Interview | Lessons from my daughter

It’s the time again to introduce you to another family.

Today we meet Etta and her grandson Elijah.

1. Can you tell me about your family?

Our family consists of Michael (my husband), myself, three sons and Beth(our daughter-Elijah’s mom) 9 grandchildren. Beth, Elijah, and Jedidiah live with us.

2. Tell me about your loved one with cri du chat syndrome.

Elijah is 2yr. We noticed at 8 months old that he was still like an infant. He was not rolling over, showing no signs of sitting, nor anything an 8 month old should be doing. His brother Jedidiah was having therapy with babies can’t wait and we asked them about his behavior. We were sent for diagnostic genetic testing. We were told he was severe cri cu chat. Two weeks later, he rolled over, sat up, and crawled all in the same Week. He can walk but does not yet talk.

3. Tell me about doctor appointment, therapies or school.

He is now in occupational therapy and speech therapy. He is improving more and more daily!

Here he is!

4. What made him laugh on this picture?

He is a happy child. He was laughing because he got to play with Granpa,s drill.(no bit in it). 😊. Oh and he was outside. He loves outside.

5. Have you had the chance to meet other with cri du chat syndrome yet?

We hope we will soon. I think it would be fun.

Thank you Etta for taking time to share with me. I hope to meet you and your family one day.

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.