Well, this is it! We will be back home shortly.
10 days away, exploring New York City for the first half and participating in the 5p- society conference for the 2nd half.
By now, you all know that Emily has the cri du chat syndrome. Over the last 4 days we’ve met other families who have a child with the cri du chat syndrome.
Emily is 15, this was our first conference… For the first time ever our little family was just plain normal…
There was 94 families in attendance and 24 or 25 first timer like us…
One family came all the way from Iceland and their little girl was so amazing. This tiny 2 year old was walking around. What a joy it was to just look at her go!
Most families were from the US but we had a nice Canadian representation too.
We’ve met a little guy who is 15 months old and a 51 year old lady.
As per usual, Emily was first attracted to the little kids but slowly realized that the teenagers here were differents, in a good way. They either had Cri du Chat or had a sibling with cri du chat so to reach out to them was easy for Emily.
We had some struggles over the weekend and I will get to those in other posts…
Today, I want to tell you about the banquet/dance we had last night. I didn’t ask permission to post the kids pictures here so I can only show you my little girl but I can tell you about the first time in 15 years where I’ve danced with Emily until we were completely exhausted…
Emily got herself and Madison ready for the bal.
Earlier that day, Jon and I noticed balloons going in the banquet room… Emily is afraid of balloons… We’ve been working on her fear of balloons for years so before getting ready for dinner, we took her to the banquet room to look at the decor.
She didn’t like it but agreed to give it a try.
We brought her iPhone and headsets to help her cope with the noise level in the room.
It’s always good to be ready.
She ate her main course while we had our salad and than she was ready to leave. She wanted to get out of there before the music would start.
We kept talking to her, explaining we wanted to eat too, hoping to keep her there long enough for her to realize it could be fun.
Alex stopped by, than Celia, Rachel, Taylor and many more.
Slowly, Emily relaxed.
Something amazing happened…
Emily started enjoying herself, recognized a song and decided to get on the dance floor…
After each song, she asked if we could leave than recognized the next song…
We danced till 10pm. Only stopping for the silent auction and draws.
Emily bought some DVD in the silent auction!
We worked up a sweat.
I looked at Emily dancing with boys her age and older than her and watched her dance with many girls…. She joined in line dancing madness. It was beautiful!
I didn’t cry this past weekend during the conference but last night, while dancing with Emily and watching her having fun with other kids, I came really really close to cry…
I just couldn’t allow myself too as Emily might have thought I was sad or upset and my fairy tale evening would have been ruined!
Over the coming days, I will write about our trip, our success and struggles.
I will put pictures and tell you about the array of feelings/emotions that have hit me in the last 10 days. I will update you on our trip, the trip that started all this blogging madness. The trip that triggered Emily’s desire to talk about her syndrome which forced us out of our protective bubble…
Was it worth it? Was it worth busting our safe bubble?
What do you think?