Today is Pregnancy and Infant Loss Remembrance Day.
I remember our first loss like yesterday. Not one to keep quiet about things most people don’t like to talk about, I wrote this post the day the learned we’d lost Sweet Olive after IVF #2.
If you share this experience, I hope you haven’t had to suffer in silence, and I am so very sorry for your loss.
I have work and family responsibilities including caring and advocating for my daughter who happens to have an intellectual disability. Getting to sit down and read an entire book is a luxury I can rarely afford.
Lucky for me, I was recently sent on a business trip. On a plane. Away from home. No inflight movie for me. I was thrilled to be able to dive into your the latest book (I’m a huge fan). I had no idea what it was about. I grabbed it and off I went.
It turns out I was hooked from page 1. The woman who had grown up with a heart condition? The parallel story of a mixed-race guy who growing up in the eighties? The emotional basketcase mom who carries the scars of raising a child with a medical condition that kept the mom on high alert from a touchy birth through numerous scares? So good. I really felt for her in particular. You captured what that feels like so honestly, and beautifully. I was moved to tears. Imagine my good fortune, I thought, in choosing a book that made me feel ‘seen’, understood and not alone. I was struck by the truth that was flowing off the page.
And then, not much further along, I was stuck again. And not in a good way.
In the midst of a conversation between the main female character and a friend in their teens, the one girl drops the R-word and the other girl responds with the same word. It was like a sneak attack in what felt like a ‘safe place’. Retarded. It pains me to type it out. Such an ugly word.
I was caught by surprise (just as I am when I hear the word in casual conversation). It came out of nowhere. It wasn’t like the book was full of language the pushes societal bounds. Twice you chose to write “the n-word” rather than spelling that one out. Why was the R-word so easy?
In a bizarre coincidence, as I closed the book, angry that you didn’t take the time to find another word, a beautiful little boy who happened to have down syndrome came bounding down the aisle past my seat.
That little guy deserved better, favourite writer lady. My daughter deserved better. I deserved better. There are more than a million words in the English language. Choosing to use the R-word is not just lazy on your part, it’s also irresponsible. Millions of people read your books. When you use the word, it tells all of them it’s ok to say it, read it, print it. It’s clear you don’t think “the n-word” is ok. How is this different? I know, it’s just a word, you have artistic license blah, blah, blah. But the thing is, it’s not just a word. Not to individuals with intellectual disabilities and parents and family members like me who advocate tirelessly for inclusion and acceptance. It represents prejudice, discrimination and its continued use makes an entire group of people seem “less than” in society.
I expected more than that from you – a writer. A mom. And now I don’t know what happens because I couldn’t bring myself to finish the book. If you happen to see this letter, I’d love to hear your thoughts on the matter.
Oh, and I’d like my money back.
Three years ago, Shane headed off to his first day of Montessori. He walked the 1.2km to the school, was mostly potty trained and was already fluent in sarcasm. Alma is the same age today as he was then. Tomorrow he embarks on a new journey at a new school. Once we drop him off, Alma will start the new year at her 2.5h per day reverse integrated special needs preschool. We have a walker prepared for her and her TPSL block starts right off the bat. She’s been accepted into Physio at Holland Bloorview so has weekly visits there too. I am starting to speak fluent specialneedsparent.
When I applied for Shane to enter that Montessori, I had to outline my goals for his education. I wrote that I wanted him to be able to decide for himself what interested him, and develop a lifelong love of learning.
When Alma joined her preschool, I had to do the same. I wrote that I hoped someday she would learn to read, and achieve an independent life, in whatever form that may take.
I hope tomorrow both of them get one baby step closer to those goals.
Today, as I write this, I’m actually standing in brilliant sun and walking in the pouring rain at the same time, which seems fitting.
That’s exactly how I feel.
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