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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

Emily15mo
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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9 thoughts on “My baby girl’s syndrome

  1. This is so beautiful, such a beautiful girl Emily is…Your journey is inspiring, thanks for the post

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