cri du chat syndrome | Lessons from my daughter

Today I was inspired.

It happens regularly that Emily inspires me but today it was a whole community.

A mom to a new 10 weeks old beautiful child with cri du chat syndrome asked our Facebook support group if her baby would ever smile.

What was a really raw question generated the most amazing answer. Her post filled quickly with pictures of smiling kids of all ages.

We are a really special support group, we are a family and I would love to introduce you to our extended family.

I’ve reached out and it looks like many families are ready to tackle this journey with me.

My first interview will be with Emily.

Q: Hi Emily! Can you tell me a little bit about yourself?

A: Well… I have no idea. I play a lot of baseball. I have two dogs. I do some painting and that’s it. I am 16.

Q: Can you tell me about your syndrome?

A: My syndrome (giggle). I have cry like a cat syndrome. It effect my #2s. (Laughing out loud now). It effect my voice, my eyes and of course it effects… Yeah.

Q: Do you see yourself as different?

A: No

Q: Do people see you as different?

A: No

Q: Do you have hobbies?

A: Painting, puzzles, horseback riding, bowling and baseball.

Q: What do you like best about school?

A: Everything.

Q: What would you like to do when you grow-up?

A: That’s a really trick (tricky) question. I have no idea.

Thank you baby girl. You are awesome.

Going forward, I will have 5 standard questions for families and some for the person with cri du chat syndrome.

I can’t wait for all of you to meet our extended family.

In English Language Art class, Emily was asked to tell about a random act of kindness.

She wrote about making me coffee in the morning 🙂

I thought that was good but we got a note home saying it had to be something you do for no reasons, for someone you don’t know.

That left us puzzled.

For Emily, someone she doesn’t know is not someone she interacts with.

We’ve spent years teaching her about safety and personal spaces.

That homework got difficult suddenly so we left it aside for now.

Tonight, after a fabulous birthday party, we stopped at the Shoppers Drug Mart.

As we walked in all chatty, I noticed 2 guys looking at Valentines cards. One of them was looking at us. We get looked at quite a bit, I barely ever noticed it.

Emily and I looked for treats, little snacks and Valentines.

On the way to the cash register, Emily grabbed a Lindt rose, I told her we had enough stuff already and to put the rose back.

As we were paying, I saw those 2 guys again, waiting at the cash register behind us. From up close they looked more like father and son…. Maybe.

I’m not good at guessing people’s age.

Emily and I walked out and as we were getting in our vehicle, the younger guy came out of the drugstore, walking fast towards us… Well more like towards me as Emily went around the truck to her door.

Him: “excuse-me”

Me: “yes” (thinking we dropped something)

Him: “she said she wanted a rose right?”

Me: “yes”

Him: “here” (pointing the box of Lindt rose for me)

Me (smiling): “you can give it to her”

He went around and gave it to Emily who said thank you and climbed into the truck.

Once in the truck, she blushed and had tears flowing.

“Random act of kindness” experienced first hand by Emily.

It was so sweet, and the fact that he asked me before offering the chocolates to Emily was really lovely.

I don’t know why she caught his eye when we walked in but I know she will always remember Valentine’s week, getting this gift from a stranger.