cri du chat syndrome | Lessons from my daughter

No matter what disability one might have, Able Sail believe we can all enjoy sailing.

Lately, many new people have started to follow Lessons from my daughter, I am humbled that so many have decided to read about our journey and at the same time, increase the very small percentage of people who have heard of Cri du chat syndrome.

If you are new to our blog and want to learn more about Emily’s diagnosis, please try those links:

5p- Society

Introduction to Cri du Chat syndrome!

Raising Awareness

Every spring, we look at things to do for Emily during the summer.

It’s not as simple for us as it is for parents of other 17 years old teenager. We can’t let her use one of the car to go to her job or spend time with her friends. We are not planning her going away to college or university…

Since Emily has been 12, she’s been too old for day care and summer programs while being too young mentally for camps and programs for kids 12 years and older.

We found ourselves in a really strange place…

Jonathan worked part-time to stay home for Emily for awhile than moved into an overnight schedule so Emily could be home during the day, while he would try to sleep!

Try being the key word!

Emily has grown older and learned valuable life skills over the summer months but we feel guilty that she’s not socializing and participating in activities… allowing her so much free time has a down side… so much time watching tv, listening to music and playing with her dolls… little stimulation, little learning opportunities.

What are parents supposed to do when their child is too old for day programs but too young for the programs she’s old enough for…?

Quite a conundrum!

This year, we made some changes, Jonathan is now working from home during the afternoon and evening which allowed him to wake-up with us in the morning and spend time with Emily when I went to work.

Emily continued her tutoring over the summer months (we are not forcing her, she loves it), she joined a new cheer team, continued baseball, joined the summer program at GMACL and started to sail!

Yes, we’ve put Emily into sailing!

I had heard about Able Sail in previous years and talked to Emily about it but she wasn’t interested!

This year, she said yes! And she loved it!

Could you imagine a better place to spend some time over the summer months?

Jonathan loves fishing and boats… so this was a perfect activity for them to do as opposed of Emily and I.

Look at my girl! She’s learning about sailing and loving it!

If you are interested to learn more about Able Sail, have a look at their website here : Able Sail

I hope you can find something similar in your part of the world!

With fall around the corner and school starting next week, we say goodbye to sailing, baseball and the summer program at GMACL and we are excited that cheer is continuing and that horseback riding will be starting again for the fall season!

I can’t type fast enough to tell you about all the wonderful things we’ve done this summer.

Tonight I deserved some of my favorite food!

I try not to complain about my many aches.

My body hurts, all the time but not enough to stop me from moving along and finding my happiness.

For my 40th year (this year) I decided to start taking care of myself…

The physio helped my lower back than I went to a massage therapist for my arm and when my massage therapist said she wanted a chiropractor to have a look, I followed her recommendation.

I have visited the chiropractor 3 times this week. Monday, I came out of there with my left side from my ankles, to my fingers, to my ear and my head hurting. I was exhausted.

On Wednesday, I was tired but managed to get some work done after my 2nd appointment

This morning I woke up with a headache but went back this afternoon for more.

I think it’s working… I am not as tired and although my head and ear still hurts, the rest of my body is feeling different. Not necessarily better but definitely different.

So why my title?

After 3 visits at the chiropractor, tonight, I deserved some of my favorite food.

So tonight, we ate grapes

And a baguette, some of it sliced and some of it diced 🙂

Dipping oils. I don’t believe Emily ever dipped bread in oil or vinegar before but she gave it a try tonight. I love this about Emily. This little girl who wasn’t supposed to be able to learn to chew and swallow food on her own due to her cri du chat syndrome, eats a more diversified diet than most kids her age.

Emily will try anything and loved almost everything.

Tonight, her favorite was olive oil infused with white truffle 🙂 Quite a strong flavor, trust me!

I prepared some cheese (Boursin, Brie, Gruyere, old cheddar and marble cheddar) and veggies than made Emily’s favorite dip.

Many of my favorites 🙂

But a food fest wouldn’t be complete without an Angel food cake. Tonight, I didn’t want to bake it so I bought it already made and got some strawberries and whipped cream.