world down syndrome day

The girls and I spent some time this afternoon preparing our #CoffeeOnRicky gift cards. You can read the story behind the hashtag here.



This year I had two dollars loaded onto 21 gift cards with the idea that the kids and I would drop there here and there as we made our way around town this week. Tonight we took a small handful with us on our weekly library visit and stashed them here and there.



The girls and I giggled over my favourite Ricky stories as we stuck on the labels and stuffed the envelopes. I love so many things about this project, it makes me incredibly happy and sad at the same time. I hope whoever happens to find a #CoffeeOnRicky card this week an tell how much we all loved him and  feels a little bit of his beautiful sunshine.

play ball

Yesterday Mike and I had the extreme pleasure of being guests of the Down Syndrome Association of Hamilton in the Community Clubhouse at the Blue Jays game. The DSAH had been selling tickets to yesterday's game as a new fundraiser for them. In addition to use of the Jays Care Community Clubhouse, one of their members.... the now world famous I'm sure..... Cowboy Dave got to throw out the first pitch.



If I had to sum up the day in one word...... Wow. Just wow!

The whole day was just an incredible experience and Mike and I thank the DSAH for having us along. Specifically we are thankful for our wonderful friends John and Tracy. Tracy and I have known each other for close to twenty years, we met at work and a transfer separated us for a long while, but the past few years have found us back together. I met John through Tracy and the moment I met him I liked him instantly he's just one of those guys, you know. Working with Tracy I had a front row seat as they expanded their family to include serious little Natalie and Rockstar Ryan, who followed along shortly there after.



Rockstar Ryan is the push behind John and Tracy's involvement with the DSAH. Ryan was born with Down Syndrome and while that may have been unexpected John and Tracy didn't miss a beat. I know it couldn't have been half as easy as they made it look, but they certainly jumped right into being the best parents and advocates they could be for their son. While Ryan may have brought them to the organization now that they're there they feel an obligation to put forth their best effort for all of DSAH's members and that's the kind of thinking and dedication that inspires me.



I'd like to talk for a moment about our experience being in the Jays Care Community Clubhouse. First the staff. Absolutely top notch. They were pleasant, courteous and engaged with our entire group. The Jays organization have much to be proud of there. Now as a baseball fan I am completely fascinated by Major League pitchers. Mike will tell you I spend most games dissecting the different pitching styles on display. Casey Janssen is a particular favourite of mine, that guy is intense when he is pitching, but despite my love of MLB pitchers Sergio Santos was not really on my radar before he walked into the box yesterday morning.

   

That is Sergio Santos with a few of the DSAH members, including the now world famous Cowboy Dave there on the far right in the plaid shirt. Sergio could not have have been any more gracious with our group. He posed for pictures, signed autographs, and spent time chatting and visiting with the DSAH members and their families. Sergio wears number 21, a significant number in the Down Syndrome community. The Jays couldn't have sent a better representative to the box that day.



Cloud nine would not have been high enough for these guys. The thirty minutes or so that Sergio spent with us yesterday morning sealed the deal, making Sergio Santos my new favourite Jays player and I think you would find a lot of the people in that room share that sentiment. Not long after he left the Jays Care Community Clubhouse he would be meeting Cowboy Dave down on the field to catch the ceremonial first pitch that Dave tossed out. Cowboy Dave of course rocked that first pitch, even if they wouldn't let him pitch from the mound... not that he didn't try to convince them... and many down at the field told him that he did a better job than Fifty Cent, not that anybody in the room was surprised by his epic performance.



That's Cowboy Dave walking off field with Ace after rocking that first pitch. He came back up to the box to a well deserved round of applause in additions to lots of hugs and hand shakes. I feel very lucky to have been there for it. Yesterday was emotionally overwhelming for me in many ways and several times I found holding back the tears was near impossible. There is never a moment when I do not miss Ricky, but yesterday it settled into my chest like an incredibly heavy weight. I so happy to see the members of the DSAH enjoying this incredible experience, but obviously heartbroken at the opportunities that Ricky just didn't have.



And that brings me to why were Mike and I there. Well in a word we're being wooed or courted if you will. John has been very open about his interest in having either Mike or myself or both of us join their organization. He has big dreams for the DSAH and he's looking to load their organization with "doers". I guess the word is out that we fall into that category. Mike and I have taken the invitation very seriously and it's something we've been discussing the past few days. John is a crafty recruiter because after spending the day with the fine folks from the DSAH the following conversation happening in our kitchen...

Mike: I hate to say it, but we can't not get involved now.
and before I have a chance to respond
Mike: Well actually, I don't hate to say it.

There was never any doubt and I'm fairly certain JC knew that. 

Oh yeah and the Jays won too!

world down syndrome day

Ricky didn't need much to make things right in his world.



He had General Hospital. He was a pretty serious Luke and Laura fan.

In addition, of course he had his Soap Opera, Star, and National Enquirer magazines. He couldn't read, but he'd pour over the pictures for hours.

There were the jigsaw puzzles. All neatly taped together at the back when he was finished so he could keep them.

He had his cowboy hats and boots. If the family had ever decided to pack up and move to a dude ranch he would have been in absolute heaven.



 There was grass to cut and wood to stack. He and my Grandpa actually took really good care of each other after my Grandma passed away.

He had all of us. Family was the tops. The absolute best thing ever. He was always up for a visit or even better an adventure. Or the absolute most best thing ever..... an adventure without his Dad hanging around.



Ricky loved two dollar bills and he loved going for coffee. Hey Son! He'd call to my Grandpa flashing his cash... not that he ever paid for coffee, mind you, but still. So every day he and Grandpa would head out for coffee and a stop by the grocery store to flirt with every cashier they came across.

I spent a lot of time today wondering how I could best commemorate World Down Syndrome Day and Ricky. You see here's the thing about Ricky..... living with Down Syndrome was one small piece of him... the most important part is that this family saw him grow into the very best version of himself. He is very much loved and dearly missed by all of us. So this is what I did...



Since two dollar bills went the way of the dinosaur I bought a handful of $2 TimCards and left them at our local Tims. I hope these cards bring a little of Ricky's sunshine to whoever finds them.

ricky

How can it possibly be twenty years since I've seen your face? Miss you every day. xo

friday flashback - missing ricky

I took this picture of Ricky when I was about 17 or 18. I was taking photography that semester and I clicked this with the Pentax MG SLR my Grandpa had given me on permanent loan. It was one of the ones I ended up picking to be part of my final project. I can't remember the mark I got on the assignment or in the class and it doesn't matter because this is one of my most favourite pictures. Ricky always enjoyed mugging for the camera so it wasn't always easy to get a "nice" picture of him. To me this picture is really Ricky. He looks relaxed, happy and content. A few years ago I finally got around to framing it and ever since it's sat in our living room grouped with some framed pictures of the girls.

It hurts my heart when I think of the important people who are gone from my life that never got the opportunity to meet these beautiful girls of mine. My Dad, my grandparents and Ricky. I do my best share my memories of them with Abby and Maya. Maya's still a little young, but Abby seems to have developed quite a connection with those she's never met. She quite often talks about "her Uncle" Ricky which always causes the tears to well up in my eyes. I can only imagine how much they would have enjoyed each other's company.

Something we are not short on in this house is stickers and Barbies, but that's a story for another time. Easter, Christmas, Birthdays and sometimes just because it's Tuesday somebody is always giving my kids stickers. The other day I happened to notice one of the Valentine's stickers had made it's way onto Ricky's picture. Placed there by Abby against the edge of the frame the heart shaped sticker reads, missing your smile. I asked her, with tears in my eyes and a lump the size of Texas in my throat why she'd stuck a sticker on Ricky's picture. She answered. "because I like Uncle Ricky. He's always smiling at me from the picture." And for the eleventy billionth time since my motherhood journey began, my heart exploded.

friday flashback - another ricky story

I have a huge collection of pictures. There are endless photo albums staked in my closet and at least that many burned to disc by my desk. Friday Flashbacks could go on forever if I simply posted a picture once a week. Some of the pictures I have date back to when my Mom was a young girl and some earlier than that.



This picture of a young Ricky is one of my favourites of him. I have no idea where it was taken. I would assume somewhere on the farm, but maybe my Mom would know. I like it because it seems like an "artsy" kind of shot when compared to the rest of my Grandma's pictures which are very often shots of assembled groups. The kids on front of the Christmas tree or in front of the house in their Easter best or at a wedding.

Another reason I love this picture is because of that face. Ricky made that face his entire life. Usually when he was disagreeing with you. He would lean in, cock his head to one side and watch you out the corner of his eye with hands on hips. Ricky was as stubborn as the days is long and as I got older and became more involved in his care we had many a standoff. Much like the kids he pushed to see where the limits were and how long my patience would hold out. I remember Ricky staying with Mike and I while my Mom and Grandpa were visiting family out west. I suggested to Ricky it would be a good time for him to have a bath. For whatever reason, he strongly disagreed. And there we stood at a crossroads, neither of us willing to give up our position. It didn't seem like this was an argument I could win because as much as he was childlike in some respects he was also a grown man. So tucking him under my arm and depositing him in the tub was not going to be an option. I know he must have looked at me that night, his body arranged in that familiar pose, his head cocked to the side waiting for me to admit defeat, but back then I could be just as stubborn. Mike was there that night as well as my brother and a friend of ours. So I suggested that there was two ways we could get this done, he could get in the tub himself or I'd have the three guys watching hockey in the living room throw him in. Wisely, he chose option number one.

friday flashback - won't get fooled again

A million years ago, back before we had a house and kids there was money to be had. And we used that money to do things like go on vacation. Can you imagine? Not that they were fancy vacations, just a simple cottage that we rented with as many friends as we could cram into it. On most of those cottage trips we would take Ricky with us. Ricky loved going to the cottage even if he couldn't stand the feeling on sand on his feet. So much so that he would leave his sandals at the waters edge, facing back up the beach, so he could rinse his feet off and step back into them when he was done swimming. Not that it helped much so he'd spend endless amounts of time brushing, blowing and shaking sand out of them. Even still he was happy to be there. Happy to be independent of my Grandpa, his father. Happy to be hanging with the younger generation. And we all enjoyed his company.

It was during one trip to the cottage that an incident occurred. One that will be forever etched in my memory. One that never fails to make me smile whenever I bring it to mind. Ricky was a real creature of habit. He had very specific ideas (read he was stubborn as a mule) about how and when things should be done and Lord help you if you attempted to deviate from the plan. So when Ricky decided it was time for bed, well he just expected we'd all pack up and go to bed. Now this is not an idea that went over well in a cottage full of twenty-somethings with a fridge full of beer and a fire burning in the fire pit. It necessitated a quick conference between him and I where I explained to him that if he was tired he was welcome to go to bed, but he was going to have to stop coming out to the fire and sending everyone else to bed. After that he headed back inside, presumably to go to bed.

Fast forward a little bit and I'm headed inside for a beer run. To get there I must walk past the large picture window that looks into the living room of the cottage. The stereo is on inside and as I get there Won't Get Fooled Again by The Who begins to play. Out of the corner of my eye I see movement inside the cottage, I pause to check it out. It is Ricky, by himself in full air band glory. There are fist pumps, air guitar, and many many moves that are more than vaguely reminiscent of Elvis (Ricky's ultimate hero next to Hulk Hogan). Quietly I called everyone else over and we all huddled, transfixed at the window watching the awesome display. Silently I cursed not having my video camera or even my camera with me. Both were safely inside, going past Ricky the only way to get them. This was something that would live on in our memories only. He danced and performed for the entire song and when the end arrived and he made his bows to the imaginary audience Mike called in the window, "whatcha doin' Rick?" I wish I could adequately describe to you the look on his face when he realized we'd all been at the window watching the show. There was shock and a little bit of embarrassment, but I think overall he enjoyed the attention.

That was definitely one of our last trips to the cottage. Ricky passed away not too long afterwards and before too much longer Mike and I were married with a mortgage. We never rented that cottage again. It did come up this summer, with Abby being away with my Mom, the possibility of renting that cottage again. There's lots of memories there, I wonder if it's good to go back or should we make new memories somewhere else.