cri du chat syndrome | Lessons from my daughter

Emily started talking about going to see Cinderella during March break (first week of March).

As March 13th arrived, my daughter had decided that we were no longer going to watch the movie.

Why?

Who knows….?

I certainly don’t know and Emily didn’t give me any concrete reason why.

I blame this on her being a teenage girl. She just changes her mind because she can change her mind…

Early last week, I got a Facebook message from the mom of one of Emily’s baseball teammate.

Would Emily want to go see Cinderella with the girls?

My poor girl is so not used to being invited to outings that she never knows how to react. Yes…. No…. I don’t know!

So I said “yes of course, she would love too” and I took the conversation off line with her. Explaining how cool that would be.

By the time Saturday afternoon arrived, Emily was excited and off we went.

5 girls and their mom (and one dad… Emily’s dad of course).

The movie was great!

And for the second time ever, I wasn’t sitting next to my girl at the movie. I didn’t see her reactions, I was sitting behind her and had to wait till after the movie to see if she liked it.

She loved it!

She loved the Frozen short movie.

And on the way home she said… “Mom, you know…. Oh…. The alien? It’s Sheldon!!!!”

She’s right!

That preview was before the movie and she kept that information top of mind to tell us on our way home.

That’s my girl!!!

Slowly growing into a more independent young lady!

This week, I am introducing you to Caroline and Maxwell.

We haven’t had the chance to meet but I sure hope to have the opportunity to one day.

Hi Caroline, Can you tell me about your family?

Answer: Me and my husband live in London, and we have 18 month old Maxwell who, when he was born, had some complications and was admitted to the special care unit. Maxwell had low blood sugar and breathing difficulties. He was diagnosed with a floppy larynx on day 2. We were in the hospital for a week but it felt like a lifetime. I had complications following an emergency c section and the whole experience was traumatic.

Tell me more about Maxwell

Answer: When we got home we struggled to get over our ordeal and was worried about Maxwell as he still had breathing issues. He couldn’t lay on his back for more than a few seconds so changing him was difficult. We would put him to sleep on his side. Maxwell had some mid line issues so further investigations were to take place. The paediatrician ordered genetic testing but didn’t really explain why. At 5 weeks old Maxwell got ill and was admitted to hospital again with pneumonia. On our second day in the hospital the paediatrician came to tell us hat he had received the test results and that was when Maxwell was diagnosed with CdC. We were devastated and to this day our biggest fear has always been that Maxwell may not grow up mentally and may always be a child. All your hopes and dreams for your child go out the window and you just hope for a smile, some form of communication, a laugh….. We have been very lucky with Maxwell. He is doing so well and is such a happy boy. Always smiling and laughing and his fine motor skills are fantastic. He cannot stand or crawl but he bum shuffles and understands so much more than he can communicate back.

Tell me about therapies

Answer: We have weekly appointments with portage and physio along with regular checks for speech and language, endocrine and paediatricians. It’s hard going but all the hard work we put in is worth it.

Tell me a success story.

Answer: Maxwell signed for sleep recently and is starting to try to talk. We are so proud of him.

Here is Maxwell smiling at Christmas.