mom in park: How old is she?
mom in park: Wow.
Yes she has some delays.
mom in park: Oh. Is she walking?
No, not yet. Someday.
mom in park: Huh. Will she catch up?
No, probably not. But I’m sure she’ll surprise us in other ways.
mom in park: She is cute…
Then I snapped this photo and thought about how I see her: flying out in front, her brother smiling behind her.
Swing on sweet girl. Aim for the sky.
One of the little secrets of parenting that no one likes to talk about is that we all want to win. I know, I know, parenting is not a competition.
But it kind of is. It’s a competition with yourself to have your kids turn out in the way that you believe is best for them. I’m not talking about making them something they’re not. (Though sadly, some people see it this way ).
I mean having kids choose to play a sport you played, or go to your alma mater or love reading as much as you do. For instance, my typical child loves language. He has a broad vocabulary, a sense of humour and grasp of sarcasm that exceeds his years and I love it. I’m a word person and I’m so pleased that he follows in my footsteps – #winparenting. I know others who are stoked that their children have grown to pay no heed to expected gender norms, and others still who love that their kids would much rather chase bugs than watch TV. win. win. win.
With Allie, my wins very different. They’re functional wins. A word! yes! A movement that means we’re closer to walking. Hells yeah. But my heart still aches when I think of all the little wants and wishes that will likely never come to pass in the way I imagined before.
Tell a book lover that there’s a chance your child will never have the capacity to read at all, or a runner that their child may never be surefooted enough to make it around the track. Those are the little losses that make receiving a diagnosis sting in the darkest parts a parent’s heart.
As one who tends not to take no for answer, I’m inclined to see those areas as ones that need special attention. They may never happen, but I’m not planning on letting them go without a fight.
As I was watching the inspiring opening ceremonies of the Special Olympics World Games in LA this past weekend, I was very taken by the stories of the athletes, the joy on the face of everyone in attendance and the history of the Special Olympics movement. Wow. I went through a serious amount of Kleenex.
There are countless athletes there this week with the same syndrome as Allie and they are kicking butt. Medals in gymnastics? Swimming? Amazing.
I was particularly taken by the Special Olympian Oath.
“Let me win. But if I cannot win, let me be brave in the attempt.”
It will never be me in that athletes parade, but I feel the parents in the stand live the oath too in their own way. In the face of every Mom and Dad cheering, supporting and reveling in the day, it was clear that getting from where they started to the games was a hard fought battle for the whole family. In making it there, they were already winners.
Parenting is a hard sport. Parenting a child with exceptional needs is harder.
We still want to win on our own ways. Sure, we’re told to expect less. But should we listen?
I think I’ll choose not to. Not after seeing those 6500 athletes march proudly into the stadium. Not after seeing those parents rejoicing in the stands.
From this day forth, I will bring all my fullest hopes to the parenting game. I will believe harder and push further and, if I find myself close to giving up, I will find a new way. I will not let others low expectations set the bar for what might be achieved.
Let me #winparenting.
Let me win. But if I cannot win, let me brave in the attempt.
PS: Two days after seeing the Opening Ceremonies, I enrolled Allie in the Special Olympics program. Did you know they start at age 2? She starts in the fall. I can’t wait. Maybe she’ll be in that athletes parade one day.
The long pause after people say Allie is adorable and ask how old she is. She is small for her age, so I suppose she could be mistaken for her developmental age. People are really thrown when their 10 or 12 or 14 month old is the same size and further along. They get uncomfortable. They’re not sure what to say. There’s a long, long pause before then say again, just how cute she is.
Sometimes I let them off the hook and tell them about WS and how it affects her. And sometimes I just don’t feel like explaining her. Sometimes I just talk about the weather or the park we’re in or the boy.
At the wading pool, she’s sitting, splashing, squealing. She’s smiling and happy. At that moment, it’s the most important thing about her.
I am definitely a fierce advocate. I strongly believe that spreading the word about Williams Syndrome is the key to inclusion and acceptance and so on.
But sometimes, I just want to let a little girl splash in a pool.
In the middle of that long pause, I hear her laughter, her little songs, her joy.
My words about her syndrome would drown it out.
Sure, people would learn more about what makes her different.
But they’d miss all the parts that make her special.
There may not be a plaque with Allie’s name on it, or a wing of a hospital named after her or all the Williams Syndrome benefactors that are rallying around our fundraiser.
There will likely never be enough zeros on our efforts to be considered newsworthy.
No hand shaking photos. No press release.
There will be a lot of hustle. A lot of late nights and early mornings. A lot of no. And I mean A LOT of no, I can’t help.
But there is also yes. An echoing chorus of yes. Each yes turning someone else into a yes, I’d love to help.
And $5 raised becomes $50, becomes $500 and so on.
Maybe it’s that cute little face. Maybe it’s the conviction of a parent that makes someone with no vested interest want to help.
Maybe it’s just human nature to be part of something – even if it’s small.
Doesn’t everything start out small?
Maybe the fund that just got that plaque and that wing started out small too.
And $500 becomes $5000, becomes $50,000 and maybe $50,000 becomes even more.
And with that comes awareness. Education. Research.
With that comes the best chance for the best life for Alma and everyone living with Williams Syndrome.
And that’s so much more rewarding than a plaque.
Besides, I’m pretty sure if someone made a plaque, I’d try and auction it off for more money…
Thursday the 4th of June is the last day for the 2015 Auction for Alma.
Stop by. Make a bid or a donation to support Allie and all families in Canada living with Williams Syndrome.
That Paul Simon knows some things about things.
“She said a good day ain’t got no rain. She said a bad day is when I lie in bed and I think of things that might have been.”
So one of my amazing sponsors gave some lovely kids books to The Auction for Alma. And one is called “Someday my Love” and it’s the story of a new mom and all the hopes and dreams she has for this baby girl.
Except she missed a few:
Like “Someday my love, I’ll hold you without all these tubes”
or “Someday, my love, I’ll hear you say Mama, and know the 2 year wait was worth it”
and “Someday, my love, we’ll go to a park that can accommodate your walker and you’ll play hide and seek with kids instead of stuffies”.
Plus “Someday, my love, you’ll have a friend”
And, not to give the book away, “Someday, my love, when you’re hair is grey and I’m gone, maybe you’ll know, in your heart, I did the best I could. And hopefully it was enough.”
Yeah, the book doesn’t go like that. The baby arrives, and a page later smiles, then talks and runs and skips. The little girl rides a bike and has besties and then a beau. She has a little baby of her own that the storyteller gets to hold and love like her child all over again. And then the mom is gone at the end, but the girl has a college education and a family. She’s not alone.
There are no bumps in the road. No glitches. No bad days, boo hoos or why me’s.
I used to think that would be our someday before, you know, just before.
Now our somedays aren’t the kind that people write books about. They’re the kind that make people give the pity face, and the deep sighs when they hear about you.
i know this because I’ve been telling a lot of people about you these days.
But as I picked myself up this morning and dusted myself off, I recalled that our somedays aren’t yet written. And with the right amount of hard work and love and luck, our somedays could very well exceed my wildest dreams.
I really hope the person in the auction who gets the books has all the somedays they read inside. But, please know that if you’re like me, and the somedays look a little different, there will be many, many good days that ain’t got no rain.
And nobody is gonna fault you one bit if every now and again, you lie in bed and think of things that might have been.
On this journey I’ve learned a few things. Ok, maybe a great number of things. But one of the most important things I’ve learned is that there are LOTS of pretty good days (even great days)…being a special needs parent isn’t all doom and gloom. But then, out of nowhere, when you least expect it, your heart breaks all over again.
This past weekend, the boy and I were out visiting local businesses looking for donations for The Auction for Alma. He remembers the auction from last year – we jumped into the bidding to secure the Lego set that had been in the house in the donation pile that he WAS NOT going to let go to another family. So bringing him on the walk seemed like a perfectly good idea.
Until he asked why?
“Why do we need to do an auction for Alma? Why can’t she ask for donations? What’s so special about Alma?”
And there it was. He knows there’s something about Alma.
He look up at me with those big old eyes and I didn’t quite know what to say. I got all welled up and took a deep breath and explained that when Alma was being created, all the pieces didn’t go quite in the right spots, like when you build a Lego set and miss a few pieces.
So she has a little trouble doing some of the things that other kids find really easy, like walking and talking, but otherwise, she’s just like everyone else.
Then he asked if that’s why she needs so many doctor’s appointments – something else I didn’t realize he’d noted – and I said “yes”.
And I had a little cry that I blamed on the wind. My heart broke over the need to have this conversation at all, and because there would be so many like it in the coming years. And that many of them would be far more complicated than this one.
The boy didn’t notice. He simply said “Oh, then I guess we’d better get a lot of donations so we can really help her out.” And then we kept walking and he jumped and skipped along.
I’ve learned that your heart breaks over and over again, at unexpected moments and in unexpected ways.
But when it heals, it’s a little bigger and a little stronger.
In the wake of every heartbreak there’s a little more room for courage and a little more room for determination and a little more room for love.
Do you have a shop you consider “your store”? For me, it’s Girl Friday here in Toronto.
I have a few days off and wanted to grab a new pair of jeans so I popped in today. I’ve been on the hunt for flattering “not skinny” jeans. But, having recently read a few articles that call my boot cut low-rise jeans “The new Mom Jeans” and not in a good way, I needed help to ensure I didn’t fall into buying the hottest jeans from the early 2000’s somewhere.
Enter Girl Friday. First – there is no possible way to leave with a bag full of clothes that are made for a woman 10 (or 20) years younger than you. The timeless cuts and style are great for just about anyone. There is also no possible way to leave looking like a fuddy duddy. Or a tom-boy with no taste. And, because they also do personal styling, when they hand you things to try, they fit – your body, your style, your taste, your budget…I could gush for days. As someone with a total inability to shop for chic clothes, I am so thrilled to have a store that keeps me looking great.
Anyhoo, despite just needing a pair of jeans, I once again managed to leave with a few smart looks that I’m so excited to debut when I’m back to work next week.
Here’s my #girlfridayhaul. Next time you need a little shop, pop by.
This post was in no way sponsored by Girl Friday, and the opinions here are strictly my own. I just love these guys and wanted to spread some around.
So being lactose intolerant doesn’t just mean no milk or cheese – it pretty much puts an end to anything creamy and delicious until you can find a decent work around. One that has eluded me for years is creating a simple lactose free tzatziki. I don’t really have time to cheese-cloth drain anything to the right consistency and with no lactose free Greek yogourt available in Canada I was out of luck until…
Finally, Liberté launched Lactose Free Greek Yogourt! I grabbed some on Friday night and yesterday was the first time I’d had delicious Greek delivery with the good stuff slopped all over the top. Amazing! And easy to make – def not a “why even bother to order takeout if I have to do all the work of making food myself” situation.
Today we plopped some of this Lactose Free Tzatziki on some Trader Joe’s Pita Crackers that we received for Christmas…heaven.
So if you’re looking to make a little Lactose Free Tzatziki, I found my this recipe here and just substituted my new favourite yogourt.
Upon rereading this post I figured I should let you know I was not in any way approached by Liberté for this post. I found this product all on my own and paid for it with my own money. If they should happen to come along and offer me free yogourt for writing such nice things, I’ll come back and let you know.
1 cup Greek whole milk yogurt
1 English cucumber, seeded, finely grated and drained
2 cloves garlic, finely minced
1 teaspoon lemon zest plus 1 tablespoon fresh lemon juice
2 tablespoons chopped fresh dill
Kosher salt and freshly cracked black pepper
BYOC: For some extra flavor, add some olive oil and some coarsely chopped fresh mint. Serve with crudities at your next party. Brush a pita with some olive oil and sprinkle za’atar on top. Bake in the oven until crispy and serve.
Recipe courtesy Claire Robinson, 2010
My friend, the talented director Rob Quartly, was pretty interested in Alma’s story, the lore around Williams Syndrome and her super cute smile. So he created this lovely little film about our family to help spread awareness of Williams Syndrome. Have a look and share with friends. One day, no will have to ask me to explain what Williams Syndrome is. Through films like this, I’ll have already told them.
[vimeo 108925607 w=500 h=281]