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?
First and foremost Pascale it was so nice to finally of met you and your family. Secondly, Thank you for being so open and honest. I think we as parents of our sons/daughters have a special bond that makes us more than just a family we met somewhere. Especially us moms we seem to have a understanding of one another like no other. We can truly say we do relate and understand what we are going through in this journey together. I look forward to seeing you and your family again. California is in 2015 ?? Really? Where???
Thank you Tammy, it was nice to meet you, your family and so many others we knew only through facebook. California would be nice, we’ve never been so it might be our next conference.
Beautifully said! Brought tears to my eyes! Can’t wait to read more!
Your daughter so touched me. It was thrilling watching her at the fairy tale ball. She looked soooooooooo happy . Thanks for coming and sharing her.
Thank you, we both had fun, it was a magical evening.
I cried! What a beautiful milestone.
She looks great and it sounds like it was definitely worth it. Looking forward to hearing more stories! 🙂
Thank you! I do have many more stories to tell. She struggled from time to time but did great overall.
I cried reading this… How beautiful , amazing ,wow can’t wait to read more
Thank you Rhonda! As long as they are good tears…. I’m ok with it!
we are going to try to go to the one in 2014 in san antonio it is very close to were we live hope u and emily can go would love to meet emily and u. So emily is afraid of balloons so is tessa so there are other children that are afraid of balloons and the loud sounds. So we have emily and tessa that have something in common. what are your chances of coming south to texas to the 2014 one. Would really to to meet Emily and you and i think Tessa would have fun with another girl like her. I see that Emily is more advance then Tessa do u work with Emily alot on her speech?.
The chances to go to San Antonio next year are quite slim right now as this conference combined with our vacations costed a small fortune. I guess we will see as we get closer to the time. We worked on sign with Emily when she was little than switch to a picture board when she started school. At 7 ish she didn’t want to use the pictures and worked really hard on speaking. We’ve had limited therapies for everything… Therapist told us what to do and we and the school tried our best to work on those things… If not Texas in 2014 maybe California in 2015? I’m sure Emily and Tessa would like each other.
Loved your post. tessa is also afraid of balloons and she is 19yrs. i am glad that u got to meet others like your emily when we went in 97 to a conference it hit me hard to see the children read and talk and my child could do nothing. Now tessa can walk do some talking if u prompt her tessa trys to be indepent but still needs others to help her.
Thank you Nancy! This is why I waited so long to go to a conference. I was so afraid of my reaction, meeting other kids, comparing Emily to them… I didn’t believe I could handle it. Emily is still behind other kids on some aspects and ahead on others but now, she’s my Emily, I am comparing her to herself only and not to others. To see the little ones, sent me back several years. I recognized Emily in so many of them but not in the 2 or 3 years old walking and running around. Those little kids are physically so much further ahead than she was, its amazing. I can’t wait to see them grow older and witness what they will achieve!
Pasquale……I’m so proud to have met Emily and your family. I’m even more proud of Emily for conquering her fear of the balloons and having an amazing time at the banquet. Please give her big hugs from Alex and let her know that she has a special friend in New Jersey. Thanks a lot for making ME cry after reading this blog…..love you.
Thank you Joanne. I love you too. Your family is wonderful, Alex likes to hugs and Emily loves hugs so those 2 are a match made in heaven. You have friends in New Brunswick, Canada!!! If you ever make the treck north, let us know!
Welcome back. Another goal achieved. She looks amazing and you sound as if you’ve had a great time. Look forward to hearing more.x
Thank you! Good to be back! That goal was more for me at first but I’m sure Emily will now consider going to dances or banquets in the future. She might still decide not to go but to see her have fun was priceless.
Giant steps and baby steps. For you, for Emily, for all of us. She’ll always remember this one and might be persuaded again. Obviously, she loves music. A great way to encourage and stimulate possibilities.x
She loves music and dances at home all the time. This was a huge step for her! She had so much fun!
So glad you had a great time. My daughter, Lynn, is 28. I can only imagine how you felt being in a “normal” crowd. Feeling normal is something I so desire. Can’t wait to hear all you have to say and see your photos. Emily is a beautiful young lady. Love the dress.
It’s incredible to know that the people looking at your child are admiring her, not judging her. It’s refreshing to see kids of all ages reach out to each other and seeing your child included. I wish one day, you get this feeling even if just for a short time, its wonderful.
Very inspirational. I too am teary-eyed. What a great story.
Thank you, with Emily it’s always on her own term but sometimes if we can manage to keep her long enough somewhere, she will see that she can manage… I had a blast!