Today is CdLS Awareness Day

Today is Cornelia de Lange Syndrome Awareness Day. Today, and every day, we celebrate all of the beautiful children in the CdLS family circle and all of their amazing accomplishments. Please take a moment to view the above CdLS Awareness Video. Visit the CdLS Foundation website to learn more about Cornelia de Lange Syndrome. With your help, we may be able to find one child and one family that may be seeking answers and need support. I am an awareness coordinator for the CdLS Foundation ~ something I greatly enjoy. Today I am sharing with you the reasons why I became an awareness coordinator ~ and why it is so important to reach out and let families affected by CdLS know they are not alone.

Our son Joey was born in 2004 and diagnosed with Cornelia de Lange Syndrome (CdLS) soon after. Since his birth, my family's lives have changed dramatically in many ways - many of them good ways.

Even though therapy sessions, doctor visits and special education services have become our lives, our normal, we have been blessed with a gift more valuable than we could have ever imagined. Joey has taught us so much about life and love; he has lifted our spirits and enriched our souls.

He also inspired me to become a volunteer awareness coordinator for the CdLS Foundation. There are so many important things to learn and share about CdLS. My family has chosen an open and honest approach when sharing information about Joey's condition. The more people learn about CdLS, the more comfortable they are around Joey, and that is beneficial to him.

The CdLS Foundation provides information, support and the materials I need to promote awareness in my community through various activities. Educational awareness about CdLS is such an important step towards understanding and acceptance. It is also very important to let other families know they are not alone in the daily challenges of raising a child with CdLS. I know firsthand that it helps to know there is a huge network of support available.

And finally, I became an awareness coordinator for the CdLS Foundation because I want to let people know it is okay to have a child with special needs. It really is okay. We don't seek sympathy. We don't have to be embarrassed or remain secluded. We just want the world to accept our children for who they are, for the good things they have to offer, for the smiles they create, and for the hearts they capture. Becoming an awareness coordinator has been one of the most important, and best, decisions I have ever made. Promoting awareness about CdLS gives the the strength and courage I need to be a strong voice for Joey and all children with CdLS.

CHECK THIS OUT!

Our family was featured in an article yesterday in our local newspaper, The Columbus Telegram. You can check it out by clicking here. It was great to be interviewed and we are grateful for the awesome opportunity to help spread awareness about Cornelia de Lange Syndrome. The kids even sat still for the picture! Leave us a comment and let us know what you think!

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!

Heidi is having a CdLS Awareness Contest!

I would like to introduce you to Blue. Like Joey, he was born with Cornelia de Lange Syndrome.



Isn't he adorable? Blue's mom Heidi over at God's Grace in Practice is hosting a CdLS Awareness Day contest. In an effort to raise awareness about CdLS, Heidi is encouraging all fellow bloggers to do a post about CdLS whether you have a child with CdLS or not. And guess what? There is even going to be a prize!! How great is that?!? Click here for all the details on how to enter the contest. Saturday, May 9 is the 20th Anniversary of CdLS Awareness Day. Won't you help all of us spread the word about Cornelia de Lange Syndrome and possibly help a child and their family get the help they need? Please visit my CdLS family blog roll for more posts about Awareness Day. And as always, please check out the CdLS Foundation for information about this rare genetic syndrome. Thank you.

Sharing some CdLS Awareness...

Today I have decided to postpone my Thursday 13 edition H post until next week in favor of sharing some CdLS Awareness Day projects we have been working on this week.
Saturday, May 9 is Cornelia de Lange Syndrome Awareness Day. This year marks the 20th anniversary of CdLS Day ~ how great is that! We are so lucky to have a Foundation that works so hard on behalf of all the children and families that are affected by CdLS. I have been an awareness coordinator for the past couple of years and I thought this would be a great opportunity to share some ideas for raising awareness in your own community. In the past, my family and I have set up an awareness table at John and Tommie's baseball tournament, participated in Proclamation signings at our state capitol and made Awareness Day baskets. This week we made an Awareness Day "Bubble Basket" to share at Joey's therapy facility. I bought inexpensive small bottles of bubbles at Walmart, made some stickers on our computer, stuck them on the bottles and put them in a basket. I also included some CdLS brochures and CdLS tattoos. Wiggles & Giggles is displaying the basket in their waiting area and pass them out to the kiddos that come in for sessions. Thanks so much for doing this ladies ~ we appreciate your help!

The Bubble Basket...

The Bubbles...


A couple other things we made this week are some "goodie bags" for Joey's therapists, teachers and classmates. For the bags for the grown-ups, I got some clear bags and made a CdLS label for some candy bars. We put in CdLS pencils, sticky notes, bookmarks, and luggage tags. For the kids' bags, we put in CdLS stickers, tattoos, bookmarks, purple balloons, bubbles and a sucker. We tied each bag with ribbon. You can get bookmarks, pencils, stickers, etc. through the CdLS Foundation.

Teachers/therapists goodie bags...


Kid friendly goodie bags...


Candy bar label (we taped it to Hershey's Chocolate Bars)...


Feel free to try these ideas if you would like. They are simple and inexpensive and a great way to spread awareness about CdLS. You never know when you might reach someone that needs the help of the CdLS Foundation!
Shawn and the girls are at the ball field watching John's game, Tommie is off to baseball practice, and Joey and I are off to Kindergarten Round-Up! Yeah I know ~ Kindergarten! It does not seem possible! Don't tell the burglars no one is home! Have a Happy CdLS Awareness Day!