baseball | Lessons from my daughter

Lately, my blog posts haven’t been as much about Emily’s syndrome…

They have been about Emily.

Our trips, make-up, fashion, art and so much more…

I didn’t avoid her syndrome…

I just, sometimes, forget about it!

It feels good to forget about it!

Than, out of nowhere, it hits me.

Emily will be 17 in June. If she had been in school in Quebec, like I did, this would mean, going to college in the fall of 2015.

When I was 17, I moved over 1000km away from my home to pursue my studies.

I had a boyfriend and had my driver’s license.

I could manage groceries, pay bills, use public transportation and study hard. I wasn’t a good cook but never starved.

I learned to cook eventually.

So, sometimes, I forget about Emily’s syndrome.

I love seeing her for who she is.

I love remembering our vacations and thinking about the next one.

I love helping her get ready in the morning, helping with her hair and trying to teach her about skin care and make-up.

What I even love more is when I ask if she needs help with something and she says no.

Over the last year, she has learned to put her dishes in the dishwasher, start the dishwasher, makes tea, start her shower on her own, start the washer and dryer, comb her hair and even made her own pony tail…

She played baseball at the Rogers Center in Toronto and slowly started to ride horses without a horse handler 🙂

Her reading is improving and she’s interested in learning how to cook!

This week she started making her bed!

Most of those things are quite insignificant for “regular boring” kids but when you have an exceptional daughter like mine, those are spectacular achievements.

Slowly but surely, she is getting older…

Slowly but surely she continues to prove that her diagnosis of “not walking, not talking, not feeding herself, not showing emotions, not recognizing us…” was more of a worst case scenario rather than a sure fact.

Some new babies being diagnosed with cri du chat syndrome, are still being told about all the things they will never do. Some are being told they will not live to be 1 year old.

I want the world to know about Emily. About her syndrome and about her successes.

My girl is awesome and sometime I prefer to talk about her awesomeness rather than dwell on her (and our) struggles.

It makes me happy and I wish it brings happiness and hopes to parents everywhere. Regardless of the diagnosis, what your child will achieve will bring you joy. Regardless of the struggles, you will find happiness in the smallest achievements if you allow yourself to see them and celebrate them.

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.

🙂

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!

Look at those smiles!

We made first page of the local newspaper

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?

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…

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. 🙂 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.

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!

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…

…..

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!