Thursday, February 4, 2010

Chronically Cool Families...

Picnik collage


We are excited to officially announce the start of Chronically Cool Families -- a parent to parent support group for families like ours who are struggling through everyday life raising a child with a chronic illness or disability.  Adam and I know first hand the struggle that comes along with having a chronically ill child. There are so many families out there who often time get isolated simply because no one can understand the challenges they face on a daily basis.

Our goal is that no family walks this path alone.  A great strength to Adam and I was found in other families -- many who read this blog, who also face similar difficulties.  Even though every story is different it's just nice to know that another family could understand, at least a portion, of what we were going through.  This group in no way will change the sick child's health but it can give hope -- hope that life is possible despite a disability -- that joy can be found even in the most stressful and chaotic moments.

Another exciting part of this group is that we will also be offering a sibling support group which will include both the effected child and his or her siblings.  When Gavin was here my one wishes as a mother is that my daughter, Madison could understand that there are lots of other children who are just like her -- having a sibling with an illness or disability.  The group will be simply a time for kids to be kids -- both with illness/disability and without.  

Group starts on March 25th @ 7pm at the Alfred I. duPont Hospital for Children.  If you are interested please contact myself or Jennifer Fenstermacher who is a social worker at duPont.

CCF flyer

18 comments:

kate. said...

I am insanely proud of you. You amaze me in every way. I'm speechless. Congratulations. xoxoxo

Anonymous said...

You are so inspiring. You are always looking for ways to help others. I hope you have great success with your groups.
Tina

C's Mommy said...

I see big billboards and meetings starting all over- because of Gavin. I have often wished there was a way to give help & fellowship and you have done it! Congrats and once again, you never cease to amaze and inspire me!!!
Love,
Chelle

sarah said...

AWESOME!! What a wonderful outreach! What a blessing to so many families! Congratulations on this exciting endeavor!

britta said...

This is AWESOME Karen! It is so cool that you are helping others, and I am sure, along the way, it will help you, Madi, and Adam out too!

Have a great weekend!

Love you!

OHN said...

YOU guys are a chronically cool family :)

Anonymous said...

That sounds like such an awesome thing. I wished when the boys were younger there would be something for Jonathon. We had our adult group. I guess our family camp did that to a degree but was only once a year. We have made many great friends and have been so encouraged by our group.
Love,

Evy

Anonymous said...

Good for you. I especially like the part about sibling support. I wish this is something my kids could have. And I love your logo!

Lisa Marie said...

WOW! This is so awesome! What an incredible difference Gavin has made and is still making in the lives of so many... you are all an inspiration and bring hope to so many people. We love you and are so proud! Congratulations on this exciting new journey! -the Walk family

The Sutherlands said...

That is amazing! What a GREAT program to start! Again, thank you for such inspiration!

Mo said...

Fabulous!!

Jessica said...

Changing lives, Karen. Wow. This is the beginning of something amazing.
Praying for this new endeavor.

Rusty & Teri said...

More evidence of how Gavin (and his awesome family) continue to touch lives. TERRIFIC!!

Bethany said...

Very cool! If I might offer a suggestion -- ya know, in your spare time -- if you were to create this group into an online forum, I think it would be amazing. Being in the world of kids with Down syndrome, sometimes there are parents who have kids with dual diagnoses (i.e. Autism and DS, for example) that never feel like they fit in anywhere, because they are tackling issues that neither community solely has to deal with. I have a lot of readers from the DS community ... I'd love to help you spread the word if you decided this might be something you could do! :)

Gilda said...

Congratulations! On the start of the support group. You are amazing and a strong hearted woman I admire your strength to help other during your own loss. And the logo Madi, you, Adam, and Gavi LOVE it!

Colton's Journey said...

Thats so awesome. I wish our hospital did that.

Anonymous said...

Gavin, Miss you today. I had to go back and look at some of the pictures of your smile. Happy memories.

jennifer said...

I love this idea! Especially about the sibling group. That is one thing we struggle so much with. David's sisters are teenagers and are torn between their brother and their friends. They are an immense help when they are home but find it difficult to try to be "normal" in public. They also struggle with accepting that he is not going to get better and act like so-and-so's brother.

I hope this is successful for you and other families in your area. I also hope it catches on around the country.

Best of luck!