I often talk to new parents (mostly Moms) of children that have been diagnosed with Cri du Chat like Olivia. That's the whole reason I started this blog.
When I first found out Olivia' diagnosis, there was so much darkness. I couldn't find my way out. I went on the internet and only found a couple of sites and they did not make me feel any better. They made me feel worse. I decided that day that when I found my way out of the darkness, I would have a website or something that would be positive and help bring new parents into the light. That's my whole mission...to help parents see the light.
At the beginning it's so much darkness. The doctors' predictions, the amount of appointments, the comments about your baby's cat-like cry, telling family and friends, their reactions, worry about how on Earth you are going to do this for the rest of your life.
And then there's light. Your baby smiles, finally, and lets you know she's in there. She will be better than you ever imagined.
Darkness comes again when you play with other kids her age and you can't believe all that they are doing. They are sitting up! Walking! Eating table food! Babbling!! Cooing!! What is all of that?
And then she laughs. She rolls over. She grabs for you. And there's light.
Over the years, the darkness comes less often. But sometimes, because it's been so long, you are plunged into and almost can't handle it. It's big things, it's little things. Someone stares and it really bothers you that day; some rude person at the zoo asks you "what's wrong with her?"; you can't buy cute shoes for her because they don't fit over their orthotics; you see a show about prom and realize you won't get to do all of that; the thought of her living with you forever.
And then she says "Mom, I love you." and gives you a kiss. She gets invited to a birthday party by friends...FRIENDS!! She wrestles wth her brothers. She tells a joke. She smiles. And all the light floods in and the darkness fades and you can't even remember why you felt bad in the first place.
It's so easy to get lost in the dark. But, damn, it's so much better and happier in the light.