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!

IMG_2821

Busy weekend

When Emily was little I worried about her future.

Emily15mo

To put this in context, you need to remember that in October 1999…

Just days after the picture above was taken…  Genetic counselors a at the Montreal Children Hospital told us that due to Emily having Cri Du Chat syndrome, her future meant…

No walking!

No talking!

No understanding us!

No showing emotions!

No eating solid food!

At no point did they say this was a worst case scenario.

There was no doubt in their mind that this was going to be Emily’s life and we could see them feeling sorry for us.

We decided to give Emily the best life possible and that we would adjust to her needs and limitations.

This past weekend, was busy…

We had a roofing company over, putting a new roof on our house…

Meanwhile, Emily was starting her Cheer fall sessions.  It was time to talk goals and prepare a lesson plan She loved cheer this past summer so she’s ready for more.  Remember this picture?IMG_2820

An hour after cheer was done, Emily was at her baseball’s team end of summer game and party.  

  Emily and all her team mates got team jackets!  How cool is that?

  We had 39 players this year, divided into 2 groups.
We concluded Saturday with attending a hockey game.

Sunday morning, Emily was volunteering at her riding club. When coaches are tested to move up in their certifications, they need riders and Emily wants to help.

  

Emily helped coaches from other clubs on Sunday and they loved her 🙂

We had a busy weekend!

None of these would be possible if it wasn’t for amazing people getting together and wanting to provide opportunities for kids with special needs.

Thank you Cheer Olympia

http://www.olympiacheerleading.com/mobile/en/

Thank you Field of Dreams

http://monctonfishercats.com/fishercats2015/index.php/field-of-dreams

And thank you Cavalier riding club

http://cavalierridingclub.weebly.com

You are amazing and although I was grateful for this busy weekend to be over, I am even more grateful for the opportunities you are giving Emily and many others.

Thank you to your board of directors or owners and thank you to the volunteers who give their time, energy and positivity.

All of you, are part of our family now!

In the coming weeks, I will share more about Emily’s riding club as she starts her fall session this week and I will let you know more about Emily’s baseball team and our fully accessible baseball field project…