner.)

And then other times I feel SO ok, so motivated to do 1000 things all at once, fundraising, and selling sponsor spots on the Team tshirts, joining the PTO, coordinating fundraising events with my kids' schools, newspaper stories, Awareness stuff, and sometimes, crazy cleaning jags. I cry every day, but I also laugh, a lot. I smile, and I love my kids in ways I never thought of before. The important thing is this - I give myself permission to do all of the above, and not feel guilty about whatever it is I'm feeling.

Should I have gone to a therapist after Alexis? Probably. Would meds have helped me? I have no idea. But I never felt like I wanted to go on meds just because other people couldn't understand how broken I was, and still am. I am afraid that meds would make me numb. Alexis and Nova were my children, and they deserve to be mourned, I deserve the chance to feel my grief, to miss my babies. I don't want to cover my pain in a medicated fog. And I don't want to miss out on any tidbit of happiness that might get lost in that fog as well. And if I was foggy, would I have the motivation to do all the good things I'm doing? I don't know, but I'm afraid I wouldn't.

I know that the woman I was 5 years ago is gone. I also know that the woman I had become as of one year ago is gone. I have been torn down and remade and torn down, and I'm trying to rebuild myself again. Trying to build positive things to lean against on the bad days. Trying to make a difference in my children's names so other people benefit from their lives, and from my loss, and feeling the pain is part of that process. It sucks, it's hard, but I really believe it's how it has to be done, at least, for me.

posted by Erin @ 1:04 AM 1 comments

Saturday, August 19, 2006

http://www.beepcentral.com/story.aspx?story=6275

http://www.pittsburghlive.com/x/pittsburghtrib/s_465763.html

More CHD deaths, and in my mind, more reasons for awareness and funding for the research of CHDs

posted by Erin @ 2:12 PM 1 comments

Thursday, August 17, 2006

Team Nova has its first sponsor! HS Her Story Photography and Art has donated a gift certificate to be raffled off, (as with the Yarn Raffle and Ryan's Blanket) and all proceeds will be applied to the Team Nova shirts.

HS Her Story Photography & Art
The certificate will entitle the winner to a free session fee with Her Story Photography & Art. ($100.00 value)

Session Fee will be good for either Studio or Location.

Kelly Story at
28504 NC 73,
Albemarle, NC 28001
704-244-1505 or 704-986-2460
Certificate good until 12/31/06

If you want to put your name in the raffle, use the paypal button below, and for every dollar you donate, your name goes into the pot once. On Spetember 1st, I'll draw a name and send the certificate to the winner. All photographs in this post are copyrighted to HS Studios. Do not copy without express permission from the copyright owner.

posted by Erin @ 10:16 PM 0 comments

So it's been rough lately, and that's an understatement. Today though, has been surprisingly OK, considering that Alexis would have been 5 today. OK, not great, but doable.

There is a woman named Kim who has a 13 yr old son who was born with a CHD who joined Team Nova, she is the one who contacted The Charlotte Observer about doing the story that's presently being done. She emailed me yesterday asking me to call her, so I did, and it looks like she's making some huge strides as far as sponsorship goes. She's a go-getter! I'll know more next week. Keep your fingers crossed for me/her!?
She also told me about a story in the paper yesterday (or the day before?) about The Sanger Clinic. Dr. Stern and other doctors and staff volunteered their time and energy to screen a group of high school athletes to make sure there were no undetected heart problems with these kids. You know, I've posted several stories and links about kids that have died recently of undetected CHD. These docs volunteered to ensure that all these kids were heart healthy - for free. That's the Sanger Clinic docs for you. Awesome.
So I went to read the story at Charlotte.com, and saw that I could run an ad for $9.95, with a picture, for 14 days, with the option of two free renewals. Yup, I'm so there. However, there was a 500 character limit. Pruning my blurb to 500 characters was so hard. I hope there's a lot of response from it. If there's NO response, I hope that it at least gets read a lot, for awareness' sake.
The phone rang this morning. It was the media director from the AHA. It looks like our story will be part of the motivational speech given just before the Heartwalk starts on the 16th. We'll even get to be on stage in front of the masses. How's that for awareness raising? God help them if they let me near the mic, my brain is writing a speech in the background already.
She also said that she expects to hear back from the other media outlets sometime next week. Awareness, awareness, awareness! Come onnnnnn awareness! I'll be thrilled to be the spokesperson for CHD awareness for any of them that are willing to listen!
Also, I got to spend nearly an hour doing a phone interview for the Observer story, which means that on Alexis' birthday, I had the opportunity to talk quite a bit about Alexis. This is a good thing. Hard, emotional, and good.

And for future reference, in the event that someone close to you loses someone they love, particularly a child, please understand that they want to talk about that person, and don't make it a taboo subject. I spent many years feeling like I wasn't supposed to talk about Alexis, and this year I've been able to talk so freely about her to so many people, and I can't tell you how wonderful it feels to talk about my baby girl.

posted by Erin @ 2:43 PM 1 comments

Tuesday, August 15, 2006

When Nova was born, the only vehicle we owned was a Ford F-250. Scott's work truck. Not family friendly, or the ideal vehicle for making a lot of trips to doctors with an infant. So, when our tax refund came in January/February, we bought a used conversion van, for Nova, for his appointments, for his stay in the hospital, and the trips we knew we'd be making back and forth.

The van, like I said, was used, and the last couple of months, it's really been acting up, so we haven't used it much, because we can't afford to repair it. Apparently, it's the computer, and that's very expensive. It will run, but it will just turn off -pft- and won't start back up until it's damn well ready. Scott has fiddled enough with it to have learned the trick to making it start, but we just haven't used it much for fear that one day it won't start back up.

Tonight, we were going to my sister's house to drop off the crib, she'll be using it at her house for the times she's babysitting her grandson, my niece's baby. We took the crib down a good while back, and piled it into the van, and it's been waiting there for her to be ready for us to bring it over, so we decided to brave using the van. Anyway, Scott went out and put Terra's car seat in the van while I got everyone ready to go, and we went out to pile in.

First thing I realize: I've barely been in this van in months. I've barely been in the van that we bought for Nova since Nova died.
Second thing: Terra's seat is in the captain's chair behind Scott. The spot Nova always rode in. We are in Nova's van, Terra is in Nova's seat, and Nova is gone. We're off to a great start, and I'm not even in the van yet. By the time we got to the end of the driveway I was fighting tears.
Third thing: I realize that we were about to make a 13 mile trip - the exact same 13 miles that comprises the first half of the trip that we covered every day we went to the hospital.
At that point, it was pretty much over, I lost it. On the inside anyway. Wouldn't want to fall apart and get the kids all freaked out and shit, right?

My only outward admission of the horrible thought processes that were running wild in my mind was to tell Scott that I hated the van.

I.Hate.This.Van.
This is the van we drove to deliver Nova to the place where he died. We bought it just for him and he's gone and
I.never.want.to.be.in.it.again.
We thought we were going to have to fix it, at a rather large expense. It looks like we'll be selling it instead. Anyone want a 2001(?) Dodge Ram Conversion Van with a bum computer?

So.

We were given a fish tank. We were going out by my sister's house to pick it up, which is why we were dropping off the crib. Gas is too damned expensive to drive any more than absolutely necessary. The tank was supposed to come with a fish. It died last night, before we got it. Dropping off a crib that belonged to my dead son, only to make room in the van for a tank that belonged to a now deceased fish.

So.

Today was Kassi's 12th birthday. Poor girl doesn't get to have a very good birthday. See, she was born 8 years and 2 days before her sister Alexis. She believed that her 8th birthday present was the baby sister, Alexis, who was born 2 days later. She was so thrilled. She barely met Alexis, the kids were only allowed to see her once, and only for a few minutes. So, for her 8th birthday, Kassi got a baby sister, and 12 days later she lost her, before ever getting to know her. It is a memory that will forever taint her birthday. I have a hard time getting excited about her birthday. It feels wrong to celebrate anything at all this month. Kassi always remembers Alexis on her birthday - it will always be entangled with a sense of loss for her, and for the rest of us.

We didn't have a birthday party for Kassi today, because her best friend was out of town (for her grandfather's funeral) so it will be this weekend, the 19th. 2 days after Alexis' 5th birthday. 10 days before her death date. Ooh yeah, par-tee time.

Yes, thanks for asking, I am having a crappy day, and perfectly fine with the fact that I've given myself permission to admit it. To not fight it. To damn well be honest with myself, and feel it.

Will you still respect me in the morning?

addendum: The transmission went out this morning. We had to have it towed back to the damned house. There it is.

posted by Erin @ 11:43 PM 1 comments

Tuesday, August 08, 2006

Long Rambling Randomness

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

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

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

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

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

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

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

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

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

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

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

posted by Erin @ 9:08 PM 0 comments

I know that I did it, but I don't remember how.

Grief is blinding. You're so lost in it at the time, you don't really see how you're getting through it. You're too consumed with the day, or the hour, or the moment sometimes, that you don't have the energy to do anything beyond the surviving. So when you get through it, you look back and realize that some undetermined amount of time and life has just passed, and you don't really remember most of it.

I was sitting out on the porch tonight and thinking aout Nova and how desperately I miss him, and I thought, "How am I going to get through this without losing my mind?" But of course, I also know that I've already made it through it once. I survived losing Alexis, and I had even reached a point that I didn't obsess about her, or cry all the time anymore.

Surviving the loss of our son should be... not easier but, I don't know, I feel like I should be doing better than I am because I should already know how to do all of this. But the thing is, I know that I did it, but I don't remember how.

posted by Erin @ 2:37 AM 1 comments

CHD Calendar

Thank you Michael for forwarding this to me...

Photo Deadline Extended
One More Week

Each year we ask all children and adults born with a heart defect to submit their photo for our awareness calendar. This year is no different.

Because we want to include as many people born with a CHD as possible, you have an additional week to get your photos submitted for the
2007 Saving Little Hearts Calendar.

If you have not already submitted your photo please follow the instructions below.

1. Choose your favorite photo of your special CHD person (child or adult)

2. Either email the photo (high quality scan please) or mail it to Saving Little Hearts before August 23, 2006.

3. Include the person's name, birth date, death date (if applicable) and heart defect(s).

Sincerely,

Karin Coulter
Saving Little Hearts
karin@savinglittlehearts.com
- 865-748-4605 -
http://www.savinglittlehearts.com

posted by Erin @ 1:23 AM 0 comments

Monday, August 07, 2006

Ryan's Blanket

A few weeks before I had Nova, my best friend Trish gave birth to her son Ryan.

Trish and I have known each other since we were 11. I'm not doing math for yas, but that was 2 decades (plus some) ago. Our birthdays are just days apart and so for about a week I get to give her a hard time about being older than I am. Tricia is the one person in my real life who isn't family that is family. We consider each other sisters, our kids are cousins, bloodlines be damned.

Trish lost a child 16 years ago to SIDS, and her youngest daughter has special needs due to cerebral palsy. Without going in to too much detail (because frankly, that's her story to tell and she does a much finer job than I) I will just say that Trish is one of those mothers, who, despite the very real difficulties in her own life, never fails to reach out to others, is always a compassionate ear, and a generous soul. Since her daughter's diagnosis with CP, her life has changed dramatically, and yet she offers her name, number and hand to every other parent she sees or hears of who has a child with special needs. I could not possibly ask for a more wonderful best friend.

When Nova died, her son was having some feeding/weight gain issues, and on one of her visits to his pediatrician, the doctor told her that he heard a heart murmur. Needless to say, with Nova's ordeal so fresh in her heart, she panicked and was extremely concerned. As you all know, feeding issues are common in heart babies, and she feared that her son had an undiagnosed CHD. She promptly arranged for her son to see a pediatric cardiologist for an echo. Thankfully, it was a false alarm, his heart is fine, and his feeding issues have resolved themselves since then.

Trish just had surgery a few weeks ago too, for a hernia, and has been off her feet pretty much ever since. She has spent those weeks knitting baby hats for the heart babies in CVRU at CMC. She's that kind of person. Want more proof? Yesterday, she was reading my blog(s) and saw Gretchen's yarn raffle for Team Nova, and proceeded to brain storm for herself how she could do something similar.

She had no blog (she does now though! YAY!) and she has no Paypal account, but knew I do, and so, she's come up with this:

When Ryan went in for his Echo, he was given this quilt. It's 43"x35" and as you can see in the pictures, it's pretty darn adorable. Hand made by women who donate these quilts to the hospitals for children who go in for heart procedures of any kind. The group is called the Charlotte Quilter's Guild and bears their label, as well as one that says Made by Loving Hands (?) Quilters. (That tag is wash-worn and I'm not sure "hands" is right.) She thought this quilt would be the perfect thing for the raffle idea because it is actually intended to be given to heart babies, and because she was blessed with good news about Ryan's heart.

(Click on the pictures for full sized view)

So I'm going to do this just like Gretchen is doing her yarn raffle. If you'd like to own this handmade quilt, and support Team Nova's efforts in the Heart Walk, here's what you do: Use the Paypal button and donate whatever amount you'd like. For every dollar you donate, your name goes into the pot one time. (ie: a $10 donation puts your name in 10 times.) I'll keep a running tally in the sidebar with the name and amount of each donor/donation. On September 1st, I'll put the names into a hat, and draw one out. The name I draw will then be announced and will receive this blanket via our wonderful postal service, and the total amount of the pot will be donated in Ryan's name to the American Heart Association Heart Walk.

posted by Erin @ 8:05 PM 2 comments

Saturday, August 05, 2006

glowangels again

This is a photocuddler. It's like a stuffed animal, with a picture frame face.

After Alexis died my mother got one similar to this (but it's a bunny) and had Alexis' picture put in it, and had it set under a glass dome. It holds a little tiny panda bear, it's really cute, and meant a lot to me that she had it made up like that.

When I started Poetic Acceptance, because I had one, I decided this was definitely something I wanted to carry in the 'gift shop' and I have about 100 of them (all angels) that never ever sell. Like, never. No matter what I've tried I get NO traffic to that site.

When Nova went into the hospital, I took one of them (another bunny, the boy version) and put Nova's picture in it, and it stayed with him the whole time he was in the hospital. Now I have a matched set on top of my entertainment unit in the living room, along with all the other stuff, pictures and things, from both of them. I also passed a couple of them out to other parents that had children in the hospital while Nova was there.

So, here's my idea, since that site is a miserable failure, and I have all of these angels that were supposed to be sold for charity, I'm going to sell them for $5.00 (they're usually about $10.) Half of that will go to the Heart Walk, and the other half will go to another friend of mine who is doing big stuff in her area as far as CHD awareness and stuff.

She's started a program for parents that find out that their child has a CHD, like a workshop, where they can ask questions and learn about their child's defect. They have speakers come in and they want to offer each parent a copy of a book that has been considered the leading source of information for parents whose child has a congenital heart defect.

It's an awesome program - but she's not rich, and there's an initial outlay for the books and supplies and such that she needs. I want to help her out if I can. My Paypal accout ($5.54! woo hoo!!) is already promised to her for this, but she needs $200 bucks like now. I know I've tapped you guys out and here I am asking for more but this chick is doing all the things that I want to be able to do here, and I know what kind of support I'd need if I were doing what she's doing. So c'mon help a total stranger out eh?

posted by Erin @ 9:29 PM 1 comments

Friday, August 04, 2006

I've got a joiner!

Team Nova has a new member!

One of the mothers that I've been in contact with (the one who referred me to the paper actually) about volunteering to run the CHD/Little Hearts tent at the Heart Walk has just joined Team Nova! How awesome is that!? She and her son (a 13 year old CHD survivor) are going to start fundraising in advance of the Walk, and be there at the tent with me!

I'm really hoping for a successful day at the Walk, not just the walking (hey, I can walk 3 miles! I tried it! several times, and survived every time!) but with the tent, and raising awareness, and with getting a good sized group of families that will be interested in joining Little Hearts and maybe even offering to help with that process.

I am so psyched today. I can not possibly use enough (obnoxiously overused) exclamation marks to emphasize how excited I am! (!!!!!!!!!!!)

posted by Erin @ 1:47 PM 0 comments

Thursday, August 03, 2006

Breathing August

I've never been one to do a lot of partying on New Years Eve anyway, never really fell into the concept of resolutions or the idea that January 1st had any great significance. But you see, there's a funny thing that happens when you lose a child. Your calendar changes.

The year no longer ends on December 31st or begins on January 1st. I've spent nearly 5 years judging the passage of time by Alexis' birth and death, with August being the month that signals the change of the year. I'm a matter of weeks from the start of another year since her passing, and I find myself obsessing about it, about how she'd have started kindergarten this year. I also find myself wondering how to track my years now, now that I've had and lost Nova too. Two birthdays to mourn through, 2 death dates ("angel-versaries") to memorialize. I have a feeling that it will be different with Nova's dates than it has ever been with Alexis' though I can't quite explain why.

I suppose that's a bridge to cross when the waters rise. For now, I'm posting a poem I've been working on about Alexis. I'm sure Nova wouldn't mind sharing his (blog)space with his sister's memory for tonight.

powered by ODEO

Breathing August

Summer stole my breath,
poured it into a mug
and handed it back like coffee,
steaming - a fog falling
on a world turned upside down.

It is always August,
humid and bloated, grey-blue
coming and going and coming again.

It's wilted breezes, untied ribbons
tree bound kite strings
and long nights with nothing to do
but fight with trying to remember
and trying not to forget.

But most of all it's breathing,
the swirl of cream in my cup
and missing you.

posted by Erin @ 2:00 AM 1 comments

Wednesday, August 02, 2006

Thank you Nova

There are people who can (or maybe they must) ignore it, avoid the pain and sorrow and tragedy in the world. You know the type, they turn their heads and avert their eyes. Perhaps it's selfishness, perhaps it's self-preservation, it doesn't really matter. The point is that they manage to insulate themselves, one way or another, from the negative emotional bits of human existence. I am not one of those people, even when I try.

But I used to be.

And as much as I can understand the need to bury ones face in one's hands when bad things are happening, I also understand the end result of that, which is self pity. Self pity because you can ignore the pain of other people, but when you choose not to acknowledge their pain, you also tend to miss seeing the good, and all that is left to see at all is your own pain. You begin to dwell on it. Then, having not seen anyone else's pain for so long, you begin to believe that you're the only one hurting, and you fold in on yourself, holding your own pain dear, like a prized possession.

Like I did when I lost Alexis.

But today, I was out doing mundane things, making purchases I could ill afford, and the sun was sweltering, heat index 104, feeling miserable, cruising across the expanse of asphalt that is the mall parking lot. And there in the median, swaying in the waves of heat as they rose from the ground, were the most beautiful plants with vivid purple foliage, and beside them were variegated purple and green plants with feathery 'appendages' (for lack of a better word) that seemed to float above the plant itself, and they were just gorgeous.

I know that a year ago I'd have never even seen them, because I'd chosen, years before, to close my eyes to the world around me and steep in my grief. But Nova has taught me better, opened my eyes to the beautiful contrasts in a world full of pain and happiness. For that, I am so grateful.

Of course it hurts, it makes me do things like continually visit the blogs and photographs from the Middle East. They leave a metallic aftertaste - all those stories and pictures, all those injured and dead and terrified people. They sit like sulfur in my chest.

But it is a lesson that has enabled me to do, to even attempt, so much in the CHD community and with the Heart Walk. Seems he was a much wiser person than I, an old soul with a lesson to teach and a penchant for teaching (and touching) so, thank you Nova. I miss you terribly, and I love you - always.

posted by Erin @ 7:50 PM 2 comments