A Star is Born, by Emily Boycott

Editor’s Note:  Emily and I sat together in a local café as she wrote her story.  We brainstormed ideas together, then as it came time to write the first words, I waited.  Emily looked to me, to see how I wanted to start her story, but I told her I wanted the words to be her own.  Once she got started, “I am a person…” she didn’t stop.  Ideas flowed, and I was merely the conduit, typing the words and making them appear on the screen.  Emily is solely responsible for so clearly and eloquently bringing her life into focus.

Hi, my name is Emily and I am a person. I am a person born with Down syndrome. I was eight pounds, eight ounces when I was born at Guelph Hospital. When I came out, my mom didn’t know I had Down syndrome. She knew when she took me home and somebody told her afterwards. I couldn’t crawl, I needed help. My sister Beckie held the towel under my tummy and my mom moved my knees, pushing me along kind of, moving my arms and legs, “Right! Left! Right! Left!” I had a big belly and a big family. Counting me, there were five kids: my oldest sister Rebecca – who we call Beckie – my brother Matt, my sister Amy, me, and my youngest brother Mark. Mark is the tallest and I’m the smallest in the family. He’s 6’4” and I’m 5’4”.

My dad was thirty-five and my mom was thirty-four when she had me. My parents were one of the founding families of the Halton Down Syndrome Association (HDSA). When I was a baby, my mom got together with my friend Allan’s mom. Allan and I played together as babies while our moms talked and had tea. We are still friends today through HDSA’s Graduate Group. The Graduate Group is people with Down syndrome who’ve graduated from high school. I am now thirty-six years old.

I have made friends all over the world through Special Olympics. When I was sixteen, my mom found out about rhythmic gymnastics. I loved dancing in my room and with my friends, so rhythmic gymnastics seemed like the perfect fit. My mom became my coach, and my dad also took me to swimming through Special Olympics. I was fifteen when I swam for the Oakville Marlins, which is run by Linda Hickson, my friend Bill Hickson’s mom. He’s another one of my good friends. I dated Bill when I was fifteen, but not anymore. I have friends I made over the past twenty years through participating in swimming, rhythmic gymnastics, cheerleading, figure skating – and they are still my best friends. Special Olympics gave me the gift of life-long friendships.

Through my participation in sports and Special Olympics, I’ve been to so many places like Athens, Greece; Shanghai, China; Los Angeles, United States; London, England; and several locations across Canada, like Ottawa, Ontario; Vancouver, British Columbia and Antigonish, Nova Scotia. I’m a world traveler. My dad always says I’m his ticket to traveling. I have over one hundred and seventy-seven medals that I’ve won over the last twenty years, many of them while representing Canada at the International level. For my athletic accomplishments, in June 2019 I was inducted into the Halton Hills Sports Hall of Fame after being nominated by my friends Christine Arbic and Emily Arbic-Cohen. Thank you to them, this was a great honour.

Now I’m going to talk a bit about my home life and things that I do at home. There’s a lot! I do inside stuff and outdoor stuff. Inside, I like my room. I like to watch TV and DVDs. I like dancing, music, reading and writing stories. I like going on my iPad and Facetiming my sister, Amy. This is my chance to see my nephew, Reece, and my niece, Grace, because they live in Northern Ireland. I’ve also been there to visit them multiple times. I always have supper with mom and dad in the living room and we watch Heartland – a TV show about horses. I love horses! I ride horses at Foxfield Stables and I also volunteer there cleaning out the horses’ bowls and sweeping hay out of the hallway. I would love to go horseback riding on the beach! My friend Adelle and I are making plans.

My outdoor life. My family lives in the woods like the Cullen family from Twilight. In the summertime, we have a trampoline and a pool outside. I swim in the pool with my mermaid tail that my sister Amy and her family got for me. My mom, my dad and I like to go for walks, along with my other nieces and nephews when my parents are babysitting them. We have a trail in the woods we go on. We go bike riding and on nature walks. We have a volleyball net and have campfires on special summer nights. In the wintertime, we go cross-country skiing, and skating out on our pond. Sometimes we go downhill skiing, but we have to drive to those places. We have a snowmobile at my house, and I go on that with my dad. I would love to drive that on my own, but I have to get my licence first. I think I hit a tree once. I’m planning to get my licence, but I haven’t yet. I’d like to get my boating licence too because we have a Sea-Doo at my cottage. When I drive those two things, I need a parent with me in case anything happens to me. My pool that I have at home, I can’t go in it if my parents aren’t home. I can’t go in it late at night, like midnight – because I’m supposed to be sleeping – or if I’m home alone in the afternoon.

In July 2019, I will be my cousin Mariska’s Maid of Honour. I do a lot of stuff with my cousin Mariska. I have another cousin, Ainsley, and we always go out for sushi. I do a lot with Mariska and Ainsley, as well as with my brothers and sisters and their families. We are a close-knit family. We are also a hockey, Christian family. I got baptized when I was fifteen years old and we love the Toronto Maple Leafs. I met Jake Gardiner, Toronto Maple Leaf in Vancouver at a Special Olympics event. Then I met him at a pub in Toronto at another S.O. event, and my family and friends and I were asking him questions about hockey. I met him for a third time at a S.O. gala with his friend Morgan Rielly. I have a picture with them. I like meeting celebrities and I’ve met many, like singer Avril Lavigne, Twitch from So You Think You Can Dance, actress Ashley Olsen, and actor Arnold Schwarzenegger. “I’ll be back!” is one of his famous lines, and “It’s not a tumor!” is a line from the movie Kindergarten Cop that makes me laugh. I think he had a hangover – LOL.

Where I see myself in five to ten years — I would be in fashion. I love fashion and celebrities. And dancing at my own dance studio. I would love to tell celebrities what to wear. I have been on the red carpet in L.A. and I’d like to do that again. And I would also like to be a model or an actress because I like to pose in pictures. That’s where I see myself. I would like to be a hair stylist. I also have many hairstyles in my head I would like to do for other people, like for proms or weddings, and for famous people.

My advice for people with Down syndrome is to follow your dreams and make them happen, like in the song A Star is Born with Lady Gaga and Bradley Cooper. That’s what we are, a star that is born.

Emily Boycott is an accomplished athlete, decorated Special Olympic champion, world traveler, role model and public speaker.  In June 2019, she was the first person with a disability to be inducted into the Halton Hills Sports Hall of Fame.

My First Triathlon Experience at Guelph Lake I

Hand shielding my face from the sun, I stood looking out over the water at the point where gentle waves lapped the shore. Seven hundred and fifty metres looks like a long way out, let me tell you, especially when you’ve been practicing twenty-five meter swim lengths in the pool. I looked for a sympathetic gaze among the small crowd gathered at the beach. “The swim is daunting, isn’t it?” I threw the comment at a couple nearby. “Is it?” the man challenged me. No sympathy here. It’s race day, and everyone has their game face on.

I would be lying if I lead you to believe Guelph Lake was my first of first triathlons. Last year, I participated in Milton’s Try-A-Tri early on in the season, a respectable 250m swim, 10km bike ride, and 2.5km run. I rode a mountain bike and got in the water with little to no swim training, comforting and consoling myself with the notion beforehand that I was “an athlete” and therefore could complete the Try-A-Tri “no problem”. Also, haven’t we all been bike riding since childhood? And swimming! I love swimming! In pools and laying out to dry on the deck. These thoughts were delusional.

Swimming and cycling for pleasure are not at all the same thing as the activity performed in the pursuit of sport. Akin to the way walking and running are not the same thing. And though I was training for a marathon, and considered myself in decent shape, that short baby triathlon distance killed me. The swim was a complete disaster. I tried every stroke imaginable and came out of the water gasping for breath. The bike ride was equally traumatizing, as every single person passed me by, throwing their dust in my wake. And the run – my area of expertise – felt like a flop. My legs were bowls of jello filled with lead, and by the time the “bricks” feeling passed, the race was over. I was determined that my next triathlon experience should be different. After a sprained wrist in a bike accident debacle, I took the rest of last season off, choosing instead to focus the rest of the summer on marathon training, which took place in the fall.

With my marathon complete, I hummed and hawed. To run another marathon, or get back to triathlon training? I didn’t feel like I could pull off both. Upon reflection, I felt like triathlons and I had some unfinished business. I couldn’t let one fall off my bike get the better of me, and so I leaned back in the direction of multi-disciplinary training. My initial plan was to kick off the season with a Try-A-Tri, and work up to a Sprint Triathlon, but the race dates and our family’s plans conspired to push me right off the bat: I would compete in Guelph Lake I Sprint Triathlon.

With close to five hundred competitors in the Sprint Triathlon, as well as a relay and duathlon that run concurrently, it’s a busy and popular race. In planning ahead, I decided I would arrive an hour and a half before my 9:00 am race time. This would give me ample time to park, use the bathroom, set up my space in the transition area and register, orient myself as to the course layout, check my bike and take it out for a jaunt, go for a short jog, get my wetsuit on and last, but not least, test out the water and swim a few strokes. An hour and a half ended up being the exact perfect amount of time for me to accomplish these steps.

But let’s back up a step! How did I get to race day? As a person who’s been an athlete and competitor in some form of sport since I was a kid in the single digits, here is what I find works well for me.

Weight training. One day a week, I attend Body Pump at Goodlife Fitness. It’s a one hour class and you cover every muscle group. When I let this class go because I found the training to be too much when marathon training, I regretted it. Strength training appears to be quite important to my fitness regime.

Yoga. I try to make it to Body Flow at Goodlife every week. I find the combination of stretching and strengthening makes a huge difference in how I feel, and helps soothe achy muscles.

Running. While running is taking a back seat in my triathlon training, I’m still running three days a week on average. One of those runs is a long run, which for the purposes of my training now, is about 10km give or take a few. I was also fitting in two other 5 – 6km runs at a regular or tempo pace (a bit faster than normal, but not race pace), but I will be exchanging one of these for an interval workout in the space between now and my next triathlon. I’d like to get out running some sprints on a track while it’s nicer out. Speed workouts and interval training are what make you faster. You run faster but actually running faster. Two years ago, I placed third in a 5km road race by applying this principal of running faster to be faster. All winter long, I ran intervals on our treadmill and progressively increased my speed and sustained interval periods to longer and faster, building to a speedier pace than I’d ever run before. Translating that speed to outside was difficult, but manageable with practice, time and sustained effort.

In addition to running, I’ve had to put a major focus on swimming in the past year and with the nicer weather, getting out to go cycling as well. As I’ve really only been biking with the warmer weather, though, in retrospect, I probably should have been doing spin classes all winter, and it isn’t surprising that the cycle portion ended up being my weakest leg of the triathlon. On the bike is where I need to focus before my next triathlon, but I’m getting ahead of myself.

Swimming. I have been swimming all year, early Saturday mornings. In doing so, I’ve worked up to fifty laps. For my race, I needed to be able to swim the distance of thirty laps, but open water is a different beast.

Cycling. I try to get in a long bike ride with a friend on the weekend, and another shorter bike ride or swim through the week. As the cycle portion for this race was 19km, I was aiming for 25km rides as a shorter training distance and closer to 35km for longer. I am going to continue to extend these distances.

And last, but definitely not least, probably the most important aspect of my training is my rest day. There is no way I could sustain the amount of exercise I do without taking at least one day off. When marathon training, I scheduled two.

Sprint Triathlon distances are not all created equally. While Guelph Lake I is 750m swim, 19km bike, 5km run, the next race I’m planning to attend in Orillia has the Sprint distances at 750m swim, 33km bike and 7km run. That’s a 40 percent increase in the bike and run! I’m going to have to step up my bike training.

So here’s how the race played out.

My swim training paid off. I felt comfortable in the water, no matter how much of it I swallowed. Picture a mass of writhing salmon headed upstream, and that was what the experience felt like. Bodies flailing around me. On the plus side, you forget you’re in the middle of the lake. The swim is set up as a trapezoid. Out, across and then back. The swim across, parallel to the shore line, felt relatively short compared to the out and back. At some point on the way back, my arms were numb with fatigue. My hands and feet were numb from the cold. The water was a cool sixty-five degrees Fahrenheit. Landing ashore was a godsend. Then I was off, running up a hill to get back to the transition area, trying to strip off half my wet suit in the process, and breathing like a fish out of water.

Next the bike. DO NOT FORGET: helmet on and clipped before you even think about touching that bike! I later told Dan that I found the cycling section to be the easiest, though it is comparatively the longest section of the race. While the swim took me 19 minutes, the bike lasted for 44 minutes. Dan, ever my biggest supporter and toughest coach, gave it to me straight, “That’s because you weren’t pushing hard enough.” He’s probably right. Though I was working hard, there’s no doubt I have a thing or two to learn about how to cycle more efficiently. One step I can implement is to wear my bike shoes, which are clip in, instead of my running shoes. While wearing running shoes saves time in the transition zone because you don’t need to change shoes, bike shoes have their advantage. Instead of working to pull the pedal upwards, the bike shoes will do that for me, therefore using less of my energy and making my stride on the bike smoother (and silkier too, I imagine, especially if this was a hair commercial.)

Though I wasn’t super-fast, I felt strong on the bike, and it helped that I saw my cheering squad, my adorable little family, standing around the first bend. If that doesn’t give you a boost, I don’t know what will. Well, okay – besides training.

With the bike portion over with, only the run remained. As I used my Garmin watch in triathlon mode, it only showed my overall race time (and now was not the time to be fiddling with it), so I had no idea what my pace was, I just pushed myself to run as fast as I could at a jogging pace. The run portion is where endurance training pays off. But man, was it tough. Five kilometers is normally a comfortable distance for me. If you told me to get up and run 5km right now, I could (though I might ask you to leave), but as soon as you put some speed behind it, and a bike ride, and a swim, the Triathlon run feels almost like a new sport.

For starters, your legs will be unnaturally heavy from the bike, and I also had the unpleasant sensation of a stomach cramp. I felt irritable, like I needed a good stretch or – you know that feeling when you get restless legs? I had some of that going on, too. Eventually, my lungs and legs were burning. Truth be told, I was annoyed by the amount of effort this run was costing me. This is the curse of playing favourites: mistaking your preferred leg of the race for being the easiest. Not the same thing! It may be the lesser of three evils, but it’s evil all the same! Nevertheless, and despite my gripping, I was happy afterwards with my time of twenty-six minutes. And of course, I pulled out my signature move, and ran a hard sprint at the end and ended up passing at least five people. The crowd went wild, “STRONG FINISH!!!!” they screamed in excitement from somewhere beside me. When I sprint at the end, I know I gave it everything I have.

Completing the Sprint Triathlon was anything but easy. And though writing about it a few days later is making me feel exhausted all over again (partially because I still am), I had so much fun and am excited to complete another one!

In case you’re wondering, in terms of the burn, the Sprint came nowhere near the exertion it takes to complete a marathon, which makes total sense. Compare the hour and a half the Triathlon took me to the four and a half hours spent running my first marathon and it’s a no-brainer. I would rate racing a half marathon as being more demanding on my body than the triathlon felt as well, as a point of comparison, which also takes closer to two hours.

What it comes down to is this: how difficult you find your first triathlon will completely depend on your level of training and preparation going into it.

Best of luck, and to all the triathletes out there: have a great season!

 

Rage

The day started off innocently enough. I got up early, answered a few emails. Dan and I were chit chatting in bed, neither of us ready to commit to fully waking up. I finally decided to get dressed, and started pulling through the clean laundry basket looking for a particular pair of shorts. When I couldn’t find them, I felt a tinge of annoyance, but – no big deal – I’d fold all the laundry and they’d be sure to turn up. Thirty minutes later, with the weekend laundry now folded and put away, there’s no sign of the black shorts I’m looking for. I’m questioning Dan, has he seen them? Could they be in one of his dresser drawers, what about the girls’ room?

I’m pulling out stacks of pants from my closet, emptying my drawers, acting frantic and growing frustrated.

Dan lovingly attempts to sympathize. “That really sucks. Remember when I lost my raincoat?” I do remember when he lost his raincoat, and the point he was trying to make was that it eventually turned up, but that was months later when the idea of checking his golf bag in the garage finally occurred to him. I clearly didn’t have months to waste! Why would he even bring that up? Why doesn’t he get out of bed and help with folding the laundry and cleaning up this messy house so I can find things. That would be helpful.

I traipse down the basement steps to the laundry room and search the girls’ dressers – nothing. I look through empty laundry baskets, and behind chests on the floor. I’m literally down on my hands and knees crawling around. For some reason, I can’t let this go. I’m losing it. Clearly the problem is we have too much stuff, piles of things everywhere and I need to prove I’m still in control by finding this one thing.

There’s a neatly organized pile of Ariel’s socks and underwear on the bed that I have sorted, and while I jet back and forth putting away the girl’s other clothes, I ask Ariel to please put away the small pile. She makes a half-hearted attempt to scoop it up with one arm, and the contents spill out onto the floor. We laugh, but then when I come back in the room and see her pile, the one she was supposed to have put away, placed back on the bed instead of in her drawer, I tell her to get it done – all the laughter drained from my voice.

If I could have paused here for a minute or two to consider I’ve been up since 6:00 am, it’s now past 8:00 am and I haven’t eaten (a major faux-pas and contributor to my mood) then maybe the scene that happens next could have played out differently or at least been less predictable.

On my way down to the basement, I pass a rogue elastic – Ariel’s hair elastic – so I call to her to please pick it up and put it away. We make eye contact, as though that seals the deal, but when I come back upstairs the elastic is still there. As I stare at the elastic on the step, out of place and glaring at me, I snap.

“ARIEL PURDHAM GET OVER HERE AND PICK UP THIS ELASTIC RIGHT NOW! AND CLEAN YOUR ROOM – IT BETTER BE SPARKLING!!!”

I’m raging. I rattle a toddler-sized plastic Ikea chair against the floor for effect, like a chimp making an aggressive display.

Ariel stares at me wide-eyed. She sits immovable at the kitchen table, looking at me.

“GO! NOW!”

I storm upstairs and out of view, planning to tear through every single one of my drawers until I find my black shorts. I yank open the first drawer within reach – my pyjama drawer – and there are the black shorts, sitting plain as day on top of the pile. I was the one to have put them there the night before, mistaking them for pyjama bottoms. I silently pulled the shorts on, still brooding, and went into the bathroom to splash water on my face. As I leaned over the sink and looked myself in the mirror, the idea hit me. Rage in all of its forms: choosing rage, being rage, feeling rage is “I don’t care.” Rage is I don’t care. Love, on the other hand, is I do care, let’s figure this out together; love is acceptance and patience. Love is “I care.”

As soon as the realization set in, my anger and frustration melted away, because I do care.

I went to Ariel and apologized. She hadn’t made things easier on me, but there were a million other ways I could have handled the jobs I needed her to do that didn’t involve yelling and raging.

Love is choosing the hard way. Love is putting in the work.

It’s obvious to me (especially now that my lost thing is found, and I’m no longer tired or hungry) that I was projecting my rage onto Ariel, but I couldn’t think about that in the moment. Rage is blinding and all-consuming, and rage doesn’t care.

I remember hosting a dinner party once with two other couples and the discussion somehow shifted to the wives’ dispositions. My friend’s husband spoke up, “Oh, she rages!” he said of his wife, then proceeded to tell us a story of his wife throwing something down a staircase. I didn’t know if she would want to kill him later for saying that or not. I did know I would be mortified if Dan relayed stories of my outbursts. I didn’t speak up and admit that I also experience rage, but I should have. There’s a perception of women who nag or get angry as being – insert derogatory name for female dog or comparable here – but the truth is, as human beings, we all experience anger. Anger is okay. It’s rage – blowing the roof off the house – that isn’t okay. Rage is destructive. But anger? Women are allowed to be upset, and sometimes we should be. Often, we should be. Men are allowed to be angry, too. But rage over losing a pair of shorts? Come on, not worth the emotional anguish. Time instead to take a deep breath, think about what’s really causing stress, and get on with the day.

Good Reasons to Get Hard Core (or hard cover) About Reading

There’s a well-known reading scenario, source unknown, that has been passed around from teacher to teacher, then parent to parent, about the impact of daily reading on students and our children called, Why Can’t I Skip My Twenty Minutes of Reading Tonight?

The mysterious author suggests, “Let’s figure it out – mathematically!”

Student A reads 20 minutes a night of every week;
Student B reads only 4 minutes a night…or not at all!

Step 1: Multiply minutes a night x 5 times each week.

Student A reads 20 min. x 5 times a week = 100 min./week
Student B reads 4 minutes x 5 times a week = 20 minutes

Step 2: Multiply minutes a week x 4 weeks each month.

Student A reads 400 minutes a month.
Student B reads 80 minutes a month.

Step 3: Multiply minutes a month x 9 months/school year.

I think you get the gist of where this is going, but essentially, by the end of grade 6, if Student A and Student B maintain the same reading habits, Student A will have read the equivalent of 60 whole school days and Student B will have read the equivalent of only 12 school days.

One would expect the gap of information retained will have widened considerably and so, undoubtedly, will school performance. How do you think Student B will feel about him/herself as a student?

Some (more) questions to ponder:

Which student would you expect to read better?
Which student would you expect to know more?
Which student would you expect to write better?
Which student would you expect to have a better vocabulary?
Which student would you expect to be more successful in school…and in life?

Again, I want to emphasize I did not come up with this formula, but I find it impactful and worthy of spreading. When I shared this piece with Ariel, her eyes grew wide and she started saying, “la la la” to drown out the noise of my insistence. She was making it clear she will read on her terms, and that’s fine. Maybe you feel the same way.

If that wasn’t enough to sway you to make time for book reading in your life – let’s say you think you’re off the hook because you’re an adult who already knows how to read – let me share the results of some pretty compelling new research that I came across in Emma Charlton’s piece, 5 Reasons Why Reading Books is Good for You. And she’s talking about books in the flesh, not just magazines, newspapers, ebooks, audiobooks, podcasts or other online reading (though don’t abandon these worthy pursuits!)

According to a recent Yale University study, people who read books live two years longer, on average, than those who don’t, even when controlling for gender, wealth, education and health. The researchers explained that deep reading promotes emotional intelligence and empathy – cognitive processes that can lead to a greater chance of survival.

Want to sound smarter?

In addition to improving your emotional intelligence and empathy, according to an Oxford University Press Report, not surprisingly reading books also broadens your vocabulary.

If you want to live longer and stave off brain damage, exercising your mind is a key component of mental health. According to the Alzheimer’s Society, “Keeping your mind active is likely to reduce your risk of dementia. Regularly challenging yourself mentally seems to build up the brain’s ability to cope with disease.” Regularly engaging in active reading of challenging books is listed as an excellent activity to stimulate your brain.

A clear mind, a varied tongue and a longer life – what’s not to love? We haven’t even factored in the learning and entertainment factor! Book reading is good for you and the life of a reader is a life well lived. End of story.

Gra’ma Valley Says…by Valerie Hennell

(The following is an excerpt from Snapshot of a Soul Place in the land of special needs, an illustrated memoir written and illustrated by Kari Burk celebrating 25 years with her daughter Mielle who has Down syndrome. The book is a labour of love edited and curated by Mielle’s grandmother, Valerie Hennell, aka Gra’ma Valley.

Kari says:

Valley is Mielle’s grandmother by marriage and by choice. Her interest in my life as an artist and the mother of a person with Down syndrome is the foundation for Snapshot of a Soul Place.

When we feel support and encouragement from someone who recognizes what can be grown in the fertile ground of our person, we can begin to get down to the soulful work that is beneficial to both self and others.

Valley’s confident awareness that we would travel both the deep dark and bright light places kept our book project on wheels and rolling.

Gra’ma Valley says:

“My connection with Mielle did not come quickly or easily. At first I was startled by her honesty and unfettered laughter. It took years for me to find a comfortable place with this guileless being who welcomes me despite my awkwardness.

Then one day she invited me into her room – her sanctuary – and we began communicating in a way that wasn’t about words as much as intuition and trust. That’s when I started to understand that my clanking self-protective defensiveness is a kind of disability.

Mielle always has new insights to teach me. One day walking along the beach she looked up at me and howled ‘Valley, RELAX!’

Words to live by, Mielle!”

Writer, producer, publisher and poet, Valerie Hennell conjures projects for page, stage, CD and media. She has a Master’s degree in Creative Writing from the University of British Columbia where she launched a career that has spanned fifty years and ten countries. Her lyrics are sung by many; her recordings have been honoured with four Juno nominations, Parents’ Choice, NAPPA Gold and Canadian Folk Music Awards. Enthusiastic grandmother, kayaker and composter, Valley lives on Protection Island in the Salish Sea with her husband and long-time partner in life and art, musician Rick Scott.

To Give

My children bring out my best (and worst) qualities. I’m not sure if that makes me sound like a good or bad parent, forgetting that such judgements shouldn’t be made, but I know it makes me a human being. The resulting transformations and affirmations of self come about in two ways: the easy way, and the hard way.

Let’s start with the easy way, shall we.

The easy way was last night putting Penelope to bed. I’m fighting a cold, but she insisted on mommy’s presence and I know why. She is enchanted with our nightly ritual of oral story telling. As I laid downstairs on the couch, feeling miserable, but peaceful and resting, my eyes glued to the page of a book, she tugged away at my arm, “Come on mommy! It’s bedtime! You have to go to bed now! I need you!”

“Oh sweetheart, daddy’s going to tell you a story tonight.”

“No!”

“He’s going to tell you the story of the purple octopus.” Purple’s her favourite colour.

She considered this, and when Dan picked up the thread, playing along, she weaved her way upstairs and into bed. But sleep never came, and so I found myself by her bedside.

“Mommy, now can YOU please tell me the story of the purple octopus?”

Her poor daddy tried, but as though co-conspirators, Penelope and I huddled together waiting to hear the REAL story, the one her mommy would make up. I believe she was employing the same rationale Ariel uses when it comes to her lunch cesar salads. I wash and cut up two pieces of romaine lettuce which go in a square container. I then put one scoop of dressing in a separate container and Ariel mixes the two at school. Salad made, voila! If her dad makes her salad, following the exact same steps I might add, it inevitably comes home uneaten, the comment being, “mommy just makes it better.”

I realized, sitting there at Penelope’s bedside and making up the story of the purple octopus who lived deep down in the ocean and wrapped itself around the submarine Penelope was riding in because it wanted a hug, that I was completely delighted and in my element storytelling with my child. Penelope was equally enthralled, which only served to reinforce this notion I have of my third child being a kindred spirit. We get each other. Our personalities jive. I rarely find myself feeling anger toward Penelope’s behaviours because I understand her so well; I know exactly where she’s coming from. So there’s that, but also because it is easy to do what I naturally enjoying doing in the company of someone who adores and appreciates my doing it.

These are the moments of parenting when I don’t have to stretch myself to grow, I’m simply doing what I love best, being myself, and my children are benefitting. These are the moments that effortlessly evoke my best self.
Now let’s talk about the hard way we grow as parents. The lessons we learn from parenting by taking the long way around.

Often to grow we need to fail. We need to get it wrong so we can figure out how to get it right. Elyse’s hair has been one of those things we have failed at many times, but for which we are striving to get right. For as long as I can remember, my attempts to brush Elyse’s hair have brought on tears. And I’m not talking about a few tears. I’m talking about wailing, screaming, outrage. Not every time, but often enough that there’s a sore spot there. The mere mention of the brushing of her hair can bring wrath and meltdown city (as Dan and I call it). We have tried everything when it comes to brushing her hair. Different combs, brushes, de-tanglers. Mom or dad brushing gently right out of the tub, or when her hair’s dried, or the next morning; Elyse brushing her own hair, keeping it long or cutting it short, brushing more frequently or less frequently, trying to build in a routine, trying to brush at her schedule and pace to varying degrees of success. We’re finally at a better place with her hair brushing – she does it mostly herself, but we still have to help her do her hair. I cannot say that this screaming and crying behaviour from Elyse evokes the best behaviour from me. Of course it doesn’t! At a certain point, her tears left me feeling angry, resentful, and helpless. This has to get done! What do you want from me? I want to scream. It’s hard to admit when you’re a mother feeling like she doesn’t know what her child wants or needs. Thank goodness for siblings and insight.

Over the weekend, Elyse had her dance recital. I should make it clear to you that dance and music are Elyse’s life. She lives through movement, and in moments of tension, we often find solace and common ground through music and dance. Knowing full well I would be on hair duty for the recital, I took many deep breaths in preparation for the tears that would ensue in getting her ready to perform. Even as adults, it’s hard to break a pattern of thought and to think positively about a situation that once, or many times, has caused you emotional hardship. Burn me once…

Anyway, Elyse was a champ getting ready. She let me brush through her incredibly long hair with a comb after Dan did her tub, and she did an initial brushing herself. She staved off the tears that eventually rolled down her cheeks for as long as she could, but then they came, accompanied by short outbursts and wails as I ever gently worked her hair into two buns. Her tears made me feel bad. A dance recital isn’t a necessity in life, and yet I was putting her through this hair torture – for what? But to counter that thought, you can argue that nothing is necessary, and damn it, if my kids start something and reach a certain point they are going to follow it through. Tears or no tears.

I remained calm and composed in my role as hair dresser, though coursing below the surface was a long-standing annoyance over the responsibility and the difficulty of doing Elyse’s hair; the lengths I go not to upset her, the inevitability of her upheaval. On top of it all, I don’t particularly enjoy doing hair.

Ariel wanted to be in the room to watch Elyse get her hair and makeup done. Had it been me in her shoes, I would have bailed when Elyse started crying, but Ariel insisted on being in the tiny bathroom with us, and she was the one who comforted her sister better than I could with comments like “Your hair is going to look so pretty, Elyse!” and “You’re watching Teen Titans! Is that your favourite show?” Standing there, hairspray can in hand, I was amazed by how much Ariel had inside of her to give. She had more of herself to give than I did, of that I felt sure, and in that same moment, I lived an experience I have been writing about and talking about for years; that through her tears, Elyse was also giving all she had to give. She was at her max and that was it, there was no more. Expressing her frustrations about getting her hair done through her tears was all she had to give. I was giving all I had to give too, but I could do better. I could do better and be better by realizing that my child was doing the best she can, and that each of us only has so much to give. Myself included. I could be better by realizing that accepting the people you love for who they are, and for what they have to give, is what unconditional love is all about.

I realized I was setting myself up to fail by expecting that Elyse should behave the way I want her to, the way society would dictate, instead of just accepting her for who she is. Nobody willingly wants to disappoint their loved ones through their behaviour. She is communicating in the only way she knows how. And with that idea came the thought and true understanding of she is doing the best she can. I am too focused on do it my way – the right way – as the only way, when of course that is not true. Elyse, all my children, show me regularly that there is more than one way of doing things. I would be wise to pay attention.

While Ariel pointed the way through her shining example of unconditional love, it was Elyse who forced me to come around the hard way, who reached for that most sequestered place of my heart and called it forth by saying, here, even when it’s hard, this is what it means to love me.

Inclusion by Kari Burk

(The following is an excerpt from the book Snapshot of a Soul Place in the land of special needs, written and illustrated by Kari Burk, with much gratitude and thanks to the author for permission to share.)

“Are you a monster?”
he asked while climbing around
at the playground.
“No!” she said with
a laugh.

Is that cat green?
Why is it green?
I’m not used to seeing a green cat.
Why does it have two different eyes?
Eeek! I’m afraid of it!
Is it a monster?
Where does it come from?
What happened to it?
I don’t know if I can be friends with it.
Yikes! That cat seems weird to me!

I created this Green Cat painting in response to Mielle being innocently asked by another child,

“Are you a monster?”

The love, care and acceptance shared within families and friendships
sometimes has to carry the weight of its opposite,
which is exclusion.

I remember how painful it was for me when Mielle was younger and some
kindly person would have to tell me that she couldn’t participate
in a class or program because she required one to one attention.
I would climb into the car and weep,
and Mielle, oblivious to the problem, would ask me, ‘Why mom?’

In her teens Mielle started talking about ‘kids’ eyes’ when we were in
a grocery store or park. I realized she was aware of children staring at her
because she is different and on occasion this would bring her to tears.
We’d suggest not letting it bother her,
that kids stare because they’re curious
and maybe she could say hello and make a friend.

But her feelings were getting hurt because she felt unaccepted.
She thrives on social interaction and is highly sensitive to failure.

I first saw a person with Down syndrome at eight years old in the corner store
and I did the exact same thing, I stared for a very long time.
The storekeeper was kind enough to notice my bewilderment and talk to me
about this special person which helped me not be afraid.

Children who are exposed to the world of special needs
are more comfortable with differences. Inclusion in whatever way possible
is extremely valuable for all concerned.

I try to stay positive for myself and Mielle but there have been many times
where I too have cried when a wall suddenly appears.

I have to look to my skills and practices to create a door or window in this wall,
to see it as an opportunity more than a struggle,
to move forward with good choices
and keep rowing the love boat gently down the stream.

Author and illustrator Kari Burk is a multimedia artist and landscape gardener who operates Muddy Tutu, Organized Grime and Garden Art in Castlegar, BC.  A graduate of Emily Carr School of Art and Design.  She’s a painter, poet, performance artist, musician, dancer, cartoonist and curator.  She has self-published fourteen chapbooks of poetry and exhibited and performed throughout BC.  Her art is available for sale and by commission.  Kari lives on a Kootenay mountaintop with one of her greatest works of art,  her daughter Mielle.