My baby girl’s syndrome

Today marked the 16th anniversary of Emily’s diagnosis…

Cri du chat syndrome… Or CDC syndrome… Or 5P-

16 years ago, our life changed

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This 15 months old little girl has changed us. 

I write about Emily’s success, I tell you about all the wonderful things she does and I show you pictures that showcase my girl in the best light possible. 

I told you about the day the genetic counsellors told us that she would never walk, talk, recognize us, show emotions, learn to eat…

I told you how she can do all of those things. 

I don’t tell you about some of her challenges because she asked me not to. 

The fact that she can ask me not to tell you some of her more private struggles is a success. 

She understands that some things are private. 

I do my best to take you into our world but I don’t believe my writing will ever do Emily justice.

I don’t dwell on the things that I couldn’t and sometimes still can’t control. 

The hair and nail pulling, my back pain, sleepless nights, completely scary amount of vomitting, surgeries, hospital stays, getting slapped, pushed, kicked or hit, biting, teeth grinding, my concussion, my TMJ, school meetings, tutoring, various therapies, sign language classes, PECS system, psychologist assessment, doctors appointments, vacation days spent at the hospital, schedule juggling and financially broke…. Just to name a few…

This journey we’ve been on is not an easy one. 

On many occasions, it sucked!

The thing is, I can’t live a life where those moments define me and my outlook on life. 

I chose to be happy!

I chose to be inspired by Emily!

I chose the smiles, laugh, cuddles…

I chose to see that Emily can help with small tasks around the house, I chose to see that she is happy in school and continues to learn. 

I chose to sing my head off with her in the car and watch whatever it is she wants to watch on tv. 

I love that she understands two languages and understands empathy and other complex emotions. 

I love how stubborn she is!  Her determination is admirable. 

I love how patient she is!  She will continue to explain herself until she’s understood..

I love how girly she is. 

I love how fearless she is.  One day I will show you videos of her signing on stage at a coffee shop or taking over a dance number 🙂

I love watching her cheer, play baseball, ride horses, sail, shop,drink tea, bowl, …

I love how much she loves me!!!

To see myself through her eyes makes my life and all the challenges we’ve been through worth it. 

To be Emily’s mom is the hardest most amazing thing I have ever done. 

My girl has cri du chat syndrome but it doesn’t define her!

She defines it and she is awesome!

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How to go to a christening without actually going…

This coming Sunday, my youngest nephew will be christened…

Emily and I are going…

Girls road trip!!!

14 hours of teen pop music… (7 hours there and 7 hours back)

I love driving and I am ok with Emily’s music, we will sing our heads off for hours.

From time to time, she might switch to the back seat and watch the Big Bang Theory on a laptop.  She will wear her headphones and I will put Bon Jovi on which means that within minutes she will decide to come back to the front seat and put Justin Bieber, One Direction or some other teen idol back on…  🙂

Once we get there, we will be spending time with my mom, my baby brother his lovely wife and their 3 amazing boys.  I am really looking forward to the cuddles and the love I get from my family!

The christening is Sunday, Emily and I will go to the church:

She will not want to go in

I will bribe her a little…

We will get in

We will sit near the back and within minutes of the ceremony starting, Emily will get nervous and agitated…

The voices will echo in such a way that it will bother her ears

She will try hard to stay there but won’t be able to…

I will keep encouraging her with soft words and hold her hand.

I will not be listening to the ceremony

I will be completely focused on Emily.

If the christening takes too long, Emily will not be able to stay and we will end-up going outside for a bit.

I will try to negotiate to go back in…

She will cry, not a loud obnoxious cry, just a soft quiet one that makes me feel like the worst mom ever for pushing her so hard.

I will give-up

We will sit by the car or in it depending on the weather and wait for the ceremony to be over!

…..

…..

And that is “how you go to a christening without actually going to it!!!”

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Here is a picture of the only christening Emily ever stayed at….  hers!

If you were in my place, would you keep trying?