mom in park: How old is she?
mom in park: Wow.
Yes she has some delays.
mom in park: Oh. Is she walking?
No, not yet. Someday.
mom in park: Huh. Will she catch up?
No, probably not. But I’m sure she’ll surprise us in other ways.
mom in park: She is cute…
Then I snapped this photo and thought about how I see her: flying out in front, her brother smiling behind her.
Swing on sweet girl. Aim for the sky.
One of the little secrets of parenting that no one likes to talk about is that we all want to win. I know, I know, parenting is not a competition.
But it kind of is. It’s a competition with yourself to have your kids turn out in the way that you believe is best for them. I’m not talking about making them something they’re not. (Though sadly, some people see it this way ).
I mean having kids choose to play a sport you played, or go to your alma mater or love reading as much as you do. For instance, my typical child loves language. He has a broad vocabulary, a sense of humour and grasp of sarcasm that exceeds his years and I love it. I’m a word person and I’m so pleased that he follows in my footsteps – #winparenting. I know others who are stoked that their children have grown to pay no heed to expected gender norms, and others still who love that their kids would much rather chase bugs than watch TV. win. win. win.
With Allie, my wins very different. They’re functional wins. A word! yes! A movement that means we’re closer to walking. Hells yeah. But my heart still aches when I think of all the little wants and wishes that will likely never come to pass in the way I imagined before.
Tell a book lover that there’s a chance your child will never have the capacity to read at all, or a runner that their child may never be surefooted enough to make it around the track. Those are the little losses that make receiving a diagnosis sting in the darkest parts a parent’s heart.
As one who tends not to take no for answer, I’m inclined to see those areas as ones that need special attention. They may never happen, but I’m not planning on letting them go without a fight.
As I was watching the inspiring opening ceremonies of the Special Olympics World Games in LA this past weekend, I was very taken by the stories of the athletes, the joy on the face of everyone in attendance and the history of the Special Olympics movement. Wow. I went through a serious amount of Kleenex.
There are countless athletes there this week with the same syndrome as Allie and they are kicking butt. Medals in gymnastics? Swimming? Amazing.
I was particularly taken by the Special Olympian Oath.
“Let me win. But if I cannot win, let me be brave in the attempt.”
It will never be me in that athletes parade, but I feel the parents in the stand live the oath too in their own way. In the face of every Mom and Dad cheering, supporting and reveling in the day, it was clear that getting from where they started to the games was a hard fought battle for the whole family. In making it there, they were already winners.
Parenting is a hard sport. Parenting a child with exceptional needs is harder.
We still want to win on our own ways. Sure, we’re told to expect less. But should we listen?
I think I’ll choose not to. Not after seeing those 6500 athletes march proudly into the stadium. Not after seeing those parents rejoicing in the stands.
From this day forth, I will bring all my fullest hopes to the parenting game. I will believe harder and push further and, if I find myself close to giving up, I will find a new way. I will not let others low expectations set the bar for what might be achieved.
Let me #winparenting.
Let me win. But if I cannot win, let me brave in the attempt.
PS: Two days after seeing the Opening Ceremonies, I enrolled Allie in the Special Olympics program. Did you know they start at age 2? She starts in the fall. I can’t wait. Maybe she’ll be in that athletes parade one day.
The long pause after people say Allie is adorable and ask how old she is. She is small for her age, so I suppose she could be mistaken for her developmental age. People are really thrown when their 10 or 12 or 14 month old is the same size and further along. They get uncomfortable. They’re not sure what to say. There’s a long, long pause before then say again, just how cute she is.
Sometimes I let them off the hook and tell them about WS and how it affects her. And sometimes I just don’t feel like explaining her. Sometimes I just talk about the weather or the park we’re in or the boy.
At the wading pool, she’s sitting, splashing, squealing. She’s smiling and happy. At that moment, it’s the most important thing about her.
I am definitely a fierce advocate. I strongly believe that spreading the word about Williams Syndrome is the key to inclusion and acceptance and so on.
But sometimes, I just want to let a little girl splash in a pool.
In the middle of that long pause, I hear her laughter, her little songs, her joy.
My words about her syndrome would drown it out.
Sure, people would learn more about what makes her different.
But they’d miss all the parts that make her special.
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.
There may not be a plaque with Allie’s name on it, or a wing of a hospital named after her or all the Williams Syndrome benefactors that are rallying around our fundraiser.
There will likely never be enough zeros on our efforts to be considered newsworthy.
No hand shaking photos. No press release.
There will be a lot of hustle. A lot of late nights and early mornings. A lot of no. And I mean A LOT of no, I can’t help.
But there is also yes. An echoing chorus of yes. Each yes turning someone else into a yes, I’d love to help.
And $5 raised becomes $50, becomes $500 and so on.
Maybe it’s that cute little face. Maybe it’s the conviction of a parent that makes someone with no vested interest want to help.
Maybe it’s just human nature to be part of something – even if it’s small.
Doesn’t everything start out small?
Maybe the fund that just got that plaque and that wing started out small too.
And $500 becomes $5000, becomes $50,000 and maybe $50,000 becomes even more.
And with that comes awareness. Education. Research.
With that comes the best chance for the best life for Alma and everyone living with Williams Syndrome.
And that’s so much more rewarding than a plaque.
Besides, I’m pretty sure if someone made a plaque, I’d try and auction it off for more money…
Thursday the 4th of June is the last day for the 2015 Auction for Alma.
Stop by. Make a bid or a donation to support Allie and all families in Canada living with Williams Syndrome.
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.
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
I’m in the midst of doing some research focused fundraising.
There have been a number of people who’ve asked me if there’s a cure for Williams Syndrome, or if there will ever be.
For Alma, there will be no cure. The chain of 28 genes that is missing from chromosome 7 in her body can’t be replaced or repaired. It is a part of how every system in her body functions. One of the genes missing, the elastin gene, means the various tissues in her body don’t resume their shape after stretching or contracting.
If you were to suddenly replace the missing genes that caused her brain to be smaller than a typical person, with neuropathways that are larger in some areas than yours and mine, and smaller in others, her brain couldn’t suddenly revert to a typical brain.
There is some research that suggests someday, they may be able to use gene therapy to make a change in babies not yet born…but that’s a long discussion for another day.
Though the cause of Williams Syndrome seems simple, 23-28 missing genes – the ramifications of the deletion are far reaching – effecting most systems of the body.
But that by no means that research is futile in improving the lives of people like Alma who happen to have Williams Syndrome.
Far from it. There are people researching the best methods for teaching kids with WS to read, curing illiteracy and helping to increase the odds of future employment.
There are others researching why kids with WS suffer sudden cardiac events, often resulting in death, when individuals with WS receive anesthesia. This can mean the difference between life and death, even during simple procedures like having ear tubes placed.
There are folks studying why some have debilitating anxiety, why kids with WS have too much calcium, what techniques can be employed to help people with WS understand the difference between a safe person and one who will cause harm, how to make a friend and read social cues. Others are studying how to manage the serious cardiac, gastro, endocrine, digestive, cognitive, behavioral, social, epidermal, intellectual and developmental challenges that come with WS.
And in turn, they are applying these learnings to unlock clues for other issues and syndromes. Some believe a ‘cure’ for Autism lies in the overly friendly personalities found in WS. And there are a host of other questions they feel can be answered by looking at the unique mosaic that is Williams Syndrome.
So is there a CURE? No.
Will the research make a difference in her life? There is no doubt.
Research is a CURE for despair and a catalyst for hope.
And who couldn’t use more of that?
That Paul Simon knows some things about things.
“She said a good day ain’t got no rain. She said a bad day is when I lie in bed and I think of things that might have been.”
So one of my amazing sponsors gave some lovely kids books to The Auction for Alma. And one is called “Someday my Love” and it’s the story of a new mom and all the hopes and dreams she has for this baby girl.
Except she missed a few:
Like “Someday my love, I’ll hold you without all these tubes”
or “Someday, my love, I’ll hear you say Mama, and know the 2 year wait was worth it”
and “Someday, my love, we’ll go to a park that can accommodate your walker and you’ll play hide and seek with kids instead of stuffies”.
Plus “Someday, my love, you’ll have a friend”
And, not to give the book away, “Someday, my love, when you’re hair is grey and I’m gone, maybe you’ll know, in your heart, I did the best I could. And hopefully it was enough.”
Yeah, the book doesn’t go like that. The baby arrives, and a page later smiles, then talks and runs and skips. The little girl rides a bike and has besties and then a beau. She has a little baby of her own that the storyteller gets to hold and love like her child all over again. And then the mom is gone at the end, but the girl has a college education and a family. She’s not alone.
There are no bumps in the road. No glitches. No bad days, boo hoos or why me’s.
I used to think that would be our someday before, you know, just before.
Now our somedays aren’t the kind that people write books about. They’re the kind that make people give the pity face, and the deep sighs when they hear about you.
i know this because I’ve been telling a lot of people about you these days.
But as I picked myself up this morning and dusted myself off, I recalled that our somedays aren’t yet written. And with the right amount of hard work and love and luck, our somedays could very well exceed my wildest dreams.
I really hope the person in the auction who gets the books has all the somedays they read inside. But, please know that if you’re like me, and the somedays look a little different, there will be many, many good days that ain’t got no rain.
And nobody is gonna fault you one bit if every now and again, you lie in bed and think of things that might have been.
On this journey I’ve learned a few things. Ok, maybe a great number of things. But one of the most important things I’ve learned is that there are LOTS of pretty good days (even great days)…being a special needs parent isn’t all doom and gloom. But then, out of nowhere, when you least expect it, your heart breaks all over again.
This past weekend, the boy and I were out visiting local businesses looking for donations for The Auction for Alma. He remembers the auction from last year – we jumped into the bidding to secure the Lego set that had been in the house in the donation pile that he WAS NOT going to let go to another family. So bringing him on the walk seemed like a perfectly good idea.
Until he asked why?
“Why do we need to do an auction for Alma? Why can’t she ask for donations? What’s so special about Alma?”
And there it was. He knows there’s something about Alma.
He look up at me with those big old eyes and I didn’t quite know what to say. I got all welled up and took a deep breath and explained that when Alma was being created, all the pieces didn’t go quite in the right spots, like when you build a Lego set and miss a few pieces.
So she has a little trouble doing some of the things that other kids find really easy, like walking and talking, but otherwise, she’s just like everyone else.
Then he asked if that’s why she needs so many doctor’s appointments – something else I didn’t realize he’d noted – and I said “yes”.
And I had a little cry that I blamed on the wind. My heart broke over the need to have this conversation at all, and because there would be so many like it in the coming years. And that many of them would be far more complicated than this one.
The boy didn’t notice. He simply said “Oh, then I guess we’d better get a lot of donations so we can really help her out.” And then we kept walking and he jumped and skipped along.
I’ve learned that your heart breaks over and over again, at unexpected moments and in unexpected ways.
But when it heals, it’s a little bigger and a little stronger.
In the wake of every heartbreak there’s a little more room for courage and a little more room for determination and a little more room for love.