To MWS siblings – with love

Sometimes the innocence, simplicity and pureness of life with a loved one who has special needs catches you off guard.

I can be busy doing something that involves all three of my kids when that look, a certain gesture or the sound of a soft voice grabs my attention. I can feel it before I see it and when I look up I want to take in and be a part of it, but discretely, in a way not to interrupt it. What I see is Kevin looking at Sarah or Scott with such pure love and adoration. I also see Sarah and Scott reaching out to let Kevin know that they are by his side. From moments like these, I am comforted to know that the bonds are deep and lifelong.

When Kevin looks at Sarah and Scott with his inside out smile, a laugh and usually a pretty tight hold, he is letting know them know that they are his people. I watch Sarah links arms with Kevin or tussle his hair. Scott will put a protective hand on Kevin’s shoulder. Kevin knows that he can count on them both.

These days, Mowat-Wilson families share many family memories on Facebook. One day recently when I was scrolling through, I came across a post that reminded me of my kids. The sister looked at her brother with such wide loving eyes and the brother’s hand over hers was recognizable to any MWS family. The similarity between this photo and many of ours made me wonder about sibling relations in other MWS families.

This Valentine’s Day, in celebration of siblings in our MWS families, I wanted siblings to know that the roles they play in their brother or sister’s lives do not go unnoticed. To honour it, please share this post with friends and family, and invite them to visit our MWS Foundation page to help raise funds and awareness about Mowat Wilson Syndrome.

From a young age, many parents of our families wonder about the kind of relationships their children will develop, even more so for MWS siblings because the sacrifices aren’t small. Yet, moments like we see here with Jonathan and Abby build the foundation for what is to come. You may not know that many MWS kids are very particular about being touched, so this head-to-head contact shows a trust and love that goes beyonds words.

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Meet Jethro and Gabriel. This exchange makes you want to laugh out loud. The intimacy of a brother holding onto your ear, and the other brother letting it happen, shows a familiarity and a willingness to make each other happy. Kevin likes to touch Vikas’s ear, so perhaps this gesture is the equivalent of blowing a kiss for our MWS kids.

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Fabian’s love for his big sister Laura means everything. Hanging on tightly to squeeze all he can from the moment, Fabien will push himself to do difficult tasks to please his sister. Laura, with her gentle, kind, and compassionate demeanor, helps guide and care for her brother. It means the world to him.

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Romane, like many of our MWS children, took time to learn basic tasks: how to eat, walk and hold a pen. Her big sister is always her favourite teacher. Along the way, Romane has taught her big sister ( and her whole family) about unconditional love and how it can affect the person you become.

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For Kevin, most of his happiest skipping moments involve being in the centre of some goofy act and having everyone in the same place at the same time. More precious as everyone gets older, Kevin somehow knows he has to hang on to the moment tightly, take it all in and capture it so he can enjoy it then and later by himself or with friends.

Sharmas Green Park London June 2015

Thanks to the families who shared their photographs and stories. I’m pretty sure we made people smile today. Happy Valentine’s Day!

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Fifty years in the making

On September 4th, 2015, my mom and dad celebrate their 50th wedding anniversary.

Doug and Jane wedding photo
September 4, 1965

To mark the occasion, we had a small garden party in their backyard. It was a day full of memories and laughter, summer flowers and colourful decorations, videos and old photographs, a pretty cake and special toasts, and a board of fancy tea sandwiches.
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Here is the clan. We were short two to be our full group, but everyone that could be was there.
photoI was “nominated” by my siblings to welcome people and make a toast on behalf of the immediate family. I had practiced all week and I knew what I wanted to say, but when the time came, what emerged was more nerves and emotion than the toast I had planned.
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If I was to try again and give words to what my parents’ 50 years means to me, here is what I would share:

Having been around for many of those 50 years, I have come to understand that 50 years of anything is a really long time. Yet, when you get to that point and look back, you can’t imagine that so much time has passed so quickly.

Planning the party, I realized I didn’t know as much about my parents’ wedding day as I would have liked. Between my mom, and her friend Dorothy, I learned a few things along the way.

The wedding was a fun day. My mom and her friend Dorothy, the maid of honour, made their dresses and their hats. With my mom’s nod, Dorothy also credits herself with setting up the first date, convincing my dad to ask my mom to house party when they were 16. In Dorothy’s words, “they were an item ever since,” and that was 56 years ago, four children and nine grandchildren later.

This journey started when they were young (younger really than they wanted to tell us when we were that age). From it was built a family (four kids) in the space of 10 years, along with life in a small Ottawa-valley town, an African village, at the cottage on the lake, and later in a city we learned to call home.

With many happy, fun-filled days also came those days that test you to the core. With the party guests in mind, it occurred to me that many other couples and families could tell a similar story.

Yet, from this life experience, I have come to know and admire this group’s sense of wisdom and their appreciation of friendship and being there for one another. Hearing the jokes and the “remember when” stories, I hoped that the party memories created for my own children that day, and for my nieces and nephews, involved a glimpse into the full life of their grandparents and a sense of the value of lasting relationships with family and friends.
Bells-72I hope the photos give you an idea of the celebration of the day:
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Happy anniversary mom and dad! We wish you good health, much happiness and many more years to come!

A Laughing Party

Last Thursday Kevin turned 18…a milestone.

Kevin anticipates his birthday like no one else I know. He blows out pretend candles for an entire week before the day, wakes up several hours earlier for many days ahead, plays the birthday song on his iPad in case we might forget, and hauls out every photo he can find to check out who he will see.

Maybe it is the fatigue from the hype and the preparations that set in, but for me there is usually  a “what if”part of the day. It can catch me off guard because I don’t tend to think in “what if” terms about Kevin, but on his birthday I wonder. What if Kevin could talk, could read, could write? If he had gone away to school this fall like many other kids his age, where would he go, what would he study, how would he act?  Would he play hockey or basketball or ride the horses that he loves so much?

Eighteen brings about a whole new category of wondering and thinking about how to plan for the future, so much so that I felt like Kevin turning 18 would mean many mixed emotions for me.

The lead up to the big day started with a celebration at the cottage. Kevin entertained us all with his belly laugh as he was surrounded by his favorites: grandparents, aunts and uncles and cousins; horse magazines, chips and dip, tomato sauce and pasta; good food and cake with lots of candles that you blow out four or five times.

The New York celebration began at a school with a classroom party with cupcakes baked at school from Cafe Rebecca. The weekend party had us all scavenging through Carl Schurz Park counting the park benches, visiting Peter Pan, and finding the jogger who would kindly pose for a photograph so we could check that last box on the list. More cake and more candles were blown out with the help of friends and family.

Attending the Autism-friendly performance of the Lion King on Sunday was a perfect end to the weekend. Kevin loved the rhino, elephants and birds as they walked down the aisles. I loved that he could share the occasion of a theatre production with his brother, cousins and Grandma.

Thomas, a friend of Kevin’s, often remarks in the middle of a gathering that we are having a LAUGHING PARTY. It has become a favorite expression because it tells me that not all parties are laughing ones and they should be. From such simple words, I am reminded to enjoy the simple pleasures of a laughing party.

Kevin’s month-long birthday was a laughing party beginning to end. I wondered about none of the things I expected. Instead, I thought of where we’d be without Kevin’s goofy sense of humor and his love-of-life laugh. I felt thankful for the support we count on from family and friends and his team that challenges him at school. As it often does, what crossed my mind is when I came to realize that from this world of disabilities emerges a group of people with amazing spirit, determination, perseverance and ability. With many more actions than words, Kevin draws us all in because there are many more very important laughing parties to plan.

Happy Birthday Kevin!

Out the Back Door

The odd red maple tree branch peeking out of the trees at the cottage tells me that summer is almost over. Today is the last day. Despite a last summer project that involved painting the Canadian flag on the floating dock, there is no denying the fact that today is clean-up day. Our summer this year has been full of cottage time, New York parks and adventures, visitors and family, and making the most of having Sarah and Matt with us for three months that came and went so quickly.

At the cottage, one of the constant sounds is the endless slap, slap, SLAP of the screen door as each of us go in and out at least 50 times a day. When we lived in Manor Park, the in-and-out pattern was no different. Now that we live in an apartment in New York, I realize popping out the back door is a way of life for us and probably for most Canadians.
Besides summer’s end, this post marks the end of our first year living in New York City. If I was to think back on some of my observations about it, I would comment that certain ways of life for New Yorkers hit me out of the blue. As I try to take in this unique way of living, there are certain “I get in now” moments.

Working at home for the past year, I often get up from my desk to stretch and look out one of the windows of our apartment. What I usually see on our block is doormen hailing cabs, and people walking their dogs, taking kids to the park, carrying takeout to eat lunch at the park, with chairs, towels and books. It all looks completely effortless, so much so that I finally realized that the ease of this activity comes with it being a way of life. For New Yorkers, going to the park is our equivalent of popping out the back door. Because most New Yorkers, including us, live in apartments, all the beautiful parks around the city become everyone’s back yard. These parks are enjoyed by millions in a way I wouldn’t have understood before living there.

With Sarah and Matt, Kevin and Scott, we spent our fair share of time in the park this summer. Nobody logs more hours in our “own” backyard, Carl Schurz park, as Kevin. Besides loving to see the tug boats, the kids and dogs playing, this summer he enjoyed arts and crafts and music programs. While we missed the outdoor movie (one of my defining New York scenes from a movie), I liked hearing the big band and our friends commented on the hearing the jazz ensemble as they headed out one day.

Our Central Park memories include walking through the park and around the reservoir, talking a break on the Great Lawn while watching a random baseball game and Sarah and Matt in running races. Around us sat a group of teens hanging out and what seemed like thousands of people throwing balls and frisbees and having picnics. A blast from the past one day included a stop at an ad-hoc roller derby rink on a very hot day, where some of the moves were impressive and others were just part of the fun.

Another nice memory came on the day we all walked over the Brooklyn Bridge and then relaxed in the park on the other side. After the mandatory lounge on the soft green grass under the bridge, Kevin and Scott had a ride on the carousel and we all loved the ferry back to Manhattan.

As we trek back to NYC tomorrow after we drop Sarah off in Kingston, the happy summer 2012 memories  and photos will have to last us until next time. It’s a Sharmed life…!

True North Strong and Free

Having spent most of July in the Big Apple, it was a welcome escape this week to get to the cottage deep in the forest of the Ottawa Valley. For my family growing up and for my husband and kids, the cottage is a biggest part of what defines summer.

As we pack our bags to head back to New York, I am smiling at the thought of some favorite “only at the cottage moments.” This week’s reminders took place early in the morning when the thick mist lifted from the lake, late at night as I was falling asleep and could hear the raindrops on the tin roof, in the all-about-life chatter first thing in the morning that stops abruptly when people turn to their books to finish a chapter, as the wind meandered through the trees while I was sitting on the swing and with the buzz of the hummingbirds as they drop by the feeders.
I’m not sure whether everyone realizes it yet, but the days of NO TV at the COTTAGE are long gone. This week, among 18 of us, there are 3 iPads, 5 iPods and 4 laptop computers. There were more Olympics watched here this year than ever before. Peak usage came when the Canada vs. US Women’s soccer game was streamed on three different devices. Funniest thing was that none of the streams were at the same point in the game, so the cheering and yelling was a little off. All of the cousins were surprised how clearly we could see and hear Sarah from India. It was almost as clear as the 100-metre final that all 25 of us gathered and missed as we were watching TSN instead of CTV. Not to worry though, we heard the results after they were posted to someone’s Facebook and we watched the replay 30 seconds later.
The dogs got into the action too. With a cottage full of young new dogs this year, there was the odd tussle to determine the top dog, but the two-year-old little girl, Brynn, was the most dominant as she persuaded the dogs to go down the playground slide.
The major project this year paid homage to the swings. Three now instead of two, the swings sport a new wood frame and they are flanked by a spiffy stone patio. The prominence of this renovated area was shown when the ritual cigar-smoking was held there to replace the usual around-the-fire life-as-we-know-it event.
All in all, here’s how it went…with Sarah not here, Julie has the best tan and I am well on the way to winning the cribbage tournament. Kate waterskied for the first time, Matthew and Teddy learned to play Euchre, and Scott, Adam, Gabe and Vikas learned how to play LOUD Monopoly. Mom read the most books and played enough games of UNO for all of us. Heather learned the most from reading “informative” magazines.  Brynn was the dancing pink princess in the middle of a room with an audience of many.
Karen watched and read enough articles about the Olympics for all of us and she and Scott kept us up to date. Dad after all these years has earned the right to be the last out of bed, never too late to feed the dogs though. Matthew, Connor, Scott, Adam and Gabe tubed for hours on end around and around, always with someone different winning the day. Kevin went tubing too and even fell in, but he is still the best boat spotter there is. Vikas and Julie were the adults that went wakeboarding, proving that the adults can do anything that the kids can do.
Steven and Julie led the hikes in the woods, and I climbed up the steepest hill of my life! Gabe led the pack for eating sugary cereal and the year’s quota was more than consumed. We learned this morning that Brynn can ALMOST pour her own milk and Gabe finds this hilarious. Steven and Todd were the barbequers supreme with Todd cooking the beef for the PIG ROAST (a long story) and Steven taking on the day-to-day meals for 20.
One of the highlights of the week was our lunch at Taste Funatic in Calabogie, an event that reminded us to savour the deliciousness of basic ingredients in food, in life and with family. It is A Sharmed Life!