When I started this blog almost 4 years ago (eek!), it was because I wanted to give others hope. I wanted to show those who were looking for information on Cri du Chat and anyone who happened to come across my blog what life is really like for us with Olivia, warts and all. But I definitely wanted to focus on the good and the happy and the hope because that’s what I was most surprised by. I had no idea there would be so much joy in raising a child with special needs; I wanted to let others know that the happy definitely outweighs the sad.
This week is the first annual international Cri du Chat awareness week. The syndrome is very rare and not many people, including medical professionals, are aware of it. This week we are hoping to introduce as many people as we can to the syndrome and the families that are affected by it. My take on it is that it’s another week to give Olivia a voice. To let people know that even though she has this syndrome, it is not who she is. It does not define her. It is not her essence. It’s just her syndrome.
Olivia is an 11-year-old girl who would live in her one-piece, footed pajamas and slippers 24 hours a day, 7 days a week if she could. In fact, she’s been to a few soccer games lately in her “flippers” as she calls them. Her hair is super thick and brown and luscious and her eyes are the color of melted milk chocolate; she has a megawatt smile that she shares with everyone. She loves to play her new pink Barbie guitar that we found at a garage sale for $1 and sing “Clementine”. She loves all things Disney, Tom and Jerry and Spongebob. Her brothers are her best friends. Being with me is her favorite thing in the whole world. She loves her Daddy. She screams at the top of her lungs with excitement when my Mom comes over. She loves dogs. She has a crush on a boy on her baseball team. She has friends at school, she participates fully in everything at school. She is joy personified. To know her is to love her.
That’s what I want you to take away from this week. People with disabilities are just…people. They have a mom and a dad and siblings and likes and dislikes and feelings. They are just people. Just like you and me.
Visit here for more information on 5p-/Cri du Chat Syndrome.