Williams Syndrome Wednesday: The Talk

by , on
Apr 23, 2015

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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.

A little “Day Off” shopping trip to Girl Friday

by , on
Apr 10, 2015

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.

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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.

Opa! Lactose-Free Tzatziki

by , on
Jan 18, 2015

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…

Lactose-free Tzatziki

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.

Lactose-free Tzatziki Crackers

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.

Easy Tzatziki – Recipe courtesy of Claire Robinson – Food Network
Ingredients

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

Directions
In a medium bowl, whisk together the yogurt, cucumber, garlic, lemon zest, lemon juice and dill. Season with salt and pepper. Chill.

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

Obi’s Film Debut

by , on
Jan 15, 2015

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.

Enjoy!

[vimeo 108925607 w=500 h=281]

So busy, so much to do, but at least Obi is happy!

by , on
Jan 14, 2015

Cutie

This is the little chicken is all cute and calm in the day – see above – but was ready to party at 1am the other night… [wpvideo v2srWVE6]

Williams Syndrome Wednesday on Thursday: Using my power for good

by , on
May 29, 2014

All the fundraising and workshop planning is going great. The auction closes tonight!!!

*http://www.32auctions.com/williamssyndromeworkshop*

But real life continues. Obi currently has a team of 14 doctors, specialists and therapists and this we added two more, which stung more than I thought it would… And her name came up for a preschool spot today. This specialized pre-school enrolls special needs and some ‘community’ kids (not special needs) and we’re going to check it out in 2 weeks to decide if we want to enroll her or stay on the wait list for another year.
Again, another moment of really realizing my little miss is a disabled child with special needs. I spend a lot of time compartmentalizing everything into immediate tasks and immediate needs and try not to spend too much time on the big picture – but this call with the preschool was very big picture.

Sometimes is all seems insurmountable. I had a little cry in my car after I parked at home earlier this week.

Then I got out, found 5 bucks on the street, and had a ‘it’s just life princess, ups and downs, ups and downs, suck it up’ moment.

While it’s true I can’t change that Obi has Williams Syndrome and I can’t change that there are gonna be days that it stings more than others, there are a few things I do.

I can raise awareness of Williams Syndrome. I can help connect families so we can share information and share the experience of living with someone with WS.

I can love that little chicken to bits so she never has to question her place in the world.

From the bottom of my heart, thank you to all the donors, the bidders, the sharers and the listening to me blather on incessantly about my fundraiserers. In doing all these things, you’ve used your powers for good too. For good and for Obi.

 

Williams Syndrome Wednesday: A shout Out to the Villiage

by , on
May 23, 2014

If you know me at all, you know that I am currently hounding people for silent auction donations and silent auction bids. I am a pain in the ASS. But I’m also committed to raising awareness for little Obi and that commitment requires funds. In this particular case, funds to help cover some of the costs for a 1-day educational day at Sick Kids in Toronto for WS families. A noble effort and a huge ton of work… but I see it like this: When you’re new to the neighbourhood – or in this case, a rare genetic syndrome – you’re not gonna meet people sitting in your house. You gotta throw an open house, invite them over and make some new friends. Or in this case, plan a work shop, raise a bunch of money, invite all the other people walking in your shoes and (hopefully) make some new friends.

I know, great idea right? But where is all this money going to come from? Enter “the village.” All the folks who are happy to step right up and help me raise my child. Not in a ‘change some diapers’ way, but in a “help me change the world” way.

People have been saying over and over again how amazing this is. I see myself as a Mum, perhaps a pretty proud of herself mum, doin’ what I gotta do for my little. But the rest of you…you’re not biologically programmed to help little Obi no matter what. And yet, you’ve stepped UP. Local stores where we shop regularly and businesses we interact with on a daily basis, big companies I have some kind of connection to (the whole 6 degrees thing), and random places I emailed out of the blue have been so very generous, and more than that, so gracious.

People have told me they are interested in her unique story, they are ‘taken’ by the video I shared with a number of kids, I’ve touched their hearts and it’s stories like ours that give them purpose. Wow, that is a whole lot of nice things to say. People I know have reached out to their contacts, pulled in favours, pulled strings, and donated out of their own pockets.

They have just helped. And of course I am grateful for the donations, but more than that, I’m grateful that this process is introducing me to a world that is embracing Obi. People are taking the time to ask questions, do research and learn more about Williams Syndrome. I could never have imagined the response I’m getting and it makes me feel good, deep in my Mom heart. I love that little chicken, and I want her to be able to find her way. But I almost feel that with so many people lighting the path, everything is going to be ok.

That is, above all, what I am most thankful for. Thank you to the village that is not just helping my child, but helping me in the process.

There are now too many sponsors to mention – some of which haven’t even been added yet. So if you want to see who all the great people and brands who are participating in Obi’s silent auction, head over here.

Maybe you’ll even find something that makes you smile.

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When the going gets busy, the busy get slow-cookin’

by , on
Apr 30, 2014
mommydo.com | Melt-in-your-mouth slow cooker ribs | quick and easy and delicious ribs you make in your crockpot

I’ve been crazy busy these past few *gulp* months. I even broke my own smug ‘takeout only once every 2 weeks rule’ last week and had takeout (or takeout leftovers) EVERY NIGHT.

So yesterday I hauled out the slow cooker to help pull me out of my ‘too busy to cook, to smug to eat any more takeout’ blues and try the recipe that produced these succulent beauties…

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Ribs? In a slow cooker? Oh yes I did.

The meat was from our local shop Rowe Farms (so good) and the recipe from Food Network magazine.

Easy. Seen here with oven fries and my sisters “secret” (bag of coleslaw stuff and Kraft Coleslaw dressing). WAAAAAYYYY better than sad leftovers.

The only hard part is hanging around waiting 6 hours while your house smells like a BBQ joint.

Enjoy!

Hoisin Baby Back Ribs

Ingredients1 cup hoisin sauce
1/3 cup rice vinegar (not seasoned)
1/4 cup honey
2 tablespoons low-sodium soy sauce
2 tablespoons Sriracha (Asian chile sauce)
1 2 -inch piece ginger, peeled and finely grated
3 cloves garlic, finely grated
3 2 -pound racks baby back pork ribs
1/2 cup ketchup
2 scallions (white and light green parts only), chopped
Coleslaw, for servingDirections

Combine 1/2 cup hoisin sauce, the vinegar, honey, soy sauce, Sriracha, ginger and garlic in a 6-quart slow cooker. Add the ribs and turn to coat. Cover and cook on low, 6 hours.

Preheat the broiler and line a rimmed baking sheet with foil. Transfer 1 cup of the liquid from the slow cooker to a medium bowl; whisk in the remaining 1/2 cup hoisin sauce and the ketchup. Transfer the ribs to the prepared baking sheet and brush both sides generously with the sauce. Broil, bone-side down, until browned and bubbling, 3 to 5 minutes.

Transfer to a cutting board and slice into individual ribs. Top with more sauce and sprinkle with the scallions. Serve with coleslaw.

© 2014 Television Food Network, G.P. All Rights Reserved.

Read more at: http://www.foodnetwork.com/recipes/food-network-kitchens/hoisin-baby-back-ribs.print.html?oc=linkback

 

Williams Syndrome Wednesday: Hand Claps

by , on
Apr 23, 2014

The little miss has started clapping her hands, initiating peek-a-boo and ‘saying’ a couple of words. We think she says “hi”, “Daddy” and “done”. Still not sure if they are intentional words or just sounds that kind of sound like words but regardless, it’s progress.

It seems like Obi’s development plateaus then leaps forward – all three of the above are a big, big deal. It’s hard to find the time amidst all the management and logistics and worry and fear to celebrate. But these week, we make time.

The little miss claps to show pleasure, plays a game to laugh and make you laugh and is beginning to communicate with her little voice and not just grunts and a couple of signs.

It’s amazing! And I’m loving every minute of it.

 

Williams Syndrome Wednesday Really Late: Little Heartbreaks

by , on
Apr 14, 2014

I’ve had 2 rather unexpected moments – both really teary and both out of the blue. Sometimes I forget that I live this new and unexpected life. It’s becoming a normal life. Doesn’t everyone else walk in the door and find they’re forgotten an OT appointment and find the therapist halfway through walking lessons with their babe and her caregiver? Isn’t everyone up late scouring the internet for bouncy chairs for developmentally delayed sensory seekers who like you bounce? Did you not take a moment today to wonder if integrated or specialized SpecEd would better suit your child?

I did all these things and didn’t think twice about them (till now I guess, but whatever). I did however, find myself hyperventilating at a funeral last weekend when I saw my great aunts daughters grieving her loss and realized someday that will be Bub and Obi grieving me except she won’t be able to understand where I’ve gone. Oh yes, that was not pretty.

Then this past weekend I gave my cat up for re-homing. He has had a problem with kids since the boy was born and with the girl taking up more and more of my time and the cat having to be kept separate from the kids, kitty just wasn’t getting the love and attention that he deserved. So that was a hard decision but one I feel was ultimately best for him.

Still, standing at the counter, handing him over, I couldn’t help but feel how I’d let him down by my inability to care for him. Then, in the next moment, I was overcome by the feeling that one day I’d have to do the same for Obi – I’d have to arrange for someone else to take over her care as I would no longer be able to give her what she needed. I think I had an actual panic attack. My heart was racing. I couldn’t really catch my breath. I can’t imagine what the person I was giving the cat to thought. I had to say a quick goodbye and make a hasty retreat to go sob in the car.

Is this was lies ahead for us? It’s impossible to say. Just as it’s impossible to know what kind of education is best for Obi until we get there. Or whether any bouncy chair will do the trick, or if I will go before she does. What lies ahead is a thousand little celebrations of things I might have taken for granted in my old life, and a thousand little heartbreaks too. Some that will sneak up like these two, others that will be there the whole time, wounds that will barely heal before they break over again. Big sobs and lumps in the throat. Big whoops of joy and slight warmings of the heart. Just like any other normal life, I suppose. Any normal life.

 

 

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