5p- | Lessons from my daughter

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?

Back when Emily was diagnosed with the Cri Du Chat syndrome, we were told that we needed to be tested as well to determine if we were carriers.

The thing with genetic anomalies is that you can be a carrier and not have any clues that you are! If whatever piece you are missing is attached to another chromosome, you will be just fine! You will go your whole life not knowing.

So, once Emily was diagnosed with CDC syndrome, we were explained that she was missing part of the short arm (p) of her 5th chromosome. Another name for her syndrome is 5p-

With such diagnosis comes more genetic testing but this time for the parents.

Being tested is simple enough, it’s just a little needle for some blood work than it’s waiting time…. that’s the difficult part.

That’s the part when you try to convince yourself that will not blame either you or your spouse for your child’s condition. To be honest, I was extremely scared of being a carrier and even more scared that my husband was because I wasn’t sure I was a big enough person to not assign blame. I wasn’t sure my young marriage would survive one of us being a carrier… I was worried about my future, my family, my life….. That’s a lot of worrying for a 24 year old mom…

We are not carriers…. it was a relief to know this but it was also a really confusing moment for me as I had to learn to live with the fact that somehow, while creating a new life I had lost a tiny piece of chromosome and that tiny piece meant that Emily would forever be struggling … How did I manage that???

No one knows!

When the genetic counselor told us we were not carrier, they also added that if we decided to have another child, we should contact them and that my pregnancy would be followed closely… I couldn’t quite understand why they wanted to do that as we were young, healthy and not carriers. Our odds at the time were estimated at 1:50,000 to have a child with CDC… What were the odds to have a second one with CDC?

But never mind the odds….. if my baby was tested and had CDC…. what then?

…….

What was the point of this testing? We would have to decide if we were keeping our baby??? Really???

…….

What an interesting idea…

Were we supposed to test our baby than decide to not continue with the pregnancy should the baby has CDC?

Were we supposed to test our baby than decide to continue the pregnancy…

Did we want to make the decision?

Was there even a decision to be made?

…….

I adore my baby girl with or without her syndrome… I would not trade her for all the money in the world… I will give her the best life she could ever have…

How would I live with myself if I decided to terminate a pregnancy because my future baby would be like my first one??? My first one is the love of my life why would the second one be any different?

Why would I be tested if regardless of the test results I would keep my baby?

What was the point?

…….

In the end, we didn’t add to our family… but in the meantime, when considering having another baby we decided that we would not contact the genetic counselor, we would not get tested and whatever happened would be ok with us!

…….

From the outside, it is easy to judge, it is easy to tell someone that to risk having another heavily disabled kid is not a good idea…

From the outside, it looks easy to say that a pregnancy should be stopped…

From the outside, whoever is looking our way knows nothing. Absolutely NOTHING!!!!

Unless you’ve walked in my shoes, bug off! Keep your opinions to yourself!

I will never even consider terminating a pregnancy because my next baby could be as extra-ordinary as the first one!

I have to live with myself, how could I justify doing something like this?

……..

Next time you find yourself on the outside looking in, whatever it is you are looking at…… remember that you probably don’t know half of the story so don’t be so quick to judge. How would you like to be the one being judged?