The Perfect Match, by Anna Vos

The day that we said “YES” in May 2014 changed our lives forever.

We were in the process of our second adoption from Ethiopia. This included mountains of paperwork, visits with our adoption practitioner, expired home studies and police checks, doctor appointments, and waiting for ministry approval. We were eagerly anticipating “the call” from our agency.

On May 13, 2014 we received “the call”! We immediately fell in love with the precious little boy with beautiful big brown eyes that stared at us from the computer screen. We could barely contain our excitement as we spoke on the phone with the director of our adoption agency. He wanted to know if we would consider this adorable little boy as a possible match for our family. Without hesitation we were ready to say “yes,” but our director calmly said, amid our excitement, “Just wait, Anna. They think that he might have Down syndrome.” Nonchalantly, I replied, “Oh, okay.” He kindly encouraged us to take the weekend to think and pray about our decision. That is exactly what we did.

Our decision did not change, even though this scenario was not in our original plans. We had completed a pre-adoption “checklist”, and it saddens me to say that we did not check off the box for accepting a child with special needs. We were approved for a child with “minor physical correctable needs”. We are so thankful and humbled however, that God had other plans for us!

After waiting for ministry approval (again!), more paperwork, and court dates, we finally brought our son, Seber, home after an agonizing two year wait. Seber adjusted incredibly well to his new family, country, climate, (although he was not a big fan of Canadian winter weather at first!), language, friends, and many other major changes in his life. He has learned so many new things and every day he astounds us with his many abilities! He has learned sign language, how to read (sight words), and how to speak a whole new language! He loves all sports and he loves playing with his four older siblings. Every day he is proving what the world thinks about people with Down syndrome is wrong, and we are so proud of him!

While recognizing the terrible grief, trauma, and loss that goes hand in hand with adoption, we also believe in the sovereignty of God and that He chose Seber to be our son. Seber has taught us so many things. He has taught us about forgiveness, unconditional love, patience, and how to have a more positive outlook on life by enjoying every moment. He shows us an unlimited amount of daily affection (he loves hugs, and kissing my hair!), and he never ceases to make us laugh. We have a strong supportive community within our church, school, and with the Down syndrome community. We have learned unconditional love and the importance of belonging for those with special needs and the important role that individuals with Down syndrome play in society.

We cannot imagine our lives and what our family would be like without our son, Seber. We are so thankful that God brought him into our lives because, for our family, he’s a perfect match!

Anna Vos is blessed with five precious children and a wonderful husband whom she has been married to for twenty-five years. She loves keeping busy with a variety of different things as a stay-at-home mom. Prior to her twenty year maternity leave, she taught grade five at Halton Hills Christian School.

Ten Things I’ve learned from Triathlon Training so far

Learning something new is hard.  Prioritize.  Last summer, in the spirit of marathon training, and pushing myself to get fitter and try new things, I thought adding in triathlon training would be a great boost to my fitness level.  The additional new challenge was a mistake, at least for me.  Having gone through it, my advice is to tackle one new sports adventure at a time.  The strenuous runs of marathon training left me depleted – too tired, much too tired, to tack on extra swims and bike rides.  I needed my two days of rest.  I couldn’t focus or fit all the workouts required into the week without doubling up on workouts (we’ll get to that), and I wasn’t willing to sacrifice my ultimate goal of completing a marathon by cutting out runs.  Last summer, marathon training took precedence; this is the summer of the triathlon.  One thing at a time, at least when you’re starting out.

Bricks is a real thing, and not the kind you use to build a house.  I’m discovering the joy and the burn of bricks, back to back workouts, this spring.  I’m definitely new to this, and working on adjusting and attuning my workouts to my body’s needs, but essentially you can do a swim, then a jog; a bike route, followed by a run.  Two workouts in a row, however you like, but usually, the run comes at the end.  In theory, you’d think that’s because it’s easiest, but from a fitness standpoint, I’m not sure if that’s true.  The other day I performed my usual long Sunday run, a ritual I’ve kept up faithfully through the winter.  For runners, the Sunday run is familiar, a long jaunt at a comfortable pace.  I made sure to knock out at least hour-long runs through the winter months to keep up some endurance.  On this particular day, I ran thirteen kilometers in an hour fifteen.  I hadn’t meant to run that far, but as the route played out – I had.  I gleefully accepted my family’s invitation for an early Mother’s Day brunch at Cora’s, fed my growling stomach, then proceeded home for an easy two hour bike ride with my friend.  Easy for her maybe.  Pushing to reach the peak of every hill we crested, my legs burned a deeper sensation than anything I’d experienced on my light-hearted run.  My friend laughed at me kindly, suggesting I may not want to run before our ride the next time.  I’m thinking she was right, but am still resistant to giving up my Sunday run, or even moving it to Saturday, or Monday (my day off), but I may have to.  I laid down, immobile for several minutes, on my bedroom floor after almost three and a half hours of moderate to intense exercise, and Dan just laughed at me, “You done?”  While, from a purest perspective, this might not have been a Bricks workout per se, with a Cora’s breakfast in between, it achieved the desired result all the same.  “Bricks” refers to the leaden feeling in your legs, especially after coming off the bike and going for your run, with back to back workouts.  Another combination I’ve now attempted and plan to repeat is the swim/run combo.  Though this combination of activities doesn’t play out in the Triathlon’s swim/bike/run sequence, it’s quite an effective workout.  On my first go, I swam for 20 minutes, about 30 laps, then ran for 30 minutes, 5.5 kilometers.  Fifty minutes of exercise midweek felt great.  The challenge was fitting this all in before getting the kids to school and an employed husband off to work.  You have to find ways to make it work.

Getting injured sucks.  Again, a year ago, while marathon training, I was running more kilometers than I’d ever run before.  I should have considered this was not the time to try something new.  I bought my first used road bike anyway.  My first real ride out on the road, wearing new special shoes with my feet clipped in to the pedals, when the path I was traveling on split, I waffled on which way I was going and came to a stop at which point my feet, firmly clipped in place, failed to catch me and I toppled over.  My gut instinct was to place my hand down to brace my fall.  Big mistake.   I would feel the strain in my wrist the rest of the summer and that effectively cemented my decision to put triathlon training on hold.  When you’re trying something new, like having your feet clipped in, you’re going to fall.  It’s inevitable.  I needed to be in the right head space for that, and know that bracing myself on my side was a better idea that catching the weight of my fall solely on my weak wrist.  I also should have put off getting clip-in shoes until I was comfortable on the bike.  I’ve been out a few times this year now, and I’m just allowing myself to feel at ease with the placement of the gears and how my road bike works out on the road.  Adding in locking my feet in place, as well as cycling on the road with all its inherent dangers, was too much for me to process all at once.  This year, I’m breaking it down a bit, and building my confidence by heading out with friends who know what they’re doing.  Which brings me to my next point.

Training with a friend is more fun.  I enjoyed having Dan as a running buddy for the two plus hour weekend runs we did in preparation for our marathon, but I was just as content to do my short runs on my own.  I actually love and relish the solitary nature of running.  Swimming at the pool, I don’t mind hitting the lanes solo, but when it comes to getting out on a lake?  It isn’t smart to swim alone; I’ve got plans to go with a friend.  Both of my longer cycles have been out with friends this year, and it made such a big difference, especially in my confidence on the road and my ability to get through the ride.  Halton Hills where I cycle is, well, as you can imagine, hilly.  My legs were burning through those rolling hills, but I felt a whole heck of a lot better knowing my friend’s legs were burning too, and that we’d be able to joke about it on the other side.  From a safety perspective, on the bike there’s safety in the peloton.  Cycling also takes a long time!  You can’t hammer out a five kilometer run in twenty eight minutes and be done with it.  No, no!  To get a workout in, you’re out there for at least two hours.  It’s nice to pass the time with someone by your side, and to have someone looking out for you and vice versa.

There are unwritten rules of the sport.  I look to my friends with experience to fill me in on the subtleties of the sport – I’m still learning.  As I stumbled through my first Try-a-Tri using my old mountain bike early last summer, I quickly learned my place as the newcomer, as we were relegated to the least desirable stations on the bike rack.  I learned about the extensive tattooing that goes on with black permanent marker up the back on my leg and across my arm, and how to hang my bike by the rear of its seat.  An official spoke to me sternly about when you have to mount your bike – was it before the start line?  And how you must do the inverse on the way back, dismounting and walking across the line, which makes no sense to me.  I’m going to have to check that again, before my next race, because there are penalties if you don’t get it right.  I tried to bring my phone out on my ride with me and was stopped by another official.  “You can’t bring that out there.”

“I’m using it to track my distance,” I quipped back, trying to appear like I knew what I was talking about.

“Hmm, okay.”  They had announced this asinine rule about phones being allowed on the bike course ONLY if used as a metric device.  I now have a watch, and will leave my phone behind to be picked up for the final run segment of the race, as I love my tunes.

There’s an unspoken motto between cyclist to “look after your own”.  Fooling around by myself one day, cycling through my neighbourhood, testing out my new road bike then stopping before crossing the road, a cyclist dyad came to a halt across from me on the other side of the street.  “Do you need any help?” they asked.  Did I look like I needed help?  Probably.  “No, I’m fine, thanks.”  I waved them on, slightly embarrassed.  They lingered.  “I’m almost home,” I assured them.  Cyclists look out for one another, and a cyclist pulled over to the side of the road, their wheels no longer in motion, may need a hand.  It’s nice to know I’m becoming part of a community.

Swimming, on the other hand.  I swam in the fast lane at the pool for the first time the other day.  I’ve been swimming regularly over the last year and building up stamina.  When I started, I had a hard time finishing a lane of front crawl properly (despite loving swimming my whole life) and now I can swim fifty laps in about half an hour.  I’m not breaking any speed records, but I’m happy with how I’ve improved, and know I will continue to do so.  Anyway, when I arrived at the pool during my usual time on Saturday morning, I looked around and the fast lane had the least amount of swimmers, so I hopped in.  A friend of mine leaned over from the medium speed lane, “Oh, you’re in there now, are you,” she said, a sparkle in her eye, “Watch out for the big girls.”  Well, truth be told, I was jostled, nudged, and passed as these “ladies” somersaulted past me and rocketed themselves off the wall.  Once I came up to breathe and ended up sputtering and choking on water that was kicked in my face.  I loved every second of it.  The big girls obviously have swim experience dating back to the womb, and ran through their drills like clockwork.  I admired their competitive spirit, and I figured out how to stay out of their way.  So unspoken rule number one, don’t go in the fast lane if you can’t handle the heat.

A runner does not a triathlete make.  A word about fitness and transference.  I do think I am a better cyclist because of having my legs trained for running.  Better than I would have been had I not been a runner, at least.  But being a good runner, a marathon runner even, does not make you a good swimmer.  Swimming, I’m coming to learn, is all about breathing and good technique.  I’m trying to read up about it, but I think investing in a swim coach may be worth it.  The swim kicks off the whole shebang, and for some, there’s the added stress of the open water and risk of drowning in a panic.  In my first triathlon last year – I did complete one Try-a-Tri before calling it a season – I completely underrated the importance of the swim.  I love swimming!  How hard could it be?  Hard.  Like, really hard.  Friends warned me that during the swim I might get hit or kicked in the face, and to watch out for flailing arms and legs.  I was the person with the flailing arms and legs others had to watch out for.  I confessed to another friend beforehand that I didn’t think I could sustain front crawl the whole way because I hadn’t practised very much (I’d only gone to the pool twice).  He looked unsure, shaking his head, but suggested maybe I could back crawl for a while.  In the end, during that short swim distance, I swam every stroke in the book.  Except front crawl.  I did front crawl for the first three stokes, came up sputtering and choking on water (like with the big girls), and moved right on to breast stroke, in my comfort zone, which is not exactly known as being the triathlon stroke of choice.  I know I made it onto my back at some point too.  And sideways.  On both sides.  Yikes.

Train hard and reach for a goal.  This year, I’m approaching triathlons as my sole focus, and have put more effort into my swim and bike training.  I’m incorporating weight training and stretching through yoga into my training as well.  I hope this will make me as prepared as I can be for my second ever race, and that I can finish it feeling depleted, but happy with my preparation.  I have a secret goal, too.  I usually keep my goals to myself, but it sometimes helps to share them.  I want to complete the Sprint distance this year, not just the Try-a-Tri, which increases the length of the swim to almost double, and increases the cycle and run distances as well.  It’s the swim I’m worried about, and I think that’s what the majority of triathletes would tell you.  Nevertheless, by the end of the summer, maybe even my first race – we’ll see – that’s what I’d like to do.  I’m not the kind of person who jumps right to the marathon distance, never have been.  That’s just not me.  Instead, I’m the person who makes the slow climb to the top, with missteps and close-calls along the way.  I dangle and scrape by until I’m ready for the next pitch.  To those who start at the summit and tackle the ironman Triathlon distance which begins with an almost four kilometer swim, followed by a 180 kilometer bike ride and ends with a full marathon, I salute you, and maybe I’ll meet you there one day.  One move at a time.  If I do, there’s going to be a tattoo involved, a real one.

There’s a lot of gear involved.  Getting into triathlons is expensive!  Being a runner is awesome.  All you need is yourself, some workout gear (any old t-shirt and a pair of shorts will do), and a pair of running shoes you need to swap out every once and a while.  Done and done.  Okay, if you want to get fancy, you can add in some sort of device and wireless earphones to play music, and a high-tech watch to track your speed, distance and pace.  You won’t get hurt without the extra gadgets though.  And heck, there are ultra-runners who race around bare foot and shirtless through the high-range sierra mountains.

Cycling comes with its own set of paraphernalia.  You’re going to want padded shorts, and even then – ouch.  There are racer tops, which I somehow got suckered into buying.  You’ll need glasses to protect your eyes against bugs and the sun, and a solid helmet to keep you from dying when you fly off.  There’s also bike shoes that clip into special pedals and the padded gloves to protect your hands.  And that’s just the gear on you.  Then there’s the bike, the priciest piece.  I’d never considered the type of tire, rims, seat, frame or brakes my bike had before, but those features are majoring selling points for hard core athletes.  I bought my road bike used, but new road bikes start anywhere from a few grand upwards of $10,000 or more, the price of a small car.  This does not interest me in the slightest.  I just want to get out and ride with the bare minimum of hassle.

There’s the pump you need to inflate the tires and keep them rock hard for maximum performance, and the adapter, that little gold nugget, you need to enable pumping.  A light, reflectors, bell, water bottle holder and (optional) storage compartments to adorn your bike, as well as an odometer or other necessary device to track your distance, speed and cadence (pedals per minute).

With swimming, you need access to a pool, which unless you live in a temperate climate year ‘round, and have access to a lake or swimming pool, probably involves paying some sort of fee to use an indoor public pool.  You need bathing suits, to be sure, and I have tried swimming lengths in the pool without goggles and I do not recommend it.  I’ve also tried getting away with cheap goggles and learned the hard way why that doesn’t work either (because they don’t work).  Don’t forget that stylish plastic cap for your head!

But wait!  Now you want to race and you’re going to swim in open water! For buoyancy, and protection from the elements you’re going to want a wetsuit.  You can rent one for about $50 or, you can do what I did, and buy one used or new.  I got mine used for $100, and have used it more than twice, which is nice, with plans to use it more and get my money’s worth.

Being involved with triathlons is expensive.  At least initially.  See note above regarding gear.  Add in the cost of registration, getting to races, factor in any hotel costs if you need to travel and stay overnight for an early start and did you know, there is even a triathlon suit you can wear?  I bought one after my first race, though I now think it looks ridiculous.  Think of a one-piece cross between a bathing suit and padded bike shorts, and if you’re me, for some reason you’ll buy the one in black, pink and blue with polka dots.  I’m forcing myself to wear it this year, as a penance for the silly splurge.

So why put myself through the financial cost, the scheduling burden, the overwhelming amount of gear, the risk of injury and the challenge of it all?  I think I answered my own question with that last bit.

Multi-sport training is fun.  I love being active outdoors, and I love to challenge myself mentally and physically without putting too much strain on my body.  I think training for triathlons is a good way to accomplish both of those goals.  I’m new to the sport, and I hope to one day look back on this post and laugh at myself gently holding all the knowledge, training and experience from the ledge where I have yet to stand.  Until then, I’ll take things one stroke, pedal, and step at a time.

 

High Five by Debbie Boycott

Presents come in all different wrappings and packages. Of course, we need to open the gift to see the wonders it contains. Not so different, I think, when you are expecting a child.

While I was pregnant with Emily, I had no idea she would be any different than our three other children. She was very active inside me, and I gained a healthy thirty-five pounds. There were no indications that this birth would be any different from my previous ones. Emily weighed 8 pounds 8 oz. at birth, but she was three weeks early. This early arrival didn’t arouse any suspicions in us. Emily was nursing well. When she was born, we were in a room to ourselves for the first few days.

When Emily was two days old, a pediatrician was called in to see her. He was quite blunt and asked if we had a history of mental retardation in our family. At this point, we asked him “why the questions” and he replied the nurses in the nursery had suspected Emily had Down syndrome. He had been called in to observe. He told us that some of Emily’s features, such as her narrow, slanted eyes, small ears, and low muscle tone, indicated she had “Downs”. Emily didn’t have a simian crease in the palm of her hand, which was a common indicator, but this doctor had the crease!

Then the hardest work began, that of telling all of our family and friends. On the one hand, we were sharing sad news and I felt the need to encourage others and make family feel better. But on the other hand, at the same time, we had just given birth to a healthy little girl and we (mostly Dave) were ready to celebrate this.

Almost as soon as Emily was born, I went into “teacher mode” and began implementing programs to help her reach her potential. If the books I read said a baby with Down syndrome would walk between sixteen months and three years, by golly, Em was going to walk by sixteen months. We had an Infant Stimulation worker, Carol, who came to our home biweekly to work with Emily and I. Carol would work on Emily’s language and fine motor development while I took copious notes and made diagrams so I could remember the exercises to work on daily once Carol left. I transferred these exercises to check lists on charts so I could check off ten repetitions of each exercise daily. Carol was an invaluable resource to us, and because she could see we took Em’s development seriously, she invited a physio-therapist from Halton Region to come and do an assessment on Emily and see if she thought Em could benefit from physio input. Up until this date, thirty-six years ago, no child with Down syndrome was on this program in our area.

Mary, the physio-therapist, assessed Emily who scored low on her level of muscle tone, even for a child with Down syndrome. However, Mary could see we were willing to “put in the work” with Em and she became an instrumental part of our program. Mary began visiting other children with Down syndrome as well, and when the numbers became too great, she started group sessions in Milton where mothers would bring their babies with Down syndrome to a central location, and she would work one-on-one with each mom. To alleviate the problem of note taking, Mary conscripted me to be her videographer. I would videotape Mary working with each baby. Mary would transfer this video to a VHS tape which the family could take home and watch to review these important skills. Mary became a great family friend, and she is always inspired to visit with Emily and is so proud of her accomplishments.

I remember thinking that I was fooling everyone when I took Emily out and that no one could even tell she had Down syndrome. One time a lady came up to us in the grocery store and commented on Emily being “mongoloid”. After I recovered from the shock and outdated term for Down syndrome, I couldn’t believe she could tell! Years later, when I looked at pictures of Emily as a baby, I realized I was only fooling myself. I had wanted to “fix” Emily and make her the very best she could be.

I looked into the Philidelphia Institute who had developed a patterning program for children with Down syndrome. I met with a Mom who lived nearby and was on the program with her daughter. After seeing it, we felt strongly the program wasn’t for us. I did read their “Teach Your Baby to Read,” and implemented their flash card approach to building sight vocabulary. When Emily was sitting at various times throughout the day, I would flash the cards in front of her. I made books for her to read from family pictures. By the time Emily reached kindergarten she had quite a large repertoire of sight words, which gave her a bit of a head start.

I did feel Emily was blessed to have siblings to mirror and to love her. She took her place in the family and truly owned her spot as the fourth child, second youngest. She was Mark’s big sister. The children pitched in as much as they could with these daily exercises I put Emily through. When she was learning to crawl, we put a towel under her tummy, which Beckie held up and I would position myself over her and use my knees to prod her legs forward and my hands would move her hands in the proper alternate pattern. I did wear out a pair of jeans in the knees doing this! I remember feeling like Dave got to be the “fun guy” when he got home at night. He would tumble and play with all of the children and wrestle with them on the carpet. He was always wonderful at that, and once he arrived home he was all theirs. The girls took dance lessons, and the boys played rep hockey, and they all participated in Kids Club and Sunday School. Wherever we went, Emily came along and we found all of our friends and family were extremely supportive of Emily and very interested in her development.

When I pictured Emily growing up, I thought her intellectual development was of supreme importance. I guess that is why all of this stimulation was so important to me. In hindsight, if I was making suggestions to new parents, I would stress the importance of social development. As with all children, responding to others in a kind, compassionate way, making eye contact, creating a healthy self-image, are all essential for making friendships, working in a job, taking instruction, enjoying others, and showing compassion and empathy for others.

Emily has always embraced her faith. Faith has never been an issue for Emily. Faith in Jesus just makes sense to her. Her favourite part of the church service is worship. She loves the singing. She does listen to the message and can be very moved emotionally by it. If I am away one Sunday, Emily takes notes for me so I don’t miss out. She copies the sermon points from the overhead. This wasn’t a request from me (I never thought of it), she just picked up the slack. Over the years, Emily has helped in the nursery, and served at seniors’ dinners at our church.

As I mentioned earlier, all of our children participated in competitive sports both in our community and at school. Emily went to watch and cheered for her siblings. When she got a little older, Emily started gymnastics, then ballet, recreational soccer and swimming, all in community programs. When Emily was thirteen, Dave saw an article in the paper about a swim program offered by Special Olympics. He took Emily the following week, and we look back on this as a watershed moment. Emily immediately loved the interaction with new friends, which nicely filled the lagging invitations to birthday parties and outings with school friends. We enjoyed seeing this interaction, and we also valued the fitness component and her ability to shine in her own right while having fun. Two years later, we heard about rhythmic gymnastics being offered through Special Olympics. This became Emily’s sport. She had always loved to dance in her room. Emily is also a natural performer and enjoys the spotlight. As Emily climbed the ranks in this sport, she excelled, and her travels took us to China, Greece, and Los Angeles for Special Olympics World Games, as well as countless competition across Canada, the United States and England.

Emily has had many wonderful opportunities to develop leadership qualities through our local Down syndrome association, HDSA. The Graduate Group plans and organizes social events for their group. As well, these young adults volunteer at HDSA events such as our yearly Gala in March, the Holiday Party, the annual Family Barbeque, and of course, our annual Go 21 walk event. Emily and her good friend, Adelle, go “on tour” in March and speak at many local school assemblies sharing about people who have Down syndrome and highlighting their abilities.
Emily works one shift each week at Boston Pizza in Milton and volunteers at the Darling Home for Kids. She also helps every Tuesday at Foxfield Stable and works with the horses once she has finished her riding lesson.

Dave and I, and Emily’s siblings and extended family, feel that God has generously blessed our family with a wonderful gift, in Emily. She makes us laugh; she challenges us to adhere to the moral standards we uphold. She strengthens our faith, makes us look at the world with awe and wonder, and she shows us what is possible through hard work and perseverance. She is very forgiving and most of all loves a good party.

Emily retired from competing in rhythmic gymnastics two years ago, and is a coach with the Georgetown Butterflies. She is now very involved in competitive swimming with Special Olympics. This past weekend, Emily and I were away at the Defi Sportif in Montreal. Emily was swimming the 100 IM (Individual Medley) and was out touched at the finish line by another athlete. Emily would get the silver medal. As the athletes swam to the outside lanes at the end of the race to clear the pool for the next event, I noticed Emily wasn’t leaving her lane. She waited until the athlete who won the race swam by so she could give her a high five. I had tears in my eyes when I saw what had transpired – an unnoticed event to most. This is our Emily. We are so proud of her.

Debbie Boycott is a retired teacher, mother to five, and grandmother of eight. She and her family were founding members of the Halton Down Syndrome Association, along with three other families. She lives outside of Milton with her husband Dave and daughter Emily.

The Story of Al the Star by Allan McNeill

My name is Allan McNeill. I am a person with Down syndrome.

I will tell you what my life is like with an extra chromosome in every cell in my body. I was slower than my five siblings learning to sit, stand, walk and talk. The hardest was learning to talk, saying words like “hospital” and “world”. I worked hard to learn all these things. My mom was always teaching me, while playing with me.

When I was four years old, I got leukemia. That was not nice, and I was on chemo therapy for three years. The good news is: I am totally better and very healthy today.

I began to enjoy food after my chemo and gained too much weight. So I went to see a nutritionist. She helped me lose sixty pounds. I have kept that extra weight off for many years, by eating healthy and exercising. My friends say I have a lot of willpower.

I swim sixty to seventy lengths, three times each week. I have always liked watching wrestling, and still do that on weekends.

Going to school was great for me. My teachers were wonderful. They were patient, and worked hard to teach me. My classmates would come to my house to swim and play with me. Some kids did not want a friend with Down syndrome – a retard, as they thought – which is a terrible word.

I learned to read, write, do math, but more slowly than my classmates.

I know that some kids with Down syndrome are bullied at school. That never happened to me, as most kids were very nice and helped me. One of my teachers set up a “circle of friends” club that helped me make friends.

I have been in Beavers, Cubs and Scouts. I have been trained as a Scout Leader. For the last fifteen years, I have helped as a leader with 15th Strathcona Scouts.

For twelve years, I was a part time volunteer in the office at a school.

Now, I work at Innomotive Solutions Group of Canada, a company that makes roll up doors for transport trucks and fire trucks. I really like my job and I am learning a lot. I plan to stay there until I retire. The company and my co-workers treat me well and pay me well, including profit sharing and bonuses.

On Sunday morning, I work at my church, as the Sacristan.

You can see that I am very busy, but I still have time, in the summer, to play golf with my brother and dad. We also enjoy a few Blue Jays games at the Rogers centre each year. Most of all, I enjoy talking with my girl-friend Sarah on the phone and texting. We go out on dates and double dates. Sarah is very nice and pretty.

I am a member of the Halton Down Syndrome Association Board of Directors. I am the only person with Down Syndrome on the board. My role is Director of the Graduate Group. This group is adults who have finished high school. We plan social activities, cooking classes, sports events and having fun together.

Every week, I meet with a tutor who helps me with new skills. We read together, talk, write, do some math, play games, cook and bake together and sometimes play a game of golf.

As you can see, we are never too old to learn. I hope to keep learning every day, until the day I die!

Allan McNeill is an active board member with the Halton Down Syndrome Association. He lives in Burlington, ON.

The Best I Can

Ariel is performing a gymnastics routine with a partner in the school’s talent show. Penelope is sitting rapt on my knee, watching her big sister’s stage debut. “I can’t believe I did that!” Ariel says afterwards. The talent show continues, for Penelope – as nap time comes and goes – the show drags on. She’s no longer in my lap. She’s sitting on the floor taking her shoes off and making flirty faces at the other kids beside us. Now she’s standing, swaying her whole body back and forth to the music, and that’s when I see something catch her eye.

“Balls, mom!” She points to the open storage room across the gym with the large red, yellow and blue bouncy balls in sight, a question in her eye. I try to distract her, avert her eyes, willing her to look back to the front, “Look! What’s that?” Four pink ballerinas take the stage, but she’s making a run for it, and now I’m holding her down by the hem of her yellow dress with the kitten on it, and the kids beside us are cracking up. Penelope loves this new game, where she is the star of the show. I check the time on my phone. We’re getting close to the end, almost there. Hang on. But there’s one last lovely singer to go, and Penelope breaks loose like the wild creature she is and makes for the ball room. Another parent tries to intervene; a teacher attempts to coax her out of the room, but Penelope just stands there, her resolve impervious, those glowing half-moons for eyes gazing up from a starry sky of curls. I don’t want to dampen her spirit, not one little bit, but as the parent you’re expected to have control.

I make my way over to my feral child, ducking out of the way of a few other parents, and I grab her. Truthfully, the disturbance wasn’t that big of a deal.

By now the principal is speaking a few words of farewell to the school secretary who is retiring. I have no idea what she’s just said because things quickly deteriorate from there. The next thing I know, I’ve made it into the foyer where my two other children are waiting, ready to go, and Penelope makes a bee-line for the exit, in her sleeveless dress.

I should mention the weather outside at this point in the story. The sky is on the verge of hailing pellets of ice.

Another parent is blocking the door again, helping me out, while I try to rally the troops, “Time to GO!!!!” while chasing after Penelope. I attempt to manoeuvre Penelope into her outdoor gear, but as I do so, she wrestles free of my grasp for the twentieth time by rendering her toddler limbs limp and lifeless. She’s a puddle on the floor one minute – the next she sprints for the exit again. This time I say, “It’s okay, let her go.” I reason, once she feels the cold she’ll let me put her sweater and coat on. Outside, freezing, she is still resisting. She’s fighting against herself, and her own stubborn tiredness.

Now the parents are filtering out of the school and my kid is screaming and kicking her feet in classic tantrum formation. I have a relaxed smile on my face that says, we’ve all been here before – nothing to see here folks – move along.

Toddlers are destined for trouble. They’re learning boundaries and testing their limits – and their parents’. Even as I type this, Penelope’s little face appeared around the corner. “This got wet,” she says casually. She’s talking about her pants, which are now soaked with pee. To clarify, I’m waiting for warmer weather to potty train. She got herself dressed in pajamas and decided to take her diaper off and not tell me. She was sitting on the couch when her “pants got wet.”

Back at the school, the tantrum is over, but my smile is wearing thin; beneath its cloak I’m tired after a long weekend with our three kids and my husband away, all of it culminating in this moment. As I’ve finally wrangled the little beastie into her outdoor clothes, and I’m strapping her tightly into the fold-up stroller I wisely brought along to ger her home, Elyse, in the foreground, throws her backpack on the ground, abandoning it before running off, and yet another kind parent brings it over to where I’m standing. I’m happy for the distraction of Ariel chit chattering along on the walk home revealing her excitement about the talent show experience. I’m smiling hard, for her sake.

I took the girls to my cousin’s baby shower on the weekend, where there were many opportunities to test my patience. Ariel disappeared the moment we got there, then five minutes later declared, “these are my new best friends,” pointing to the gaggle of children she instantly joined. Elyse played with the kids on and off, but then hovered by the entranceway, exactly where I did not want her to be. Elyse has gotten better about staying with me, but if that door were to open, the temptation to walk through it would be too great, and I may lose her into the deep woods surrounding the building. Penelope obviously runs everywhere, obeying no one or nothing but her own toddler instincts. I frantically surveyed the buffet table looking for peanuts, to which she is allergic. Fatal allergies, escape artists and disappearing children – what’s one to worry about? Just for fun, let’s turn off all the lights and add burning candles to the mix (there was a power outage). What could possibly go wrong?

My brain churned with all these impending dangers, and while I tried to relax and settle in with family, doing so with three girls running around in the dark made it nearly impossible. Still, I smiled, I gritted my teeth, and I smiled. You can hide anything behind a smile. A boiling rage, a festering sizzle of discontent, a sense of failure and shame, humiliation and angst. Pain. Fear. Rejection. Don’t let a smiling face fool you. Look past the façade into the person’s eyes. You can’t fake the smile in your eyes, or hide that the light has been extinguished.

My candle still burns bright, even with Dan on an extended work trip away. I had help from grandparents all weekend, and those parents who leaned in to give me a hand when I needed it most. My stores dipped low, but were not depleted. As my children get older, it gets easier and easier to manage on my own (not that I want to!) But everyone needs a break and time to themselves. Everyone could use a support system, and not everyone has one. Anyone who’s ever had kids knows what a toddler tantrum looks like, and if you don’t remember it’s because you blocked that time from your mind for self-preservation – not because it didn’t happen.

As Penelope flung herself through the doors into outside, in the background I heard a parent exclaim, “…but it’s so cold!” The comment seemed directed at me, at my child’s bare arms, at my parenting, but in the moment, I had more pressing concerns, like catching my toddler before she got hit by a school bus. It is SO easy to judge, but the people I care about are the ones who lent a helping hand when it was easy not to, when they could have turned a blind eye.

Which type of person are you?

An Ode to my Son on the Eve of your First Birthday by Kim Reid

Third (and final!) Chapter. A year ago today I was wishing I hadn’t waited so long. I was regretting my foolish pride, and the idea that I knew enough about labour to know when I was in the thick of it. I cried in the driveway, saying goodbye to your brothers, and falling into your Daddy’s arms, worrying that, against my midwives’ requests, that I would be delivering a baby on the side of the highway in the middle of winter. Your Auntie Sam and Nana promised me we would make it, and they were right. We JUST made it.

Minutes after arriving I was in a gown, and they were calling for backup and asking me not to push. But you, my sweet prince, were not going to wait for anyone. You knew where you were headed, and were ready to get there. Mere minutes after arriving on the maternity ward, the midwives placed you in my arms for the first time, and all was right in the world. You were our biggest little bundle, all blotchy and swollen, and I stared at you for hours, soaking in every crease and wrinkle on your sweet face. You have hands like Papa, bear paws, which even as a newborn looked so strong and secure. I was in awe of your strength the first time you reached out and grabbed my finger, strength that I still admire everyday as you continue to move mountains. Our people were there within minutes to shower you with hugs and marvel in your glory. Your brothers kissed your soft cheeks and wanted to be the first to hold you, sing to you, and show you their Spiderman toys. They loved you the minute they saw you, and have promised more times than I could count that they will protect you, support you, and love you forever.

Our first day home, I laid in bed with my four boys and cried. Hormones and fears took over my emotions, and as if he could read my mind, Henry said “he’s just so perfect, Mom, I can’t believe that he’s our baby”. And for a brief, but tremendously powerful moment, I knew that he was right. Those words echoed in my head while I stared at your sweet little face, in awe of your beauty, and filled with wonder about how you looked so different than your brothers in their first days. I spent hours laying in bed, inspecting every inch of you, tiny curved pinkies, adorable gaps between your toes, and long and defined creases across your little palms. And finally I said the words out loud, and then a midwife said them out loud, and then a doctor, and then they became a part of us. A part of us that first brought fear of the unknown, but now brings great pride and joy.

We were passengers on a roller coaster of emotions for the next few weeks, but through it all, we held you tight, watched you grow, and felt our tribe welcome us in with open arms and open hearts. I felt comfort watching your brothers hug and kiss and entertain you; I felt excited listened to Papa telling you about boat rides at the cottage and how you could sit on his knee and take a turn being the captain. I felt at peace when tears slid down my cheeks after coming home from the grocery store and seeing you sleeping peacefully on Nana’s chest while she read, or hearing Daddy singing you James Taylor from across the room. These moments, all of these moments and so many more, reminded me that we were exactly where we were meant to be, and who we were meant to be. Life with three under five can be crazy, and we had good days and tough ones. We got busy; birthday season was upon us, the days felt long, but the weeks short, and then before we knew it, spring had sprung and we were able to get outside and feel the light upon our faces again. It felt warm and familiar, and reminded us how lucky we are to have three beautiful boys to share our life with.

You, my sweet Duncan, were the perfect baby. You slept, you nursed, you smiled your sweet and infectious smile, you babbled, and you made the world, our world, fall in love with you. The past year has been the best of my life because you and your amazing brothers were in it; because now our family is complete, and because I could not have asked for a sweeter, happier, or kinder soul to share our lives with. You are easy to love, and impossible to forget. You touch the lives of those around us with your cheerful smile that shines so bright it lights up a room, and so warm it makes me feel like I could hug you forever and it would never be enough. Thank you for reaching out for me when I enter a room, I’ll never get over how amazing it is to feel your love. Thank you for smiling your biggest smile when Daddy, or your brothers, or Atti, or Izzy do something silly. Thank you for amazing us every day with your strength and determination. Thank you for cuddling into my shoulder and rubbing your cheeks against mine, and thank you for your sweet slobbery kisses. Thank you for loving books the way I do, and for loving music like Daddy does. Thank you for hugging your brothers when they need it, no one brings them comfort and makes them happy the way you do. Thank you for making me feel complete. Thank you for choosing us. Dunc, you are special. You are brave. You are strong. You are wonderful. You make us so proud. And I love you today, tomorrow, and forever with all my heart.

Kim Reid is a mother of boys, lover of learning, happiness enthusiast, and proud member of the Down syndrome community (our sweet baby boy, number 3/3 has T21). Our boys keep our hearts, our schedules and our laundry hampers full, and continuously inspire us to run fast enough to keep up, while living slow enough to appreciate the beauty in the little things.

Expectations by Karen Ellis Kendel

It’s funny how as parents we initially expect that our children will be perfect, despite knowing deep inside that we all have our flaws. I remember being heartbroken when my first “perfect” child was found to be quite farsighted at the age of two, and was prescribed glasses. I worried he would be bullied at school (many years into the future at that point!), that he would have difficulties playing sports, that he would have a hard time managing them at such a young age. In fact, he did fine – has never lost or broken them – is astoundingly athletic, and universally well-liked at school.

I remember being shaken when my second “perfect” child experienced an anaphylactic reaction to tree nuts at eighteen months, and needed to have an epi-pen in close proximity from that point onwards. My new worries involved trusting that anyone I left him with would have an adequate understanding of his life-threatening condition, and the knowledge of how to save his life should he inadvertently ingest a food containing hidden nuts. This took birthday party stress to a whole new level!

However, unexpected differences in my third “perfect” child were discovered before she was even born. When the midwife called two hours after our twenty-week ultrasound, I sensed something was off. This hadn’t happened in either of my previous pregnancies. She explained that they had noticed a couple ‘soft markers’ for Down syndrome, and referred us to a genetic counselor immediately. We decided on the non-invasive prenatal test (NIPT), only recently covered by OHIP, involving just a blood sample. This NIPT came back a week later from lab analysis in California showing a 99% chance our baby had Down syndrome. This news hit us hard. We didn’t have much personal knowledge of the condition, only general stereotypes that we came to discover were outdated. I was a physical therapist by training and had worked with many people with various disabilities, but only one of my clients had Down syndrome, and he had been a wheelchair-bound man in his fifties with severe leg deformities and a very poor quality of life.

The old-school Geneticist we subsequently saw was not very reassuring – presenting a lot of worst-case scenarios; a ‘doom and gloom’ approach. The option of terminating the pregnancy was floated around by various professionals, as if this unborn child did not deserve a chance at life, despite our firm responses that we *wanted* our child. That being said, we certainly grieved the “perfect” child we had been expecting. Then we picked ourselves up and started researching, reading, and reaching out to our local Down syndrome association. The new parent coordinators immediately showed up with their smiles and warm words of congratulations, and helpful, accurate materials. We could already see that a brighter future was possible than the dark picture painted by that first doctor. We took tentative steps towards connecting with this new community and felt supported.

One serendipitous encounter happened while walking home from dropping off our first-born at Junior Kindergarten, where he had started only a few weeks prior. The prenatal diagnosis of Down syndrome was fresh, and I was still coming to terms with it. Another mom was also returning home from JK drop-off, pushing a stroller with a sleeping babe. We started chatting, and this mom – Sarah – shared they had just moved to the neighbourhood, after a prolonged hospital stay with their new son after his birth. I had recently read that newborns with Down syndrome frequently have complications necessitating hospital stays, and so I tried to commiserate, telling her that I was six months pregnant with a baby who would be born with Down syndrome, and so might have a long hospital stay in my future as well.

She stopped in her tracks, looked at me, and told me that her son also had Down syndrome.

I had no idea. I was honestly just “practicing” sharing my news with people, and as a stranger, Sarah somehow seemed easier to tell than a family member! It was such a profound moment; we both felt goosebumps. Needless to say, knowing another mom in my immediate community who was only a few months further down this journey provided immense comfort, both then and now.

Of course, the journey is never smooth. At thirty-three weeks into the pregnancy, the right side of my face slowly became paralyzed over the course of an evening. We rushed to the ER, fearing a stroke, and in time learned it was “only” Bell’s Palsy. Unfortunately it didn’t resolve as quickly as it usually does – my body was more concerned with other pressing matters, like growing/birthing/feeding a baby! And so I experienced what it was like to have a face that looked “different”, to have people stare, wonder, question. To have difficulties talking, eating, tasting, hearing. Part of me wondered if this was somehow preparing me to be able to empathize with my daughter’s future experiences. We are such visual beings who value our appearance more than we might like to admit. Another part of me was secretly scared that my new babe would not learn to smile properly, as she wouldn’t see a “proper” example on her mother’s face… or that my children might somehow be embarrassed by my twisted mouth. The strong steroid and anti-viral drugs the neurologist prescribed, and that I took while pregnant against my better judgement, turned out to be of no use. Various other therapies I tried (acupuncture, osteopathy, essential oils) were no better. My face remained completely flaccid for four months, and recovery came only in tiny increments thereafter. More than four years later I still can’t properly smile, but at least I can blink again;)

Our daughter Kaitlyn arrived at full term, a healthy 7 lb. 13 oz., screaming her way into the world. My midwives were amazing, one even going above and beyond by coming in during her vacation time to be present for the birth. The on-call paediatrician examined her, and couldn’t think of any reason to keep us in hospital, and so said, “I guess you should at least stay for 24 hours”. This was significantly longer than we had stayed for our previous births attended by midwives, but given the circumstances, we were thankful. It allowed time to have an echocardiogram done, which showed only a minor Atrial Septal Defect, which had no clinical symptoms or relevance. We had the healthy baby we had prayed for.

One thing that had been worrying me towards the end of the pregnancy was Kaitlyn’s ability to nurse. Breastfeeding was very important to me, and I had read in several places that newborns with Down syndrome had a more difficult time with this due to generalized low muscle tone, along with altered oral structure (a narrow, high palate, for example) and general drowsiness in the early days. My first two children had been exclusively breastfed, and in fact, my second son had continued to nurse all through Kaitlyn’s pregnancy, despite the usual dip in supply. In hindsight, I believe this was a gift to Kaitlyn as tandem nursing them both during her early life meant he did the work of bringing in the milk, ensuring adequate supply despite her weak latch, and allowing her to grow and thrive during those crucial first days and months. She became a stellar nurser – a beautiful chubby baby. It turned out that I had nothing to worry about at all. This was only my first example of how, with a little support, she could blow preconceived notions out of the water.

In the early days, I remember reading a book about parenting a child with Down syndrome that advised teaching your child to read before entering the school system, so the teachers would be presented with clear evidence that your child could learn, and then would approach them with greater respect. While this all sounded grand, I really doubted that I would be able to do this. After all, I felt like I was barely keeping my head above water while taking care of three young children. My previous two typical kids were reasonably bright and had only learned to read at the relatively early age of four while in Junior Kindergarten, not beforehand. How was I going to find time to be able to teach my preschooler with Down syndrome to read, or even have the knowledge of how to do this? Well, once again, with some unexpected support, my daughter again blew past my expectations. Around the time Kaitlyn turned two, my own mother uncovered a dusty box of flash cards in her basement that she had used with me when I was a toddler. She sent them my way, and I decided to try a modified version of the Glen Doman method that my mom used with me – just a few minutes a day, a few words at a time. It turned out that Kaitlyn loved learning words on flash cards, and after only a few sessions could accurately either sign or say the word I showed her. In a few short months her word count was into the hundreds. I first noticed her spontaneously reading her simple board books out loud when she was only three, and now at four she loves reading more complex stories. We have yet to see how this will translate into more respect in the school system when she starts this coming fall, but I believe that it will open up pathways for her. My hope is that she will continue to inspire all of us to aim higher, and achieve beyond our wildest dreams.

Karen Kendel worked as a physiotherapist before focusing on raising her three children. She currently lives in Milton, Ontario.

What my Kids Crave the Most

A father bemoans the inequities of the Easter bunny’s delivery of bounty on Facebook. “Please parents,” he pleads, “can we just stick to chocolate and candies this year? So I don’t have to tell my kid why the Easter bunny brought his classmate a bike, and my kid only got chocolate.”

Aside: this post is in no way meant to undermine the religious underpinnings of the Easter holiday, but rather I’m focusing on its commercialization. On the pressure each holiday brings to buy my kids stuff.

I’m a person who loves celebrating special occasions, but what I don’t love is the pressure to buy into all the paraphernalia and trappings associated with each holiday. Well, I do and I don’t. Items that can be reused year after year are wonderful. When it comes to getting new stuff, I liked getting gifts as a child (and arguably, I still do), but as an adult I find it tedious work buying trinkets at best, and at worst: wasteful, unhealthy, and extreme. Spoiling our children to the max on special occasions borders on harmful not only for our bank accounts and the environment, but in what it’s teaching them to value. Let’s face it: an abundance of junk is overstimulating for children and underappreciated, even if that junk has a hundred dollar price tag on it. Even if it doesn’t cost an arm and a leg, too much is still too much. This is the trap I fall into: it’s cheap, so it’s okay for me to buy more of it. Take candy, for example. It’s easy enough to come across, but kids are going to get sick from eating too much of it – or cavities, or obese, or form life-long habits leading to an unhealthy lifestyle. Note: I said too much candy. I’m definitely not against some. If it’s too many toys, consider this. A toddler is more likely to play with a toy if they only have a choice or two or three in front of them, versus say, twenty. At twenty, the toddler walks away, overwhelmed. There is research to back this up: less is more.

Yet, season after season, I’m still out there, curating content to fill the stockings to bursting, ordering that last gift online to fill every nook and cranny under the tree because sometimes I get tied up in the myth that to show my kids I love them, I need to buy them stuff; and that if my love for them is superior, then so too should the gifts I provide for them. I’m guilty of perpetuating another myth of materialism – that it brings happiness – times a thousand. I buy enough chocolate eggs to feed a small army because these are the traditions I grew up with. I learned to associate more stuff with more fun! Because who doesn’t like getting more stuff? Especially as a kid who is entirely dependent on the adults in their life to buy them things. Precious, precious things! Like Seuss’s Once-lers’ thneed that everyone, everyone, everyone needs (note: no they don’t). Stuff, for the sake of stuff.

The Easter bunny visited our three girls. While we encouraged Ariel to write a letter to let the Easter bunny know her wishes as she bombarded us with requests, we were quick to remind her to keep her expectations in check.

“The Easter bunny isn’t like Santa,” I told her, “he doesn’t bring presents.” She nodded her head solemnly, but I know that’s not what she was expecting or hoping for because in the past, the Easter bunny has brought the occasional present. I don’t think there’s anything wrong with this, per se, except that my kids don’t need any more presents or toys, and you know what, they are happy, completely joyful, living with less of the things they don’t need.

Come Easter morning, on her way down the stairs, almost three-year-old Penelope picked up four hidden chocolate golden coins. She was so happy, she ran all the way back upstairs and climbed into bed to show me. “My gosh!” she was saying, “My gosh!” she couldn’t believe her luck, and she hadn’t even seen the baskets of candy downstairs yet; she didn’t even know about the egg hunt ready to go. Dan and I were thrilled for her, mustering up our best excited faces in response to her appreciation for the mundane in the early hours of the morning. Her glee turned my reaction into real and true enthusiasm. Her innocence left me feeling hopeful and inspired. If our version of Easter had ended right there for Penelope, it would have been a fantastic day.

In lieu of the toys a part of me wants to give my kids on Easter morning, I’ve taken up a practice my parents carried out for us in our teen years, the giving of essentials as gifts. Yes, there were chocolates and candies, but in addition each girl was given a new pair of shoes – and this is the important part – that she already needed, as well as a small stack of clothes for summer: a few t-shirts, a dress, or pair of denim shorts. Simple and practical. In a less than proud moment, I caved and got each girl a new stuffed animal too (of which they have dozens), but maybe we can overlook that and move on to how my children received their gifts.

The girls were overjoyed. Elyse especially gravitated right to her new rubber rain boots and held them up proudly in the air. She reached for the boots before even the chocolate in plain sight. “Look at these, mommy and daddy!” She needed new rain boots and I could sense she appreciated having that need fulfilled. Penelope walked excitedly around the house in her new runners, and wanted to test them outside, and Ariel was thrilled to receive her first pair or lace-up shoes. If tying laces doesn’t make you feel like a big kid, I don’t know what does. I spent a few minutes teaching her how to tie a bow, and she was off and running with a new skill. Each child played with their one new toy, the stuffed animal. Each child devoured copious amounts of chocolate. We all searched for eggs, which were then divided equally, and the kids had a really fun time, we all did.

What stuck out to me was the kids’ reaction to their new clothes and shoes. If it were any other day, they would be excited to receive new clothes, true, but it isn’t cause for celebration. Our kids are very lucky in that whatever they need, we are able to buy it for them. As childhood is such a transient time, each season generally warrants a new mini wardrobe. With three girls, we certainly do the hand-me-down thing, and also accept used clothing in good condition from friends, but even still, they get spoiled with new purchases. It’s so easy for them to take these purchases made on their behalf for granted; how could you not when they seemingly happen every season? By giving them items they need for summer, it was a statement: this is a special occasion, and receiving new clothing is a gift and something to be thankful for. And the girls were grateful because you know what? This clothing came from the Easter bunny! So it must be special.

Giving your children clothing on special occasions isn’t going to erase inequalities between families, but it is sending them the message they have many things to be grateful for and that it isn’t toys that make the holiday fun anyway – it’s family. Spending the time together, watching the girls’ reaction to their Easter baskets and their detective skills in the Easter egg hunt, made my morning.

What the girls actually receive means less than the traditions we are building as a family: decorating Easter eggs, the egg hunt, and a large bacon and egg breakfast Easter morning. The time we pour into our children, into each other, that is what counts.

As moms and parents, we put a lot of pressure on ourselves to get it just right, but my kids cared more about my willingness to engage in their games – my enthusiasm about their Easter treasures – then the actual treasures themselves. They were looking to me and Dan to gauge their own excitement. Well, except the chocolate. Sugar is sugar, and they’ve got that one figured out.

The best thing then, that you could ever give your child on Easter morning, or any day of the week, is your love and attention. Forget about toys and sugar, love and attention is what they crave the most.

Raisin’ Hell

At some point in adulthood, everyone needs a toddler in their life. Those belligerent little darlings. The things they say. The things they do. The mirror they offer into our own idiosyncrasies. This fleeting time of inane obstinacy. Defiance for the sake of defiance. Toddlers are, after all, miniature human beings learning how to regulate their emotions. One minute they’re up, the next they’re throwing a tantrum and crying hysterically, before tears dissolve into giggles – they were down, but now they’re up again! – at the sight of something as plain as a hat, or a sister, or a fluffy bunny rabbit you’ve made to hop up and down. Silliness reigns in the world of the toddler, as does autonomy of self. What begins as an “I do it” during the second year becomes a full on challenge of who exactly is the boss around here and what are the boundaries, if such a trivial thing as boundaries even exists, anyway.

Toddlers like to try on phrases and ask questions that make you blush or burst out laughing. Case in point, on our way to Sunday dinner at Dan’s parents’ house, Dan and I were engaged in a serious conversation about our jobs, our futures – real adult stuff – when Penelope pipped up from the back seat in her sweet little voice, “Daddy! Are you wearing pants?” She was genuinely concerned, so he assured her he was.

For the record, Dan normally wears pants, and there had been no aforementioned pants conversation that either one of us was aware of. Who knows what’s going on in that exploding synaptic toddler mind of hers? Pants or no pants? That is the question. I guess, in fairness to Penelope, Sandra Boynton characters are constantly putting clothes on the wrong body parts, or not at all, and these are the books we read to our children, the half-naked animal role models we portray, so of course she’s confused. Dan asked her back, “Are you wearing pants?” Her “yes” was confident in reply, and you could tell there was a satisfaction in knowing that she and her daddy had both got it right: pants for Sunday dinner, check!

Toddlerhood is also a unique time period in our lives where we seem to have a beautiful and simplistic window onto the world, because you see, the toddler sees things as they are; each new specimen of life (living or not) is a novel delight to their nascent senses. Second case in point, while changing her diaper, Penelope exclaimed, “Look at this, mommy!” holding up a piece of yellow Play-dough she’d be moulding in her hand, “this is beautiful!” and she stretched out the word beautiful, as though marvelling at its syllables as well.

Later, while bathing, and though I was downstairs clearing the dishes, and she was up with her dad, I could still hear her excitement, “Hey! I made bubbles with my bum!” Ariel, her seven-year-old sister, deeply appreciated this comment.

There is the trying on of words and phrases, and a great appreciation for an ever expanding world, and then there are the lived experiences; especially those you’d rather forget, like closing a finger in a doorway or falling off a stool or bothering someone bigger than you and getting bopped on the head for it. These hard won insights, also known as “learning the hard way”, are frequent during the toddler years. Maybe that’s why these are the years we mostly, if not completely, forget – in the name of self-preservation? Though surely, we retain the muscle memory of our falls, the sensory experience of burning fingers that time we took our mittens off in the cold; or the taste of chalky earth, the sting of soapy bubbles in our eyes. These memories come early and stay with us, I’m sure of it, even if we don’t completely learn or want to unlearn how to avoid them.

A memory I will certainly keep with me forever from Penelope’s toddlerhood years, in addition to her pleasant disposition, affable personality, our hikes in the woods, library time and gymnastics classes together, will be the time she shoved a raisin up her nose just to see what would happen.

I was driving along, completely ignoring my children in truth, as all good mothers do, and listening to an audiobook at that, (Girl, Stop Apologizing – I’m not!) when I heard a sob from the back seat. A quick look in the review mirror revealed Penelope was distressed.

“Ow, ow, OW!!!!” she wailed.

“Penelope! Penelope! What’s ‘ow’? What hurts? What’s the matter?”

I gave her a lunch box of snacks to keep her entertained. I shouldn’t be getting disturbed right now, but I’m feeling less annoyed, more concerned as her distress is genuine.

“Right here!” points to nose, “the raisin!”

“What!? Did you put a raisin up your nose? Is there a raisin up your nose!?”

“Yes! There’s a raisin up my nose right here.” Wail, wail.

Now, I have to tell you. I’m grateful for this kid’s competent verbal skills. I’m less impressed with her research methods.

“Okay, don’t worry! Mommy will get it out,” I say out loud. Inside, I’m saying what the fuck am I supposed to do now?

I decide I need to assess the situation and so I pull over into a Tim Horton’s parking lot. Thank god for Tim Horton’s everywhere. I tilt her head back and can see the raisin, barely. She’s stopped crying, and I stick my finger in to try to get it out, and it’s immediately evident this is a rookie mistake that will accomplish nothing. Think Adelle, think. I call Dan. He doesn’t answer. I text him, EMERGENCY, ANSWER CALL. He picks up this time. I let him know it’s not really an EMERGENCY emergency, more of an inevitable emergency if I don’t do something quick.

I have two children in the car with me. We were en route to one of Elyse’s appointments when the wrinkled fruit and Penelope became one.

Dan has no good ideas and is as perplexed as me. He suggests going to the appointment and asking if they have tweezers. Being the parent not directly responsible for the raisin kid, he, appropriately – not too flagrantly – finds the situation funny. I hang up with a new action plan in mind. I WILL make it to the appointment, but first we will stop at a pharmacy, buy tweezers, and extract a mucousy raisin.

I don’t need to tell you I got the raisin out, though I did, with some tears and much protestation on the part of my toddler. What I do need to tell you is more of a question: is this going to happen again? Or will she have learned her lesson? Will I ever feel comfortable putting raisins in her lunch pail for her to snack on again? Only time will tell and perhaps none of us will ever understand the intricacies and mysterious ways of the toddler.

On our stroller walk to pick up her sisters later that day, I offered Penelope a snack. She took it, then didn’t want it, then ADAMANTLY demanded it back, then refused it again a short while later, as though insulted I would ever have given it to her. I couldn’t help myself, “Penelope, you crack me up!” I could tell she liked that line, and was mulling over its meaning.

“No,” she said, “you crack ME up!”

Whatever you say, Penelope. Whatever you say.

Everyone has a Beauty

My friend Emily and I spoke to 500 elementary school students today in grades four to eight. That’s at least five hundred more kids that got to see what a person with Down syndrome can do. We weren’t able to fit in the whole student body due to time and space constraints, but after our talk, which went well, we had a few extra minutes to visit with the kindergarten students and show off Emily’s Olympic medals.

Three kindergarten classes were smushed into one, and while the kids fidgeted in their seats, I introduced myself, and told them a little about our talk with the older grades and why we were visiting the school. Emily stood beside me, adorned in her red and white Team Canada rhythmic gymnastics suit with the rhinestones, looking glittery, fit and fantastic. She showed off a few of her moves with the ball and clubs, and then it was time for questions. Predictably – if you know kindergarteners – once one child asked the question, “I like your outfit,” several more kids tuned in with the same question, which was endearing and Emily gave each one of them her undivided attention.

Their questions aside, the moment that struck me as enduring came in the aftermath of our act. At the moment I turned my back, a little boy came up to Emily and said, “You look beautiful.” Just like that. I turned to see his earnest face, and suddenly feeling bashful with what he’d said and my eyes on him, he ran back to his seat. Emily took it in stride; she’s used to this kind of adoration and attention being a special Olympic athlete, I imagine, but I’m still processing the remark.

What struck me are two things: one, that old adage, “Beauty is in the eye of the beholder.” That little boy had every right to tell Emily she was beautiful, because you could tell, in that moment, the way he saw her, she absolutely was.

And two, a lesser known adage perhaps, but one that I heard spoken at the World Down Syndrome Congress in India several years ago that has left a profound impact on me is that “Everyone has a beauty.”

Everyone has a beauty. Everybody.

Sometimes you just have to help others to see it.