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.

 

 

Williams Syndrome Wednesday: Permission to Let It Be

by , on
Apr 4, 2014

Sometimes it’s nice to hear someone say “Things are ok as they are.” This week’s dose of chillax came from the special feeding clinic that baby Obi now attends.

Feeding has been a huge struggle right from day one. We finally got her eating pureed baby food at about a year. We’ve been trying to increase textures but not having any luck.

And do you know what the experts said? Let her eat purees. Thicken them slowly over months and months. Stop pushing her to move ahead faster than she can.

It’s ok.

You know, it’s not ok for me sometimes. It’s not ok that all her friends are running and starting to talk and growing so big and she’s still sitting tall, hanging out, screaming from time to time and eating purees.

It’s not ok for me, but she is perfectly happy. She’s doing what she’s doing. She’s loving life.

You know what else they said?

It’s ok.

It’s ok that you’re disappointed that things aren’t going as you planned. It’s ok that you feel sad, jealous, frustrated…whatever you feel.

They also said she looks good, healthy, feeding well, eating in step with her current development.

So I’m gonna stop trying a million ways to get her to eat what she’s not developmentally ready to eat and I’m just gonna feed her what she likes. Pureed food, some puffs, some pasta stars, some mum mum crackers and I’m gonna cut myself some slack.

And I’m feeling OK about that.

Williams Syndrome Wednesday: 1 in 20,000 is the lonliest number

by , on
Mar 27, 2014

Yeah, I know, I’ve missed a few Wednesdays. I totally had ‘that thing’ happen. The one where you have something on your mind and you really want to say it – but it’s such a big friggin’ downer for you and everyone else that you don’t say it. And then, as it’s all you want to say, you can’t think of anything else to say, so you just say nothing.

Yep. I’ve said nothing these past weeks because I don’t want to actually commit these words to print “it’s just not the same”.

There, it’s out there now.

I have had a vast number of people remark about how the motherhood journey is a common experience (and if you’re one of them, I am SO not calling you out in particular) and the more I hear it from Moms – typical everyday Moms – the more isolated it has been making me feel.

Partially this is my fault as I tend to gloss over the sheer logistics of tending to Obi’s needs. I am also guilty of attempting to adopt a normalcy to her condition which then leaves people without a sense of how far from normal her first year has been and what that has meant to our family. Even as I’m typing I’m cringing at my own words – really, what is NORMAL anyway?

But, truth be told, as someone who parented a typical child before Obi came into our lives, having her is just not the same as a typical kid. The “hopes and fears”, the “good days and bad”, the “just trying to get by sleep deprived” and the “constant worry” aren’t the same.

I hope my child will speak. I fear my child won’t walk, or eat solids that aren’t pureed or every be invited to a birthday party not thrown by someone who is like family. On good days I have been able to get food into her, I have not missed an appointment, followup, received bad news or thought too much about her future. On good days we learn we don’t have to come back to a particular specialist for a year – unless we see any of a set of scary symptoms. On bad days we learn she isn’t seeing well, had flunked her hearing test again, her calcium levels are rising. On bad days we get referred to rule out potentially debilitating seizures, get the run around for therapy funding, realize we have no idea what the future holds for her. On bad days people ask what’s wrong with her, if she’s going to be ok, if she’s ‘healthy’, if she’ll ever walk or talk and I have to answer we hope so.

In 12 months she’s slept through the night 10 times. The three months before that, she didn’t wake up. The rest of the days she got between 3-5 hours of sleep between 8 pm and 8 am. We take turns.

With my typical child I worried about eating, sleep, development, if he should have screen time, if he was being spoiled, was he likeable. Now I worry about hearing, sight, mineral levels, blood pressure, muscle tone, tippy toes, W sitting. I worry that she will never eat a cheerio, that she will be bullied, abused, invisible. I worry that I won’t live long enough to take care of her as long as she needs care, that she’ll wind up in poverty somewhere, that, once her brother has a family of his own, she’ll be alone.

I just worry.

I manage her schedule of what will soon be 12 doctors, specialists and therapists. Some she sees by-weekly, others quarterly, others yearly. I keep track of research, minute shifts in development, growth, eating habits, sleep habits, tests, procedures and behaviour that might indicate a need to see one or all of the 12 professionals that tend to her care.

I find foods to try, toys recommended by therapists, routines that might help promote sleep, cups she might hold, groups that will welcome her.

I work. I parent another child. I cook. I think about cleaning…

I love her without question and I do all of this and would do 10 times more…if required.

I’m not amazing, or a super hero or anything like that. I’m just doing what I need to do. Or rather, what she needs me to do.

I’m a mom. And I know we mom’s are a time a dozen.

And it IS true that, like others moms, I have hopes and fears and dreams for the future.

But it’s just not the same.

It’s just not.

 

I never really think of St. Paddy’s day as Stew day

by , on
Mar 18, 2014

But I did see stew come up a lot through the day yesterday. If you’re like me, and are now craving stew, try this recipe for Italian Beef stew from Cooking Classy. It’s March 18 so you don’t have to worry about the non-Irish part… I made it last week and it was super delish. I, of course, didn’t take a picture because we’re busy like that these days. But I’m sure the one I’m about to ‘share’ is better than I would have taken anyway.

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PHOTO: Cooking Classy

Italian Beef Stew

Prep Time: 25 minutes

Cook Time: 4 hours, 30 minutes

Yield: About 7 – 8 servings

 

Ingredients

  • 4 medium carrots, chopped into 1/2-inch thick pieces (2 cups)
  • 3 stalks celery, chopped into 1/2-inch thick pieces (1 1/2 cups)
  • 1 large yellow onion, diced
  • 3 cloves garlic, finely minced
  • 5 Tbsp extra virgin olive oil, divided
  • 2 1/2 lbs rump roast, trimmed of fat and cut into 1-inch pieces
  • 1/3 cup all-purpose flour
  • salt and freshly ground black pepper
  • 4 cups low-sodium beef broth
  • 1 Tbsp red wine vinegar
  • 2 (15 oz) cans diced tomatoes
  • 1 tsp dried oregano
  • 1 tsp dried thyme
  • 3/4 tsp dried rosemary, crushed
  • 1/2 tsp dried marjoram
  • 2 bay leaves
  • 1 1/2 lbs Russet potatoes, peeled and diced into 1-inch pieces
  • 8 oz cremini mushroom, sliced
  • 3 Tbsp chopped fresh basil
  • 2 Tbsp chopped fresh parsley
  • Parmesan or Romano cheese, for serving (optional)

Directions

  • Heat 2 Tbsp olive oil in a large enameled cast iron pot over medium-high heat. Once hot add carrots, celery and onion and saute until lightly golden, about 5 – 6 minutes. Add garlic and saute 30 seconds longer. Pour mixture into a heat proof bowl and set aside.
  • Place beef in a large resealable bag, add flour and season lightly with salt and pepper. Seal bag and toss well to evenly coat beef in flour. Return pot to medium-high heat, add remaining 3 Tbsp olive oil. Once oil is hot add beef and cook stirring occasionally until beef has browned. Add 1 cup broth and red wine vinegar and cook, stirring frequently while scraping bottom of pan to loosen browned bits on bottom, until sauce has thickened. Add remaining 3 cups beef broth, diced tomatoes, oregano, thyme, rosemary, marjoram, bay leaves, potatoes, mushrooms and sauteed veggie mixture. Season with salt and pepper to taste and bring mixture just to a boil, stirring occasionally. Reduce heat, cover pot and simmer 3 – 4 hours, stirring occasionally, until beef is very tender.
  • Stir in fresh basil and parsley. Serve warm sprinkled with Parmesan or Romano cheese if desired.
  • Recipe Source: Cooking Classy

If connection is better for typical kids…

by , on
Mar 15, 2014

is it critical for those with special needs?

I just read this article which talks about how too much time in a front-facing stroller can limit your baby’s speech and physical development. Studies show that babies in rear-facing strollers have more advanced language skills than babies in front-facing strollers.

I was very keen for my boy to be in a parent facing stroller which is why I chose the Stokke Xplory for my first born, and selected the Stokke Crusi for my daughter.

After I learned about her Williams Syndrome, I was doubly glad I had picked another one of Stokke’s Connection Strollers. (We also got the Scoot chassis to make extra use of the sibling seat from the Crusi).

Little Obi isn’t talking yet, but she is certainly communicating in her own way with me and her other caregivers. It’s so amazing to be able to talk and sing to her and interact with her when we’re out and about.

It’s hard when you have the extra complications of a child with special needs to wade through all the baby stuff out there and find what works for your budget, your style, your parenting philosophy AND your child’s needs. I realize my stroller pick is spendy, but for me, being able to look Obi in the eye and have her see the world at my level was very much worth it.

What can I say? When it comes to Stokke I’m a pretty big fan.

They have a new high chair system called Stokke Steps and I couldn’t help but check it out today. It’s a system that works from newborn to 180 lbs…yep you read that right… the chair, like their Tripp Trapp will last until adulthood.

It is also focused on connection, with the a design that allows baby to sit at the table with the family when she’s ready.

What piqued my interest is how adjustable the seat is, how much support it provides baby, and how nice looking the bouncer is.

Why was I looking at the bouncer with a 15 month old? Well, developmentally, Obi is still a bouncer baby. I couldn’t get any info on weight limits for the bouncer. (I’ll email them and report back)  But I did try Obi in the chair and it fit like a glove. The foot rest comes up high enough that she can rest her legs while sitting. The chair back in the baby set moves forward enough to support her low tone. And the tray is close so she can easily reach, but large enough not spill things over the side as she learns to control her movements.

Again, another spendy choice, and maybe not within reach at this time. But, with the ability to adjust the seat and foot rest, longevity, ability to have a bouncer and then a reclined seat up off the ground (more connection), the ability to have it at the table (connection with the whole family), the Stokke Steps system is now at the TOP of my wish list. It’s really nice looking too…

You can learn more about Stokke Connection Strollers here and the Stokke Steps system here.

*I wasn’t compensated for this post…just a fan, talkin’ about stuff I love.

Well, I feel special.

by , on
Mar 9, 2014

liebster-blog-award

Joey and the Owl nominated me for an amazing BLOG AWARD. What fun!

I’m fully borrowing this description from her post.  This award is something passed around in the blogging community where bloggers nominate other bloggers. It is a way to promote newer blogs and introduce new followers to these blogs. Mommydo is really just getting started and I’m *blushing* with pride over being recognized by a fellow blogger.

Here are my answers:
1. What made you want to start blogging?

Well, I wanted to chat about random things but when I’m up and ready to connect, everyone else is zzzzz. I also needed someplace that was my space to try new things, complain, gush and just hang out. I’m so thrilled others are hanging out with me.

2. Who inspires you?

My fav blogger Lindsay @ the little house blog is my current inspiration. I am in awe of her graphics and her amazing eye, but totally relate to her working mom life.

3. What is one piece of advice you wish you could give your younger self?

Enjoy yourself. Take more vacations. Be alone more. And show off that damned 6 pack. One day you’ll miss it. (Sorry, that’s 4)

4. What is your favorite item in your closet right now?

Oh, brand new shirt from @girlfridayclothing.

Screen Shot 2014-03-09 at 12.20.21 AM

By Fever London

5. What is currently your favorite album, artist, or song?

Say Something. What a lovely tune.

6. What made you choose the title for your blog?

My little boy used to hand me things and say “Mommydo” when he wanted me to do it for him.

7. Must have beauty product(s)?

Nars tinted moisturizer and Bumble and Bumble dry shampoo.

8. When are you happiest?

When I know it’s my turn to sleep and not stay up with the baby. And when I get good news at one of Obi’s appointments.

9. First celebrity crush?

Hans Solo

10.Where is your dream destination?

Antarctica…someday.

I also need to nominate some other blogs so here goes:

I think Cheering on Charlie received this award from someone else, but I’m giving it up anyway.

I am also thrilled to be following The Adventures of Love Bug and Squirt.

The Busy Nothings isn’t a new blog but I’m throwing it down here anyway.

I also like Making Mondays.

And finally I leave you with Iamafoodblog.This one is world famous, but if you want to see one amazing food shot after another, go here and drool.

I am so happy there is a world of blogs out there to inspire, excite and most importantly help me feel I am not alone. Thanks to all who take the time to share their fashion, food and life experiences, good and bad.

My questions are the same:

1. What made you want to start blogging?
2. Who inspires you?
3. What is one piece of advice you wish you could give your younger self?
4. What is your favorite item in your closet right now?
5. What is currently your favorite album, artist, or song?
6. What made you choose the title for your blog?
7. Must have beauty product(s)?
8. When are you happiest?
9. First celebrity crush?
10.Where is your dream destination?

 

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