Cri du chat Syndrome

Lately, my blog posts haven’t been as much about Emily’s syndrome… 

They have been about Emily. 

Our trips, make-up, fashion, art and so much more…

I didn’t avoid her syndrome…

I just, sometimes, forget about it!

It feels good to forget about it!

Than, out of nowhere, it hits me. 

Emily will be 17 in June. If she had been in school in Quebec, like I did, this would mean, going to college in the fall of 2015. 

When I was 17, I moved over 1000km away from my home to pursue my studies. 

I had a boyfriend and had my driver’s license. 

I could manage groceries, pay bills, use public transportation and study hard.  I wasn’t a good cook but never starved. 

I learned to cook eventually. 

So, sometimes, I forget about Emily’s syndrome. 

I love seeing her for who she is. 

I love remembering our vacations and thinking about the next one. 

I love helping her get ready in the morning, helping with her hair and trying to teach her about skin care and make-up. 

What I even love more is when I ask if she needs help with something and she says no. 

Over the last year, she has learned to put her dishes in the dishwasher, start the dishwasher, makes tea, start her shower on her own, start the washer and dryer, comb her hair and even made her own pony tail…

She played baseball at the Rogers Center in Toronto and slowly started to ride horses without a horse handler 🙂

Her reading is improving and she’s interested in learning how to cook!

This week she started making her bed!

Most of those things are quite insignificant for “regular boring” kids but when you have an exceptional daughter like mine, those are spectacular achievements. 

Slowly but surely, she is getting older…

Slowly but surely she continues to prove that her diagnosis of “not walking, not talking, not feeding herself, not showing emotions, not recognizing us…” was more of a worst case scenario rather than a sure fact. 

Some new babies being diagnosed with cri du chat syndrome, are still being told about all the things they will never do.  Some are being told they will not live to be 1 year old. 

I want the world to know about Emily. About her syndrome and about her successes. 

My girl is awesome and sometime I prefer to talk about her awesomeness rather than dwell on her (and our) struggles. 

It makes me happy and I wish it brings happiness and hopes to parents everywhere. Regardless of the diagnosis, what your child will achieve will bring you joy. Regardless of the struggles, you will find happiness in the smallest achievements if you allow yourself to see them and celebrate them. 

Advent calendar

This could have been so bad!!!

I bought Emily an advent calendar. The kind with the little doors hiding tiny chocolates..

It’s Hello Kitty and super cute. I got home last night after buying it and completely forgot to show it to Emily.

I left it on the kitchen counter…

I came home after work today and walked in on Emily sitting on the couch with the Hello kitty calendar!!!

My first reaction was to assume that she ate all the chocolates.

I politely and nicely asked Emily to bring me her calendar than discovered something truly amazing.

She only opened 3 doors. One for each December days she had missed.

If this is not a huge success I don’t know what is a success anymore.