My friend Amy always teases me that you really don’t have Cri du Chat. That it’s all a mistake because when you look up your syndrome, it says nonverbal. Most children with Cri du Chat don’t have words or very few. Because of luck and a lot of hard work, you have words. Tons and tons of cherished words.
When you were small, your Dad and I would have conversations about how we would much rather you had words than being able to walk or ride a bike. The physical delays we could make up for but words? How would we make up for that? I distinctly remember when you were around 5, and we were trying to get you a communication device, your Dad saying to me “I just want her to be able to tell us what hurts if she’s hurting and what she wants to eat if she’s hungry.” That’s all we wanted. We were blessed with so much more.
There’s not a day, a moment when you’re with me really, that I don’t marvel at your language. On my birthday, you brought home a card that you had made yourself. Inside were words that you chose just for me. The card read:
Happy Birthday! Heart. Sorry. It’s my brother’s fault. Fart….tttthhhhh!!! A big hug.
I will save that card forever because it contains your words. Exactly what you wanted to say. And you were able to say it.
When we were at Mohican State Park and your brother and Dad were climbing the 80 foot tall fire tower, you looked up and then looked at Gabe and said “Holy hell that’s high!” You have no qualms about spouting out a “bullshit!” appropriately or a “Moron!” when you feel like it. Your words aren’t always pretty, but I love them all the same. You constantly make us laugh with your funny turn of phrase.
Every day you tell me “Mama? You’re so beautiful.” or “Mama? You’re so kind.” or “I love you so much, Mama.” or “How many kisses do you want?” It’s endless all of the poetry that comes out of your mouth and is directed at me. It makes me absolutely glow inside.
Last night we were reading “Would you rather be a bullfrog?” before bed. After each choice, I’d stop and wait for your answer. You’d think for a moment and answer and give me a reason for your answer. “I’d rather be a butterfly. Because then I’d have wings and could fly.” Matthew was looking at me like I was nuts because I was alternating between joyous giggles and happy tears. You, this girl who wasn’t supposed to have words, were answering thoughtfully. It was a joy to behold.
I don’t know what I did to deserve you. I certainly don’t know what I did to deserve you and your beautiful, precious, cherished words. But I’m so glad to have them…and you.