NC 14 News

CHERUBS & CDH Awareness on TV!

http://news14.com/content/local_news...e/Default.aspx

Video added. Different from what's on tv though.

Need some opinions please....

Some of you don't know - I hate being the center of attention, hate it, hate it, hate it. I much prefer working behind the scenes so getting in front of a camera isn't easy on me. I've done it a few times and done quite a bit of public speaking - all for CDH and CHERUBS. You can see in the video how uncomfortable I am! lol

I also have a pet peeve about CHERUBS and Shane... I don't like talking about how CHERUBS was started and I don't like having it said that CHERUBS was started in memory of Shane or because of Shane - because it wasn't. I still had Shane was CHERUBS was started, CHERUBS was named for Preston, Shane's PICU roomie who passed away from CDH. CHERUBS was started in honor and memory of ALL CDH babies so that no parent dealt with CDH alone or without information. I volunteer my time in memory of Shane but all of our volunteers do so in memory / honor of their cherubs.

This is a big pet peeve of mine because I've seen a lot of charities come and go over the years. There are great charities named after people who were started with the right motives - putting others first, which is what charity is about. The Susan G. Komen Foundation and Bethany's Jack Ryan Gilliam Foundation are perfect examples.

But there are other charities I've seen come and go that are strictly "MY loved one will be remembered!!!! This is about MY loved one and MY journey and MY anger or grief and that is first and foremost and I will prove that I am the BEST in making the most noise about MY loved one - helping others is secondary" So it really, really, really (seriously - really) leaves a bad taste in my mouth when interviews turn into Shane's story because CHERUBS is not about me or Shane and I don't ever wanted it perceived as it is. I don't feel a need to shout his story from the rooftops or even repeat it often. Maybe that's weird. Probably is. ;) I just am at peace with his life and his memory and don't need to focus so much on him in public. I'd rather focus on our whole CDH family and helping these babies.

Suggestions on how to avoid this happening with future interviews? I try to not talk about Shane but they keep ask questions. I know stories about "turning tragedy into triumph" are great and reporters love that - but we've got to get over that and onto the big story - CDH. I just don't know how.

Bummer, i could hear the video but not see any picture. Sounds like a great interview and i don't know if there is any way to stop media making the story about Shane. I do understand why you would want it focused on Cherubs and not your personal story though. If hearing your story brings people to the cherubs web site then anyone can see that you are doing this to help others and not just for yourself. Keep up the good work Dawn

Really, Tania? Maybe they were uploading it again. They redid the whole thing, did a whole little thing on TV with the events too. YEAH!!!!!! :D

Dawn-I completely hear where you are coming from with not wanting to make it about Shane-but they need a story, and it needs to be more personal than just some random defect. They want to know why there is this charity-and your story may just be one of many here-but since you are the spokesperson and the founder, your story will be heard. Don't try to avoid it-it makes it personal so that people can relate. It hits a nerve when people can put a face on the defect that is affecting babies. Words about CDH just don't have the same affect.

If you really want to make a point that it is for more than just Shane and your story, why don't you try to bring a collage of some of the CDH babies for the next TV interview. That way you can pick it up or point it out and show that these are the children you are working for-so many of them. These are the babies of CHERUBS....

Just my thoughts :)

Awesome idea, Corin!!!!!! :)

I just watched it and I think you did GREAT!!!
Shane is the reason you started CHERUBS. His legacy lives on through your work. I think you talking about him was beautiful.
I do like Corin's idea. Good one girl.

Did you get the video from my MIL?

I got it yesterday!!! :)

Did you watch it yet?
I have not and am just wondering if you have?
I still at my Mom's.
I am never going to be ready for leaving on Tuesday...........

Not yet, I'm trying to get baskets and lists done before a meeting in the morning and another in the afternoon. I'm hoping to be home earlier tomorrow to look at it and do other fun stuff... like clean and do laundry. lol. I can't wait to see it though! I have to figure out how to get it to work with my old laptop and a flatbed monitor so it can sit on the display table. Ohhh I just remembered, I have to do our display tomorrow too! Gonna be a loooooong week! :) But I can't wait to see you all!!!!!!

Wohooo
go Dawn :)
i know this week is going to be CRAZY !!

I couldn't watch the video :(

Dawn

I just watched the video and is was really good. You did a great job in increasing CDH awareness!

Thankyou :)

i wanna see it!
i will watch it when i go to the library tomorrow and get on something other than DIAL UP !

Dawn-
I just watched to video and I think you will love it.
It will be perfect for the table.
I have my laptop with me--do not mind if it needs to be used!!!
Let me know.
We are on the road and will be there tomorrow.

I think it was great. Corin has great ideas too, love the idea about a collage. It was hard to hear you in the video Dawn! Speak up :)

I've been hearing that my whole life, Amy! lol. What can I say? I'm just soft-spoken. :) I took a few college classes on Public Speaking, just for CHERUBS (I took a whole lot of classes for CHERUBS; Medical Terminology 1 , 2 and 3, most of my computer classes were taken initially for CHERUBS, Public Speaking, Professional Development, Psychology, etc - too bad they don't have a degree for running on-line medical support groups! lol). I barely passed that class, I couldn't speak loud enough! Craig says when I get upset I squeak like a mouse instead of screaming. Yeah, I'm pretty ferocious. LOL.

LOL :)

Dawn - I think you did a wonderful job! The interview was great and you are soooo attractive!!

I can only try to understand what you are saying about not wanting it to be just about Shane but I think people such as reporters really have no idea what groups such as CHERUBS mean until they have had a sick child or lost a child as so many of us have. I guess they try understand it as best they can and the 'easiest' way is to draw on your personal experience for the story. You did GREAT and it bought tears to my eyes seeing little Shane on video again! He is so beautiful!

Have a wonderful time this weekend and we can't wait to see video and photos!!!!

Wonderful video Dawn - and you are so softly spoken. I was talking to my SIL about it and said from watching that you would have no idea that such a quite gentle lady could achieve even half of what you have!

I understand what you mean about wanting interviews to be about CHERUBS and not Shane but the reality is that people are interested in other people and a reporter has to give their audience what they want. As long as you can get CHERUBS into any interviews let it be about Shane - it's a means to an end I guess. You have to think about it from another perspective. When I found CHERUBS the thing that made me want to join was not all the wonderful research and information that was available - it was that there were other real people who knew what I was going through. It was also reading your story about how you started - two members, a type writer, $100 (I think?) and your kitchen table. It was reading about how you named it for Preston. It was all that personal stuff that made me want to join.

I like Corin's suggestion also but to get the word out there, we all have to offer up our personal stories. I think that is just the way it is.

And if anyone ever thought you were all about yourself......well, they have NO idea. The amount of hours you put in, the tears, the stress, the heartache and the headaches. We know the situation so never worry about that!

Hope you all have the BEST time this weekend and I can't wait to hear all about it and see all the photos. Fingers crossed some of us Aussies can be there next year???!!!