Williams Syndrome Wednesday: #winparenting

by , on
Jul 31, 2015

alliepool

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.

Coulda beans are the cruelest legume

by , on
Jun 22, 2015
There are quiet little moments when they’re small and still. Tiny little specs in the mosaic of a full and complex life. Work, family, whatever else you spend your time on.

Then, from nowhere, they pop up 3 sizes, 3000 sizes and suddenly they take over. All you see, all you do. Everywhere you look, damned coulda beans.
It’s not like you put them in a pot to soak overnight.
Nope, they sprout up all on their own.
This week, the end of ‘kidergarten’ (montessori casa) for the boy and the impending school switch to grade one brought the beans in full force.
I used to walk my pregnant self to his school imaging both kids growing and learning under that roof.
Instead, he’s being sent to grade 1 at a public school as his current school can’t accommodate his sister, and our finances can’t accommodate all her accommodations and his tuition.
He’ll be fine. She’ll be fine. It’s me that’s not fine.
IT WAS SUPPOSED TO HAVE BEEN DIFFERENT the coulda beans shout.
Beans aren’t supposed to talk. Shut up, be quiet… turns out beans don’t listen either.
Then they bring their friends.
They sing “they coulda been going to the same school and running through the park holding hands and wrestling and snuggling and calling each other names and playing copycat and driving you crazy”.
“You were supposed to buy cute sandals and go to ballet class and chase a pink blur in fairy wings and…” they just keep going, spilling out all those “things” all over everything.
deep breath.
little cry.
deep breath.
ugly cry.
deep breath.
Straighten your hair. Wash your face. Hug your kids.
deep breath.
Try to remember there’s no point in getting caught up in what a bunch of beans have to say.
Watch those f’ing beans shrink back and away, knowing they’ll be back, and tell yourself you’ll be ready next time. More prepared.
Buy water proof mascara. Who are you kidding?
Accept they will always be coulda beans lurking in the shadows.
But know if your heart if you spend all your time there, in the shadows with the coulda beans, you’ll never spend any time in the light.
And despite all that has come to pass, the light is a glorious just the same.
 Glorious Light

Williams Syndrome Wednesday: R you kidding?

by , on
Jun 13, 2015

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The R-Word. It’s a hotly debated topic.

I know right? What’s the debate? It’s not a nice word. It makes a whole class of people feel bad. It’s used by bullies to make perfectly normal people feel less than.

But amazingly, just about every time I tell someone they shouldn’t use the R word after they r-bomb it onto a conversation with me or it appears as someone’s post on my Facebook newsfeed, I get a whole host of excuses. I’ve heard “yes, I really need to stop saying that because now my kids are saying it”. I’ve heard “I’m sorry, I was just really tired”. I’ve heard “I apologize that you took it personally but I’m not apologizing for the joke because that was fucking funny”. I’ve heard “Wow, I didn’t even realize I said it”.

Huh. Rarely have people said, “You’re right, I never thought about it that way, there’s no place for that word in my vocabulary”.

Now I’ve also heard “what’s the big deal”, “I didn’t mean it the way you think” and “I would never say it to a person who was actually mentally handicapped” (um, the correct term in case you’re new here is intellectual disability).

If you are one of those people who still find the word makes it’s way into your conversations, I urge you to use the N word one time for every time you use the R word in conversation and see how that goes.

As in…wow, this project is so R-word. Those N-word have no idea what they’re doing.

Or I can’t believe you did that. You’re such an R-word. I don’t know why I hang out with N-word like you.

Maybe it will help you come to understand that saying the r-word at all makes you a bit of an asshole. When you say it to me it makes you a giant asshole. When you say it without even knowing you say it… asshole. When you tell me I just can’t take a joke or that I’m too sensitive, then you’re simply missing the point. (and you’re an asshole).

It’s not about me. It’s not personal. It’s universal. It’s human rights. It’s about being a good global citizen. It’s about the reason we don’t say the N-word. And how the G word is about pride and not prejudice, and why Native Canadians and Inuit are referred to the way they are.

When you choose to use the R-word you’re saying you (as in “I’m such an r-word), the thing you’re doing (this is so r-word) or the person you’re saying it about (you’re such a r-word) is stupid, slow, pointless, dull, unable to grasp what’s happening around you, dumb (another word that is used in a way that’s not what it means). It’s derogatory. It’s mean. And it’s just not an acceptable word anymore.

If you need further encouragement, you can watch one of the 195 million videos that come up on a google search for End the R Word.

It’s not personal.

195 Million videos.

Don’t tell me I just can’t take a joke.

Don’t tell me you won’t say it in front of me.

Don’t be an asshole.

There are estimated to be 1,025,110 words in the English language.

Pick another one.

Williams Syndrome Wednesday: The other shoe dropped

by , on
May 20, 2015

Have you seen this shoe? Lost Wednesday between Heath St. and Yonge St and Bloor Station – east-west plaform. Travelled south on Yonge to St. Clair and then south on the Yonge line to Bloor, tranferring to the Danforth line.

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I have seen the shoe and the jaw dropping bill that came with it.

It is one of two lovely shoes, one of which has taken a vacation from my daughter’s foot and landed somewhere in our fair city.

She’s a kids, kid’s lose shoes, I get it. On a philosophical level I totally get it.

But for me it was an all out, full stop, leave work emergency.

You see, these shoes…for a baby…cost almost $250. Yes – these pink and black combat boots for babies cost a LOT.

And the thought of losing one put me over the edge. Not only are they supremely pricey – they also come from a store that is an hour drive each way, and is only open 9- 5, five days a week. So replacing these not-so-cute boots for baby also costs 2 vacation days – one for the initial measuring and one to go for the fitting once they come in four weeks later.

It also means at least 4 weeks without these shoes, which provide the stability for her to use her walker and hopefully in the not-too-distant-future, walk independently. She needs the shoes.

Shoemageddon also brought one of those moments. Those “these are the real truths about having a kid like Alma” moments.

Of course there are the BIG DEALS – the health issues, worries about the future and education, the possibility of employment, will she be able to live independently, will anyone come to her birthday party? Will she be the one that people say “nobody can stand that kid, she just bugs people”?

This was one of the everyday moments that remind me that every little thing is just a little bit different. That losing a shoe brings a wave of dread. That she still can’t walk and who knows when she will. That her shoes cost as much as a week of summer camp for our son. Will we have to choose or can we swing both?

We kind of skim along the surface most days. We know there are differences. We know there are challenges. We try to ignore them and just enjoy both kids as they are.

But then, something small happens. A little shoe drops, and you’re right back in the thick of it all over again.

If you see the shoe, please message me or tweet me @mommydoCA

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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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.

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