Wednesday, April 16, 2008
Hi,
My name is Dwight Miller and I'm working on a senior project with hopes to graduate from Pacific Union College in June. The topic of my project is infant bereavement photography (photographs that are taken of babies that are stillborn or born inviable with only a few hours to live). As part of my project, I'm trying to get into contact with parents who have lost their infant and who have the photographs that were taken. I think it is important for my project to find out, first hand from the parents, what the experience is like and what the photographs mean to them. I certainly don't want to pry or to go about this in a voyeuristic manner. I know that there are some people, however, that benefit from talking about their experience. If I could get into contact with parents who would be interested in talking to me, I am definitely interested in listening. I will go out of my way to be as respectful and sensitive as I possibly can be, since I know that this is an extremely sensitive topic.
Is there a way that I could get into contact with the sorts of parents I'm looking for, through this blog? If so, I can be contacted by email at wdmiller@puc.edu.
Thank you,
Dwight
posted by Erin @
9:46 PM
Wednesday, January 30, 2008
Yeah most of you don't know the story... back in the day I only blogged on my blogger blog. I had an extended group of friends though blogger. One of them was Gretchen. She was a friend of a friend, at first... She had a big family, and her baby girl was born just about 6 weeks after Nova. I found her blog and a picture of Lydia by accident, and it was true love at first sight. Lydia was such a gorgeous baby girl, the perfect future wife for Nova. I left a reply, jokingly saying that if I weren't so opposed to arranged marriages, I'd start making plans for their wedding. And a friendship was born. And because of the nature of our first meeting, she kept up with Nova's progress, and was heartbroken when he died.
And since his death she's been Team Nova's greatest supporter. But I've strayed totally off-topic.
I still ocassionally make my rounds through my blogger list, peek in on the friends I had there, despite the fact that I've really drifted away from the whole bunch. And tonight I made my rounds, reading blog after blog. And I hit Gretchen's blog. And her last post was about lydia. About Lydia's birthday actually. I was shocked to see that Lydia is 2 now. Two. As gorgeous as ever, with the sweetest little smile and blond curly hair and a nose that crinkles up when she smiles that smile that only a 2 year old can smile.
So Lydia is 2. That shouldn't be such a surprise. I knew in my head that she was 2. I mean, I knew Nova would have turned 2 in December, so obviously, Lydia would turn 2 in January. Right? So why am I so shocked and sad?
I guess seeing pictures of her at 2 brought it back that Nova SHOULD BE 2. Nova SHOULD BE smiling and crinkling his little nose up. Nova SHOULD have a head full of hair and an adorable little personality that shows up in pictures... It sort of reminded me. I'm not sad that Lydia is 2. I'm sad that Nova never will be.
posted by Erin @
6:05 PM
Tuesday, January 29, 2008
Thank you Krystal and Brayden!
posted by Erin @
9:35 PM
Sunday, January 20, 2008
I was recently approached by someone I know... she runs a local organization and is looking for charities to work with for their next fiscal year... she asked me if Team Nova would be interested and wanted some more information about what Team Nova is and what we do.
Team Nova has taken on a bit of a life of it's own, which is pretty encouraging. Truthfully, we're no different or better than any other group that signs up with the American Heart Association's Heart Walk. But it's so important to us that I guess I tend to talk it up as if it's more than just another team. He was my son after all, I guess it's easy for me to feel as though it's bigger and more important, ya know?
Then today, I received a comment on Nova's Heart, and a Friend Request here on Myspace from a mother who lost her son last month. Landyn lived 2 months, and passed away the day after Nova's birthday. His mother Megan has just begun the journey - Just 6 weeks in... I'm sending her my thoughts and warmest wishes.
Anyway, because of these things, I was reminded that the old page was down because the 2007 fundraising event was over. But they usually start it back up for the new year in January, so today I went to see if they were accepting team sign ups yet. They are, and I signed up - set the team goal at $10,000, and despite the craziness in my life at the moment, I'm setting off to solicit donations and support again.
$10,000 is a pretty lofty goal, but I honestly think we can do it, because I'm dedicated to it. Because it's important to us and more important still to parents who will continue to face the devastation of Congenital Heart Defects until we raise the funds and awareness to do the research needed to understand and prevent them.
Want to support Team Nova? We'd appreciate your support.
Click here to learn more and donate online, or print off a donation form and donate by mail!
posted by Erin @
12:28 AM
Monday, October 15, 2007
Nova's Heart has received an award!
What a wonderful surprise it was to receive the email! Thank you so much Kat for feeling we deserved it, and thanks too, to whoever nominated us!! I'm planning to do a bit of an overhaul on the blog this evening, and The award will most certainly become part of the 'renovative process!'
It's strangley fitting that today is the day we got this award too. I'm sure most of you know that today is Pregnancy and Infant Loss Awareness Day, and I've been using a PAIL layout on my (more frequently used)
MySpace Profile. I hope that it's a peaceful day for all of us who've lost a child, regardless of when, or how we lost them.
Now let's see, an update. It's been nearly a month since the Heart Walk was held here in Charlotte. Team Nova didn't do quite as well this year as last, monetarily speaking, but honestly, I believe we were more successful in the awareness department. There were no newspaper stories, and no onstage speech, but there were more people that got involved, joined the team, and were personally changed and made aware of the issues surrounding CHD. And sometimes, at least for a while, I think that's even more important than the money. All the money in the world won't create CHD research projects. Only awareness can prompt that change!
So our totals were:
Team Total Raised $2,875.00, with a total of 13 members. Unfortunately, the Kintera website was (and apparently still is) experiencing some technical difficulties and we know that this total is short by
at least $258. The AHA assures me that they're investigating the problem and that they'll find and apply the "lost" donations.
On the home front, things have been pretty stressful lately. I've started babysitting full time during the day, and working part time at night. I'm having some issues with my 16 year old son and his father/grandfather (who chose not to bother with him or his brother for the last 15 years...)which may prove to be the stressor that sends me right over the edge.
I found out that my father (whom I haven't seen since I was 8) died 2 years ago, and his oldest daughter has suddenly contacted us out of the blue. Not a bad thing, that sister concept, just an adjustment, and a situation that brings up some feelings that I thought I'd laid to rest years ago.
And despite all of the above, I've come to a point in my life where I'm feeling peaceful. That's a strange one because I haven't felt truly at peace since before Alexis died 6 years ago. Contentment is not a feeling to which I am accustomed. lol. But from this sense of contentment, it seems, comes poetry - I have not been able to write poetry since Nova died. I was afraid it went with him. But recently I've been writing quite a bit, and even won a poetry contest that came with a $50 prize!
posted by Erin @
1:20 PM
Saturday, September 22, 2007
Team Nova 2007 has had a slow start this year, but I'm hoping that's abut to change. I've finally had the meeting with the AHA Rep. Her name is Brenda (Laurie from last year is blissfully married and left the AHA to enjoy being a family :) Congrats Laurie! I'll miss you!)... and meeting with the Rep is always a bit of a kick in the pants. I can't believe how fast this year is flying by! We're halfway through June already! September 15th will be here before I know it!
So far, I've personally raised $650... a far cry from my $5000 goal! But
Ang has
joined Team Nova from Indianapolis and raised $300 (as well as
creating her own team, for which she's raised another $300! Amazing!)
And Gretchen, dealing with her own child's medical issues, is
running a yarn raffle again this year, and has raised
$1270 $1300 for Team Nova! Gretchen is such a wonderful woman... Not just because she's such a avid supporter of Team Nova, I mean, she was going to work out an agreement to arrange the marriage of her 7th child Lydia to my 7th child Nova... without ever even meeting me! (Cuz that's what's important ya know, knowing the other inlaws... LOL) I still maintain that they'd have been a beautiful couple!
Lydia on left, Nova on right
So, in all actuality, the running total for Team Nova 2007 is $2275... Just $2725 short of the goal! And only 3 months to make up the difference!
So I'm going locally, to businesses, to ask for donations, I'm planning a raffle of my own as well. And I'm hoping that, when the new school year begins, the childrens' schools will support us again the way Kassi's supported Team Nova 2006!
And yes, you guessed it, I'm going to start at it here as well. ;)
So, want to help me squelch this sinking feeling that I'll never meet my goal?
You can help by donating to
Team Nova 2007 via the American heart Association's Web Site. (Don't forget to check the
Matching Donations list to see if your company is one that matches charitable donations! If they are, your donation could be doubled by your employer! There are 185 pages of companies that match donations, so there's a good chance yours does!
Or you can snail mail a check, made out to The American Heart Association of Charlotte NC, and mail it to me at
Erin Monahan
2509 Old Charlotte Hwy
Monroe NC 28110
And I will forward it with my other cash donations to our AHA representative, to be added to our Team Nova donations amount.
Labels: American Heart Association, CHD, Heart Walk, Team Nova
posted by Erin @
12:40 AM
Tuesday, August 14, 2007
I know this is Nova's blog, but we're coming up on what would be Alexis' 6th birthday, and her death date shortly after, and I suppose my focus changes as we go...
I have not been very good at keeping up here at Nova's heart. Rarely a new blog post. I honestly don't know what to say anymore. I don't want to post over and over about the heart walk and seem obnoxious, and I really hate sounding like all I do is grieve...
I hope that all of your little ones are doing well. I think of them often, I make my rounds to read your posts about once a month... but mostly, I feel like I don't belong, like a reminder of what COULD happen... as parents of heart babies, I figure you all think of that more than you should ever have to, without me popping up.
Did I post bout the card from Nova's nurses? It was so beautiful to hear from them, to know they still think of us. I only wish I knew how to tell them just how much it means to us.
posted by Erin @
11:04 PM
Trish is going to raffle off a hand made afghan (that I will make after the raffle in colors of your choice) The money made will go to the AHA for team Nova. It will be one entry for $3.00 or 2 for $5.00 go to paypal.com and send the money to erin@poeticacceptance.com and be sure to put "afghan raffle" in the note space. The raffle will run until Sept 7th.
Here is the afghan design I will be using........
Congenital heart defects are the #1 birth defect. In the US alone, over 40,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 100 births.
(To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)
Nearly 4000 of the 40,000 born of those with a congenital heart defect will die. That makes Congenital Heart Defects the leading cause of defect related death in children.
Even though Congenital Heart Defects are the most common birth defect, they remain the most unheard of. Without raising awareness, the advances we're hoping for won't be available. Funding for childhood cancer research is five times higher than that of CHD research, although twice as many babies die from CHD's.
And yet, most people have never even heard of Congenital Heart Defects unless their child or another family member is diagnosed with it. Two of my children were diagnosed, and died, of CHD.
Donate to Team Nova (American Heart Association/Heart Walk 2007 - Charlotte NC) Today and help us help other parents. Or, if you can't donate, please repost this.
posted by Erin @
8:53 PM
Friday, July 06, 2007
posted by Erin @
7:21 PM
Sunday, July 01, 2007
Rosie O has a blog. I love her, and her blog, and her poetry, and her photos...
You can ask Rosie questions, and she comes through and answers selected ones. She gets so many in a day she can't answer them all. I asked her a question today. I've asked it before. I asked for her support in the Heart Walk. Who knows if she has even read mine. Seriously, the volume is staggering.
at 12:09, I asked Rosie question #1304:
even if you don't donate, please post this, so others can? https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=211173&supId=160575062
She's big on children's charities. But the AHA isn't really a children's charity now is it. I hope she posts it, or that I get some sort of response. I doubt I will.
Labels: American Heart Association, Charity, CHD, Congenital Heart Defects
posted by Erin @
12:17 PM
Name: