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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Belly laugh

Let’s continue on my earlier thought about the best sound in the world!

Emily’s belly laugh!

Sometimes at night, when Emily is half asleep, I crawl into bed next to her, put my arm around her and slowly tickle that tiny spot near her belly button πŸ™‚ That one secretly ticklish spot that will make her burst out laughing!

I know I am not supposed to do that!

I am the adult after all and it’s past her bedtime….

I should help her fall asleep not make her laugh πŸ™‚ but I can’t help myself… her laughter is contagious. Within seconds we are both laughing and if hubby is around, he will most likely follow the laughters and join in on the fun.

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The thing with us and laughter has most likely to do with the fact that Emily cried non-stop for the first couple of years of her life…

When you spend day and night worrying for your child, watching her cry and vomit… watching her NOT sleep… you slowly get there too.

Where is there you ask???

There is that place where my worries for her slowly turned into worries for myself…. for us!!!

How are we gonna make it through this? When will we sleep again? When will I eat a meal that hasn’t been re-heated multiple times?

Pumping milk, whenever I could. Eating cold food as I gave up on warming it up. Wishing I could be at work and not at home… the guilt of wishing I was at work!!!

A vicious circle!

I remember the day that hubby came home to find me crying, sitting on the kitchen floor… I had pick that spot as I believed that was the farthest away from Emily’s crib… She was in her crib, she was safe and I was exhausted, I couldn’t take it any longer but I couldn’t be far just in case her cry changed… In case she needed me….

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When Emily was little any sign of a smile was a reason to celebrate.

Laughter was a delight.

Laughter was sanity in our completely insane world!

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So the most amazing sound in the world is… Emily’s belly laugh!!!

What’s yours?