Monthly Archives: November 2006

Blog Challenge: Angels Among Us

There’s something about Baylee that makes people want to do nice things for her. They know she is different I suppose, and want to be extra kind to her. We’ve been blessed by many “angels” over the years, but the small kindnesses stand out the most.

Sometimes those angels like to give us gifts….

One day we were dining at a buffet restaurant, and at the table next to us was another family who had a girl about Baylee’s size, but much younger. She came to our table and said she wanted to give Baylee her bracelet. It was a stretch bracelet…not terribly valuable, but I’m sure the little girl liked it a lot or she wouldn’t have been wearing it. Of course, Baylee wasn’t that interested in the bracelet (she hates to wear jewelry), but Dave and I were very touched by that little girl and could tell she had a very generous heart. Not many little girls would give away their prized jewelry! I hope her mother was proud.

A couple of years ago we went to a Rascal Flatts concert. Since Baylee is a music lover we took her with us. As we were finding our seats, a man in a cowboy hat came up and handed me a guitar pick and said “this is for your daughter”. At first I thought it was a little strange, but I took it with thanks and I knew he was giving it to her because he could tell she was different….heck, maybe he even knew she had CdLS. Then as Rascal Flatts took the stage, I recognized the fiddle player as the guy who had given us the pick.

Sometimes the angels have never met us. Baylee has needed an augmentative communication device for a long time. The school has always provided one for her to use at school, but we never had one for home. Since we are working towards becoming debt-free, the funds were never there for such an expensive purchase. I turned to Ebay and bought a Dynamyte device for about $300, but it turned out to be a lemon that could not be repaired by the Dynavox company. They told me they would send us another refurbished unit for what I thought would be the agreed upon price for the repairs for the Ebay lemon unit. I got the new unit which worked just fine but there was no invoice in the box. I emailed them to ask where to send payment and how much, but they responded that I owed them nothing. I’m sure they had no idea what that kindness meant to us right at that time when money was tight. Needless to say, when we purchase Bayle

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Filed under CdLS-KIDS Blog Challenges, Cornelia de Lange Syndrome

CdLS-KIDS Online Support Group

baylee_bunny.jpgWhen I talk to parents of older children with CdLS, they often tell me how lucky we are to have the internet as a source of support. I’ve been fortunate to have the internet since Baylee was born 10 years ago. It’s always been a part of our life “post CdLS”. I can’t imagine what it would be like to not have daily contact with parents who understand our challenges.

I’m lucky to be a part of a wonderful online support group full of supportive, smart and insightful people always willing to lend an ear or send a cyber-hug to people they’ve likely never met in person. All those people are a gift Baylee has given me.

If you’re a parent of a child with CdLS or even if you’re not, come visit us on CdLS-KIDS….the link is to the right!

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Filed under Cornelia de Lange Syndrome