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We looked on-line to find information about Emily’s syndrome, the info we found was limited and outdated.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.
Well, it’s New York City!
It’s on our list of cities to visit one day.
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?