Thursday, August 17, 2006


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, 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.


  1. There is so much good in this post. A lot going on, and while I know it's all overshadowed by loss and grief, I can't help but be proud of you for all that you're doing to help other babies with CHDs. You're incredible, and so are your children.

    And I don't think that our departed loved ones should EVER be a taboo subject. Sure, it can be difficult sometimes because there never seem to be the right words to say. But it's not about what you can say to the person who has experienced the loss, is it? It's about the fact that you're able to listen.

    So speak on, Erin. We're listening.

  2. Just popping in to say I love you!!

  3. Anytime you need to talk I'm here. Heaven might be their playground now but we are still their mother.

  4. Ang~
    I regret, so deeply, that I was not online when I was going through the grief of losing Alexis. I have SO many wonderful friends so willing to listen, and I didn't have that with Alexis. Thank goodness I do now though, because I'd have lost my mind without some way to cope, to talk and decompress and a way to do GOOD in response to Nova's death!

    *smooooch* I love you too! Hope you're doing well. I miss you!

    Rose, thank you so much. I think it's so important to have someone to talk to, especially someone who has lost a child, but I really think that losing a child to a CHD is a unique experience in itself, and it helps to know there are others who have been through it to talk to. Thank you for stopping in, for leaving comments and sharing Katie's story with me!