Some experiences you just can’t buy!

Yesterday afternoon was magical!

It was magical for Emily, for her team mates from the Field of Dreams, for all the parents standing there and taking pictures and making videos, for the volunteers, for the Hub City Brewers and for the Blue Jays organization and former players!

Yesterday was something money can’t buy for our kids with various ability levels.

Look at this video of Emily!

http://youtu.be/UyDdPl_QgLA

If you are new to my blog, you are probably thinking that Emily is a pretty poor baseball player.

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That’s ok! I get it….

The guy pitching was close to her, he pretty much gave her the ball before she kinda ran to first base…

Allow me to help you see the magic in that short video.

Emily was diagnosed with Cri du chat syndrome in October 1999 when she was 15 months old.

At the time, we were told (amongst other things) that she would never walk, understand us, recognize us, communicate with us, her brain & body would never function properly.

Now… remember that video!

She is exactly where she needs to be, standing on her own, swinging that bat around to warm-up, keeping her eyes on the pitcher and on the ball. Her eyes are telling her brain that the ball is coming and her brain is telling her arms and hands to move at the exact time required to hit that ball. Once she’s made contact with the ball, she puts the bat down and runs to first base. At first base, she high fives…. Roberto Alomar!

Who’s Roberto Alomar? Come on… really? You don’t know???

Here’s his Wikipedia page: http://en.wikipedia.org/wiki/Roberto_Alomar

So… now that you know all the things Emily would never do and that not only she’s awesome on that video, she’s also playing baseball with former Blue Jays player and Hall of Famer Robbie Alomar….

Let me ask you again, how is that video?

I admit that my voice is annoying but overall that video is amazing!!!

The afternoon was beyond anything I could have imagined.

Look at Emily’s team!

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Look at those smiles!

We made first page of the local newspaper

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I wished the newspaper would still let you read it on-line for free, I would have love to give you the link to the article because it’s great. They talk about the Blue Jays players but they mostly talk about our players.

See these guys with Emily?

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She was chatting with them while the “Blue” were at the bat!

The guy on the left is Sandy Alomar Sr. http://en.wikipedia.org/wiki/Sandy_Alomar,_Sr.

Later on when he was signing Emily’s new Blue Jays t-shirt, I asked him what they were talking about earlier…

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Turns out Emily was telling him about hockey and Justin Bieber….

LOL…. she talked to a former MLB player about her favorite sport to watch….. Hockey!!!

How awesome is that? Talk about full honesty, no pretenses, no BS… just 100% Emily truth.

In the newspaper article, they mentioned how one of our player asked Duane Ward if he plays Super Mario. πŸ™‚ The guy won 2 world series but our player wanted to talk about video games … and apparently, Duane is not really good at video games.

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3 years ago, Emily lasted 15 to 20 minutes a week at baseball than wanted to go home, Now she stays for the hour and a half. She gets there, says hi to Lexie, Jacob, Pascale, Taylor and so many more… She gives Brent a hug, says hello to Pat (the field of dream pitcher) than look for Mikey. He’s number 7 for the Hub City Brewers and he is Emily’s favorite guy. Not sure why she picked him… but over the last 3 years, that guy has allowed her to talk about Justin Bieber as much as she wants. He is helping her learn to catch the ball… that’s a work in progress and he is not giving up. In previous years, when Mikey was not there, Emily used to be completely lost but now she can go see another player and manages just fine.

When people look at our kids they see their differences, they see their disabilities.

Yesterday on that baseball field, I only saw abilities…. abilities of various levels. Everybody at the same level, it’s easy when the game is just a game. Everybody went to bat and went around all the bases. Nobody counted points, not because they are all winners but because it was a game! It was fun!

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Grey or Blue team didn’t matter, they all cheered for each other, they all high fived each other, they all laughed and ran and played!

Yesterday was the kind of day you can’t buy for our kids, this is the kind of day that happens only when a group of amazing people get together and believe in a common cause…

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Thank you to all that made that day possible!

Yesterday, Emily’s baseball team was invited to participate in a 90 minutes baseball game with some former Blue Jays that were in town as part of Blue Jays Honda Super camp

http://toronto.bluejays.mlb.com/tor/baseball_academy/honda_super_camps_en.jsp

Emily’s field of Dreams team exist because of the Hub City Brewers, their wifes and girlfriends, their friends and some other great volunteers…

Those guys, all have jobs, they train with their team, they play games from Spring to Fall and spend 1.5 hour per week with our kids, playing baseball. Making each and every single one of them feel like a pro baseball player.

http://www.hubcitybrewers.com/field/

The opportunity to play with the Blue Jays was made possible by an alignment of stars and the contribution of not only the Blue Jays and the Hub City Brewers but also the involvement of Baseball Canada’s challenger program.

http://www.baseball.ca/eng_doc.cfm?DocID=521

Thank you to all of you!

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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