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What to expect when…

Over 15 years ago, when I was pregnant, I got “the” book everybody was talking about…

What to expect when you are expecting…

That was a nice book. I enjoyed it so as delivery time was getting closer we got the next book in the serie… I believe it was what to expect during your baby’s first year…. or something like that…!

What a useless book that was.

My baby didn’t follow the guidelines at all. Someone forgot to give her a copy of the game plan before she showed up to the party!!!

I hated that book!

By the time our doctors agreed that something was different about Emily and eventually gave us a diagnosis of Cri du chat syndrome … Emily had missed every single milestone in that stupid book.

We looked on-line to find information about Emily’s syndrome, the info we found was limited and outdated.

We talked to our doctors and therapists and agreed that we needed to look at Emily as her own person and not compare her to other kids (with or without a disability).

Over the months following her diagnosis, there were moments where I fell off the wagon… I looked at a child, a teenager or an adult and wondered if Emily would be like that.

Would she ever learn to walk? Would she be in a wheelchair like this guy, use a walker like that one, walk with a limp…

Would people stare at her?

Would kids shy away from her?

What about speech? Sign language?



So many unanswered questions.

We thought about going to the 5p- conference and although we were young and broke financially as most young families are at the beginning of their family life’s we would have figured it out.

We didn’t go for one simple reason.

I was scared of meeting other people with cri du chat syndrome. I was scared I would be looking for who Emily was going to be. I was scared my husband would find me completely overwhelmed and crying in a corner of the hotel.

I didn’t want to take that chance. I figured one day we (I) would be ready.

It took me 15 years.

From year to year, I knew I would have been looking at the people in attendance and wonder who she would become… Who we would become as a couple… How many parents are still together? How many kids are talking or walking?

So much information I would have tried to analyze and figure out the probabilities that Emily would be this outcome versus that outcome…

It took me 15 years.

Every year I looked at the info for the conference and came up with a valid reason not to go. Too far… Too expensive… It’s over monthend, I have to work…

This time, well it’s NYC!!!

Is it still far? Yes!
Expensive? Oh yes!!! Considering we are adding 5 nights in NYC before the conference…
Over monthend? Yes! But I have some great colleagues who are going to be just fine without me.

What’s different?

Well, it’s New York City!

It’s on our list of cities to visit one day.

And?

Well, I know my daughter and I know my marriage well enough to finally be ok with meeting all those wonderful families we’ve met on-line.

Thank you Facebook!

Maybe I had to do some growing-up before I was ready to meet our extended family!

Once again, Emily is pushing me forward, she’s ready to know she’s not alone with cri du chat syndrome. She’s ready to meet the other kids I showed her on Facebook.

She can’t wait to hear another teenage girl’s voice who sound like hers and discover that at 15, she is not too old to like dolls and Justin Bieber.

We are a week away from meeting a lot of new people and we are excited.

I no longer fear my reaction when faced with a wide range of outcomes. I don’t believe I will be comparing Emily to the other kids…

It took me awhile but I believe I’m ready to face the world, to talk more about Emily’s challenges and life lesson because I know and adore her…

Was 15 years too long?

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7 thoughts on “What to expect when…

  1. Ohh, THAT book. I gave it away after my oldest and he didn’t have anything “wrong” with him. I’m so glad I did, because when my daughter came around I would have been upset even more.
    Have fun at the conference. My family attended one about 10 years ago – it was very good and overwhelming. We had just received the diagnosis, was in the US that summer, and happened to be in the same state. I’m glad I went though, it was good info. I keep thinking we’ll go to another one when we are back in the US, but just hasn’t worked out.

  2. Those books never seem to deal with exactly what we need the answers to. there’s never enough anecdotal evidence to support the ‘facts’. I think we all flounder along and hope we are making wise decisions and choices for our children.
    Being ready to do anything is when you feel ready. You feel ready now.
    Have you thought about collating all this information? The anecdotal evidence of your experiences and Emily’s too would make a great companion book for others who share your concerns. Now that would be a book that is truly useful.x

  3. You inspired me to look up your daughters syndrome online as I had never heard of it-a lot of information out there on it, but sadly no cure 😦 Which leads me to my next comment. After reading your blog and seeing your daughter and the things you write about her, she seems to have come a long way and looks to be doing beautifully! I think that your choice to go to the conference is great-you are the only one who knows when you are ready for something like that. Maybe it took 15 years for it to be so, and that’s ok. We all worry about our kids. Especially at younger ages when their milestones don’t match that stupid book (I read it as well and was not impressed lol). And maybe at this conference, instead of you looking around the room and wondering what may happen, could happen, etc. other parents will be looking at your daughter and seeing how far she has come that they will go home feeling blessed and with renewed hope of “what could be” for their children.

    • Thank you! I believe Emily is an inspiration but there is no way for me to explain why she’s doing so well. I believe she has a potential and we, at some time, found the key to helping her learn and grow. I’m not sure what it was but I’m really glad we found it.

      If you want more info on cri du chat syndrome, you should look at my June 5th post.

  4. Not one person can tell you when the “time is right”. But today, you know the time is right! From our family to yours, enjoy your vacation. May your family bless others and others be a blessing to you. Jordan’s Mom, Emily’s classmate

      • Let the tears flow! Yes, Jordan is tall (although I think Emily may have her beat there) and sporty!

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