School presentation

Emily did it…. again!

She has amazed me beyond my wildest dreams!

This morning was the day. She got up feeling ready to present her syndrome to her classmates.

For you and I that would be the equivalent of opening up about our well kept secrets to the world. Or stripping in front of a crowd!

She didn’t hold back anything. She stood in front of her classmates and talked about how her doctors told us she would never walk or talk! She talked about how she’s missing part of her 5th chromosome, she showed the cri du chat awareness video and talked about our upcoming trip to New York City and our attendance to the 5p- society conference…

I was less nervous for her than I was nervous about her classmates’ reactions.

A class of 13-14 yr old kids reminded me of most of the meetings I have to attend. Some kids were listening, some were looking but were not listening, others were not even pretending to be listening…. Quite fascinating to see that regardless of the age group or situation, people in attendance are almost always the same.

Emily stood tall in front of the class and did her thing.

Her brochure, which she designed with her EA didn’t fit on the smart board properly but they managed with what they had…

She asked for questions, there was only a couple which she answered and although the teacher tried to get the conversation going it didn’t happened. Not sure if she will get questions later but if she does, I know she will be able to answer them.

Sometimes, for her to be so aware of her syndrome, is hurtful. She will tell us that she wants to be normal, to be popular and have friends… We started a journal last year where when she feels blue we track how amazing she is. We have lots of stories in there that we read together and it helps her see that she is extraordinary. That normal is boring! That she has overcome more in her life than most people will in their lifetime.

I wish people could see how much she has achieved before they see how far behind or different she is…

I wish kids would give her a chance… Even when she disconnects and can’t quite engage in their discussion, if she could really be included and not just standing or sitting alongside her peers, they would discover a really fun girl who has traveled and seen lots…

They would see Emily the way we see her!

In your life, do you take time to get to know someone before you decide if they are worth getting to know? Do you pre-judge people or do you give them a chance? What do you teach your kids to do???

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The best sound in the world

The best sound in the world has to be different for each person…

When we were told that Emily would not talk….never talk! I thought I would never have a chance to hear my little girl call me “maman” and that I would miss the most amazing thing….. Than I thought she would never say “I love you” and once again, I was heartbroken.

Many years later, Emily can talk. She can say maman and I love you and give kisses and hugs but the most amazing sound is not one of those words….

The one thing that will make me smile, the one thing that will completely dissipate my grumpyness (it’s not a word but I’m sure you understand what I mean). The one sound!!!

Emily’s belly laugh!

Not a forced laughter, not a tired laughter. A genuine belly laugh. The kind of laugh that will make me join her in which ever room she’s in just to look at her laugh and join in on the fun!

When I feel down, that’s where my memory take me…. Emily’s belly laugh… The most amazing sound in the whole world!

What makes you instantly happy?

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