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Saturday, May 9, 2009

What CdLS means to me...

CDLS. Simple letters that don't mean much to some people. Up until 5 years ago, they didn't hold much meaning for me either. Now, these four letters carry a great big meaning for me and my family and other families we have come to know and care about. Cornelia de Lange Syndrome. Quite a mouthful isn't it? CDLS. Scary letters? Sure. Letters that hold the key to a life of unknown obstacles? You bet. But I have learned that these letters also hold a very special meaning. These letters have taught me a lot. And these letters have led me to a life that I feel very blessed to be a part of. C stands for Courage. I have found within myself a courage that I never knew existed. Courage to stand up and face the unknown. Courage to acknowledge that I have a child with a disability. The courage to help him any way I can. I am proud to have in my life one of the most courageous people I know ~ my son Joey. He faces so many challenges every single day and tries his best to triumph over all of them. D stands for Determination. I am determined to learn everything I can about Cornelia de Lange Syndrome. I am determined that Joey will have the best opportunities that can be made available to him. I am also determined to raise awareness about CdLS whenever I can. You never know when you might reach that one child and that one family that may be missing out on getting the help they need. L stands for Love. The love that surrounds Joey and our family is indescribable. His disability has pulled us together and he has taught us a huge lesson about unconditional love. He loves us. We love him. Sometimes thats all we need to remember to get us through the rough spots. S stands for Support. I don't know what I would do if I didn't have the the strong support network of other CdLS friends and families. It really helps to know we are not alone in facing the struggles of raising a child with CdLS. We lean on each other. We share our joys and our sorrows. I encourage any one out there that has a child with a disability to seek help and get the support you need. You will be so glad you did.

Today is also a special day for our family. It marks the 20th anniversary of Cornelia de Lange Syndrome Awareness Day. We are so grateful to have the CdLS Foundation and all of its staff who work tirelessly every day to help better the lives of our special children. To learn more about CdLS and the Foundation, click here. If you would like to read Joey's story, click here. And please take a few moments to visit our CdLS Family blogroll. You will meet some of the most amazing kids ever. Their pictures and stories will touch your hearts as they have ours. Happy CdLS Awareness Day!


  1. Ohhh Rachelle, I love this post...it is exactly how I feel!!! Yes the article was in todays paper, Sat May 9th..... I am going to post it now...

  2. PERFECT!!!! you said it all so well! and it is wonderful to see the CdLS letters in such a way! :) thank you for this post and happy mother's day!

    love the baby pic of joey!

  3. What a wonderful post. I really enjoy reading such optimistic words. Thanks so much for being part of the blogging community. It really helps me a lot.

  4. BEAUTIFUL!!! Your post sums it up so perfectly. Thanks for being such a vital part of our blogging community...your optimism and spirit get me through many days :-)

    Hope you had a Happy Mother's Day


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