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NYC – Day 6 to 10

Yes!

I know!

I left you all hanging with my NYC post….  I believe I left you with Day 6 – part 1…

I owe you Day 6 part – 2 to Day 10.  Our journey to Long Island and to the 5p- Society support group conference.

What is the 5p- society?

http://www.fivepminus.org/

The 5p- minus society is the support group of individuals who have Cri du chat syndrome and their families.

Each year, there is a conference somewhere in the US and it is an occasion to discuss and learn about various topics.  From education, to therapy, to puberty, to successful relationship while rising a child with special needs.

Jon, Emily and I had never been to a conference.  Our whole trip to New York City was built around this conference!  Emily deciding to talk about her syndrome came from her excitement in attending this conference.  My blogging adventure was by consequence driven by us attending this conference and allowing people in our bubble!

Up until July 25th 2013 in the early afternoon, we had never met another person with Cri du chat syndrome.

We got to the hotel, checked-in and went hiding in our room for a bit.

I know, not really brave of us but everything considered, it took us 15 years to get there so what was a couple more hours?

When we finally went downstair to register, we met Rochelle!  That girl was really social and funny!  Her facial expressions were priceless!  I can’t wait to see her again one day!

We went down and sat in the Welcome address room.  Everything was going well, we met Rachel, her dad and stepmom.  They were lovely people.

Then the microphone got turned on which really bothered Emily.  She couldn’t get out of there fast enough.  Jon went with her.  They were gone for most of the presentation.

Next was the new family orientation!

My blog was mentioned 🙂 and I spoke a little!!!

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Emily and Jon had returned and left again by the time this happened.  There was a new “Big Time Rush” movie on tv that Emily didn’t want to miss.

There was something like 94 families in attendance at the conference and 25 first timer like us!

As I was sitting in that room, I realized that I was listening but looking at the little ones walking around.  To me, they are truly amazing.  To an outsider, they would be little ones who can’t quite walk properly.  Funny how your perspective and life experience changes how you see something!

Once this meeting was done, I joined my family in our room and we went to bed!

Day 7

The day started with breakfast, followed by dropping Emily at fun camp, grabbing another cup of coffee and finding our meeting room.

First stop, parents panel.  It was so nice to meet other parents of kids around Emily’s age with the same syndrome as Emily.  We went around the room and list our main concern, we all nodded, we all related, we all agreed.

That must be how it feels for parents talking at soccer practices or dance classes.

For the first time in 15 years, we were in a room full of adults who understood us!  They were like us!  They live in whatever town in whatever state or province but we were the same!

I was not the strange one… or the one with the strange kid…

Well, yeah….  I was still weird but it wasn’t as obvious!  🙂

I can’t remember what the second session was about!  The conversations were so great that as a group we decided to stay in the room longer and continue talking!

When it was our time to talk, Jon explained that our main concerns is Emily sleeping in our bed.  That’s his main concern but I rather enjoy cuddling with my girl while my husband is at work anyway.  I am a cuddler and I value my sleep more than I value my child sleeping in her room.  I am the enabler and I have been called worst so…

*** This is a post for another day ***

At lunch we picked Emily up and got ready for our outing to the beach!

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Long orange bus ride, lovely BBQ, walk on the beach and Emily was ready to get on the first bus back to the hotel!

Once at the hotel, Jon went for a nap while Emily and I went to the pool.

In the evening there was a concert, Emily almost reached the door but was completely overwhelmed by the crowd and noise so we never made it in.

We sat in the hallway with other families who never made it in the room!

We joked about how fun camp should be in the evening for our kids so we could go to the bar knowing our kids were ok!

🙂

By 9:30pm we were all sleeping, nobody made it to the bar!

😦

Day 8

Emily went back to fun camp while Jon and I attended some sessions.  Anything touching legislation was not really helpful to us as it did not apply to our situation…  We are not living in that specific state or for that matter in that Country!

We jumped session and attended a session on surviving as a couple!  I am sure the title was much better worded than this but the general theme was how to survive as a couple.  The lady presenting was really interesting.  If I wasn’t comfortably sitting on my couch right now, I would walk upstairs to get her name but if I make it upstairs I might find my way to bed instead of back to the laptop…

We had lunch with Emily than attended a session on puberty, one on motor skills and an expert panel.

It made us think that maybe it is time to have Emily’s multiple organs tested again as it sounds like many child with her syndrome developed issues in their teenage years.  Emily hasn’t had a team of doctors for years now…

Something more to think about and organize.

Overall, I believe we’ve been lucky with Emily’s temper and health.  She doesn’t take medications at all.

Saturday night = banquet/dance!  Emily didn’t want to go! It took some time, we showed her the room and the “evil” balloons!  Emily is afraid of helium balloons.  If they are floating and moving on their own, they are creepy!  Those were creepy to her!

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We talked to Emily, explained that she could wear her new dress matching with her doll!

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We got her there and had a great time.  Don’t think it was easy.  We were in constant negotiation about leaving versus staying but overall we had a great time!

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I have a post on that evening called “I didn’t cry” posted on July 28th.

The next day, was time to wrap-up.  We attended the closing address, took group pictures, said our goodbyes and started packing.

We had an early flight on day 10!

I also talked to you about our flights in another post in early August!

So now you have it!

Our trip was amazing, the conference was great!

Meeting new people was really the main event, the focus of our trip.

We have pictures of Emily meeting so many amazing kids but I didn’t ask permission to post their pictures here so I won’t.

Emily asked Hannah if she wanted to be her friend using sign language!  Emily remembered the sign for friends!  The smile on Hannah’s face was priceless the way she looked at Emily was worth millions.

The way Allan and Emily looked at each other while standing a good foot apart…

The way Alex and Emily just instantly hugged…

How Celia decided to play catch this soft ball with my husband…

How little Leo looked at Emily turning a hoop on her finger!

How Emily danced with Shawnee, Rachel, Rochelle and so many others

How Emily asked Taylor and her “really cute” brother to take a picture with her… lol!!!

Even if those connections are not resulting in a huge phone bill, face time chat or unlimited texting requests, those are friendships that will last a lifetime.

I am a lucky girl, my daughter made friend!

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