Wednesday, January 13, 2010

Congenital Heart Defect Awareness Quilt Project

I don't remember how I first heard of the CHD Awareness Quilt Project. It just seemed like someone was always talking about their quilt block. I thought of submitting a request when Tommy was a baby, but he was a baby, he didn't have any particular interests or favorites yet. So I waited.

After he died, I looked them up to see what it was all about and what I needed to do to get Tommy a quilt block. I filled out the form with his likes and his personal information. There's no set time for a quilt block to be made. It just depends on when a volunteer is able to get it done.

I checked the page for a few weeks and realized it was going to be a very long time and moved on with life. I thought it might be a couple of years because of the long list of names. So MANY kids with heart defects and those were only the ones requesting a quilt block! Take a look at the honor roll on their page. It's stunning to see all of those names. Every single name is a child born with a CHD. Even if you don't read every name, scrolling through the sheer volume is an eye opener.

The morning after I posted my most recent blog entry, I lay down to take a nap as I do nearly every day. When I woke up, I checked my email as usual. I was not prepared to find the email telling me Tommy's quilt block was finished and a picture was included. When I saw it, I cried. I may never know who put together the most beautiful tribute to Tommy.

On the form, it asks for the child's favorites or likes, comments, etc to help make the block personal. Tommy was all about bubbles, Nemo and the color Red. I had no idea how those three things would pull together for a quilt block, but it did and it is amazing!

Everything is done by volunteers. If you would like to donate your talent, there is a link on their page with instructions on how to make the blocks as well as how to contact them. I have seen one quilt in person and it was breathtaking. Tommy's block is not yet on a quilt, but they will email me again when it is assigned to one. They will give me the quilt number and the position on the quilt. I hope to one day see it in person. The quilts travel all over the world and are shown at CHD events. If anyone ever spots his block on a quilt, I'd LOVE to hear about it!

Here is a picture of the beautiful block made for Tommy. I want to add one more thing. Since Tommy died, I have been looking for boy angels. Most of them have been cartoonish cherubs. When I see a picture of an angel, it's usually of a little girl in flowing robes and long blond hair. I wanted a picture of a boy angel! I've come across very few boy angels that looked angelic. If they weren't cherubs, they were just little boys with wings. Not what I was looking for.

I don't know where the volunteer found the applique of the angel, but that is what made me cry. Even down to the hair color, it's perfect!


Alicia said...

Wow, Rene! How awesome is that?! So beautiful and touching!

shashank said...

Here is a link to more information about the genetics of Congenital Heart Defects that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries