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???
Pingback: Introduction to Cri du Chat Syndrome | Stop the Stigma
Thank you!
This is beautiful..I would even title it “What do YOU see after you say hello?” very moving and wise words!
Thank you! I love your title suggestion. I wouldn’t call myself wise but I’m honest in my writing and I believe this is why people are touched by it.
You had me teary in this one. Love you! xxx
Love you too! Did you read the yearbook post?