Williams Syndrome Wednesday: We become the parents our children need us to be

by , on
Apr 16, 2015

HangOnTight

I’ve recently been told I’ve really taken to this whole ‘advocacy thing’. Which I suppose is true, but doesn’t really say all that much about me. Other than that I am a parent. And that’s what parents do.

I’m quite certain that if you asked all the parents sitting at any given hockey rink at 6 am on any given Saturday, many wouldn’t have pictured themselves freezing their butts off 2-3 mornings a week. Ditto for the dad’s sitting at ballet recitals talking about turnout, mom’s debating the relative strengths and weaknesses of the Ninja who make up Sensei Wu’s team in Ninjago, or dog owner toodling around a park at 6:30am in the dark at -15 waiting while their fur-baby does their business.

I would never have guessed that I would be able to name every piece of heavy machinery at a construction site. But my son was a truck fanatic when he was two, and so I became a truck fanatic. It gave us something to talk about. It expanded his vocabulary. It was our thing, going to see the construction sites, chasing the garbage truck down the street. Sneaking behind the barriers of backhoes parked in the lane.

He needed someone to help him explore his passion for trucks and that someone was me.

My daughter is no different. She needs an expert in her syndrome. She needs someone to navigate the system to ensure she has all the services she can get to help her reach her full potential.

She needs someone to rage against a future that predicts that she will live in poverty, have an 83% chance of being sexually assaulted, but only a 34% chance of having paying employment.

Yep. Depressing right? It would be, if I didn’t believe it doesn’t have to be like that. If I didn’t believe the world can change…that things can change. That you can change.

I changed. How could I not?

My daughter needed me to become an advocate – for her and for every child like her.

So yeah, I really took to the advocacy thing. Just as this summer, when my boy joins his first team, I’ll really take to the Soccer Mom thing.

My #resumom just keeps growing. Champion of the construction site mom. Lego piece finder mom. Soccer Mom. Advocate mom. Speech therapist mom. PT mom. OT mom. System navigator mom. Williams Syndrome expert mom. World changing mom.

Or just mom. Just like every mom… or dad.

We all become the parents our children need us to be.

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]

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.

DSC_0105

The long overdue review of Stokke Crusi

by , on
May 18, 2014

I’ve had the Stokke Crusi for about a year now, give or take. Which is a long time to take to get around to a review. I discovered the Stokke brand in 2009 when I was preparing for the arrival of the Bubble and googled best stroller for bad back. Up popped the Xplory. I was instantly sold, despite the hefty price tag.

Fast forward to April 2013. After a long winter of being stuck inside with obviously not typically developing Obi hiding out from RSV season, I set about getting a new Xplory. I already had an upgraded seat so I thought I’d go and buy a new chassis.

When I arrived at the store, there, in all it’s Black Melange glory was the new Stokke Crusi. It was a vision. I pushed it around the store, doing laps past the new version of my much loved Xplory and decided to forgo the stroller I had already owned for the new one – complete with sibling seat (with the intention that it could be used later when Obi started a nanny share like we had done with Bub.)Stokke Crusi 1

It is a wonderful stroller. It really is. It’s lovely. Turns well. Is easy to push. Sigh. But it’s not the Xplory, my one true love.

That being said, there is much to love and I’m certain that if the Xplory was not the one that got away, I would be wholly sold on the Crusi.

Crusi Blue

It really is an eye catching stroller, even though it has a more conventional look than the Xplory. It does have a large storage basket. (You can see my amazing Epiphanie Camera Bag in there) And it has a nice high handle.

Crusi Feet

Babes, especially those with low tone like little Obi do better when their feet can touch. The Crusi and the Xplory share the same seat design with the one hand foot rest adjust you can see here.

DSC_0143

Like the Xplory, the Crusi is one of the Stokke Connection strollers and I think you can see from this photo, the seat is HIGH. Obi loves to look people in the eye and this seat means she never misses an opportunity… except when she’s sleeping, like in this picture. It’s easy nappin’ because of the super easy adjustment of comfy seat positions.

Crusi Adjust

As you can see here, Stokke makes it easy to figure out how to make the stroller work by making all the parts that do something a different colour. The top push button adjusts recline and the lower one collapses the buggy for transport.

DSC_0144

Crusi is totally suited to our big city life. Obi’s caregiver pops on and off the transit, it has a cup holder for trips to cafes and for water bottles required for long beach walks. It’s easy to maneuver, did great in the snow this winter and has an adjustable handle making it easy for me to push and for her caregiver who’s quite a bit shorter.

DSC_0148

And of course, as with all Stokke products, the attention to detail and design is top notch.

There are a few little things that get on my nerves. While the 2 stage fold works for me because of the whole bad back issue, I find it doesn’t get super flat and doesn’t lock in the folded position. Not all that important because we have a big enough car but still not perfect. Also, I kick the crossbar when I walk.

Which I didn’t with the Xplory. Which folds flat. And locks. And well, is my first and one true love. Sweet Obi will likely be in a buggy for much longer than a typical kid, and with the latest version of the Xplory hot off the press, I may bite the bullet and buy that frame I was considering last year. No I am not made of money. But I have that second seat. And sometimes you just have to do crazy things for the things you love.

DSC_0135

If you like a slightly bigger basket and a slightly less avant garde but still high design look with the same amazing connection, quality and customer service you expect from a premium brand like Stokke, go for Crusi. And don’t forget the option for the sibling seat…(which I didn’t even touch on but we did use a few times when I brought the stroller home and found it would be great for 2 kids around the same age or close in age but was only so-so for my 3 year old who couldn’t understand why the baby got the top bunk and he had to be on the bottom. As this was my original intention – to have Obi have a nanny share before we knew she would do better with one-on-one care – it was a great feature and selling point, just not one that has been used to full potential) which is a nice addition to the Stokke line.

If you are me – loving the look, not needing that much space, not gonna use a sibling seat, have a slightly longer stride, knowing you did the right thing by letting your last Xplory go but wondering why the heck you didn’t just get the same thing over again, go for Xplory.

DSC_0123

At the end of the day, no matter what, if you choose a Stokke stroller (and I’ve had all three at one time or another) you will not regret your decision to go with Stokke – even if you pine for another model, late at night. You can read more about Stokke strollers here.

And, although I am an embarrassing super fan who writes on their facebook page a lot, all opinions here are about strollers our family has purchased and used.

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.

 

Williams Syndrome Wednesday: Alikes

by , on
Feb 5, 2014

Have you given thought to the change in how the people see ability? When I was growing up, people who had differences, physical and developmental were kept away. They went through school in different classes. They weren’t playing sports at the same venues or in the same dance classes I took. Every one who was with me was like me, and everyone who was not like me was somewhere else. This magnified the all the ways we were different.

When I learned about Obi’s condition and every day since I’ve fretted about all the ways she’ll be different. From her peers. From her brother. From us. All they ways we won’t really be able to understand what she’s going though. All the ways other people will see how she is not the same.

This week I had an epiphany. It was Facebook’s doing. You know how everyone is sharing those Facebook Anniversary movies. Well, watching mine I had the first real moment of realizing how much Obi looks like her brother. Not just in features, but expressions as well.

I’ve spent months and months noting how much she looks like a ‘Williams’ kid. I was so blinded by this ‘difference’ caused by the deletion of 28 genes on chromosome 7, that I was completely blinded by what was happening on the other 22 chromosomes.

Despite the people at genetics telling me over and over that she is more than the diagnosis, despite loving her absolutely in spite of her diagnosis, I have been completely and utterly guilty of allowing it to overshadow other parts of her.

As soon as the light bulb went off, I was reminded of the time after my dad died.

I had this long stretch in which I could only remember him in that moment. My whole experience of him was whittled down to that brief fleck of time that was his death. At some point, (quite some time later), the shadow that had fallen over the rest of my memories of the time we had spent together lifted, and I was able to see that instant as such a small part him and me. Just a blink. Although his death was so present, so looming, I realized I needed to remember all the days he lived to put the one day he died into perspective.  After I did that, joy started to seep back into my life.

Once again, I can now clearly see the magnitude of the shadow that has fallen. It’s been a f$#%ing hard year.

Those differences – they take up a lot of time. Appointments, therapies, exercises, explaining her delays, little pity parties – all about the different.

But sweet Obi looks a lot like her brother. She lights up when she sees him the same way he lights up when he sees me. She likes to ‘dance’ with this crazy wiggle then stop and wait for you to do the same. She has my hands. She has so much in common with her dad, her brother and me. We’re more alike than we are different.

I’m gonna make an effort to me more present for those – the alikes. I need to. And more importantly, I think she needs me to.

Williams Syndrome Wednesday: 1 Year Adjusted

by , on
Feb 1, 2014

Dear Obi,

One year ago today was your due date. You were born almost 6 weeks early, and despite what everyone said at the time, you haven’t ‘all but caught up’ by your Adjusted Birthday.

You’ve checked all the little boxes for 8 month milestones and have, just in the last couple of days, finally checked off the first ones for 9 months. You’ve now clapped and banged objects together. You reached your hands up to be picked up this week too.

Although they are not on the list, last week you gave me my first official hug, and today you gave me my first licky kiss. Amazing.

I can freely admit that it stings to watch all the babies pass you by. It really does. But as you slept curled up on my chest yesterday morning…when I should have been working, I got to enjoy the flip side. This baby time is so fleeting. And the mom’s of all those other kids have already started to say goodbye to the magic of these very firsts. The toothy grins, the first peek-a-boos. The snuggley sleeps that fit right on my chest, with a neck nuzzle and tucked up knees. A warm little bundle, still wearing 3-6 month clothes (depending on the brand). Still my little baby.
That’s what I celebrate today. So, so many unexpected things have thrown curve ball after curve ball since I learned that this day should be your birthday.
But having a sweet baby, my last baby, just a little longer than most is the bright side.
Happy One Year Adjusted Birthday little one.
Sweet, sweet dreams.

20140201-200209.jpg

Follow me on Instagram

Don't miss a thing. Follow now!