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. 

My Cinderella

Since Mac opened at our mall, every time we walk by I ask Emily if she wants a make-up makeover. 

Every time, she says no. 

Today wasn’t different. 

I showed her the new Cinderella products and she still said no.

We walked around the mall and I stopped to look at the Cinderella lipsticks on the way back. 

The mall was fairly quiet and the girls at Mac weren’t busy with other clients so I engaged them in Cinderella discussion. Confirming that the items were brand new, only released for sale today and not quite sold-out yet. 

Emily liked the colors but didn’t want to try until one of the girls started talking to her directly. 

I love it when sales people understand that I’m there for Emily and that she might need help coming out of her shell. 

Once they started talking to her, we had Emily try the lipstick than I asked for a neutral foundation for her eyelids. 

They recommended a product and asked Emily if she would let them show her how it worked 🙂

Bingo!  They had her in the chair. 

Didn’t we all play make-over when we were kids?  I just wanted Emily to experience it too and today, I saw Emily talk make-up with the girls. I quite frankly wasn’t sure I would ever see this because most people won’t take the time required to win Emily over. 

Today, they won her over and made me spend some hard earned money

We all won!

They applied the Pro Longwear Paint pot cream on her eyelids and blended it in. Suddenly Emily right eye wasn’t red anymore. Emily liked it so I pushed my luck and ask if she wanted to try the Cinderella eye shadow!

She tried it!  She picked the sparkly one!

At that point I figured it was time to show her the shimmering powder!

Ok, I know, I’m a kid….  But I loved this. 

I loved being in a awesome make-up store with my teenage girl.  I loved seeing her eyes sparkle as she saw the difference good subtle make-up does. 

I want my girl to have good skin routine and nice make-up. She deserves it. 

So I bought her some nice things today!

I even bought the second lipstick just because I liked it 🙂

Don’t we all deserve to feel like Cinderella, the most beautiful girl at the bal?