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World Down Syndrome Day 2017 passed on March 21st. This day of celebration and raising awareness is organized by Down Syndrome International to give voice to individuals who aren’t often heard in the mainstream. Although there has been increasing advocacy in Canada for education, opportunities and jobs for people with Down Syndrome, there is still a need for strong advocates who will help others listen to them and work alongside them to build a more equitable society for all people, both with and without disabilities.

My friend Brian Sloan is one such individual. I met Brian when I worked at L’arche Hamilton in 2010-2011, where he shares a home with other core members and the assistants that support them. My wife and I have remained close friends with Brian ever since.

Brian was born with Down Syndrome, a developmental disability caused by an extra chromosome. Down Syndrome can affect a person’s development to a variable degree – some people with the disorder live a very normal life going to school, working at a job and living independently. Others require more assistance.

For Brian, who is in his fifties, he learned from an early age to depend on non-verbal forms of communication and never developed speech. Had he been given some of the opportunities, support and resources that are now available to young children with Down Syndrome, this may have been different, but we’ll never know.

What’s more important is that Brian’s lack of verbal skills does not hold him back from developing close relationships with friends and communicating his desires and emotions. If you ever get a chance to visit Brian, you will instantly discover his incredible ability to help you feel welcomed into his home – most likely by taking your hand and suggesting you spend some time colouring with him. He can be quite convincing and his joy as you colour together will show you the worthiness of this often overlooked pastime.

My friendship with Brian has taught me so much about non-verbal ways of communicating. He uses a moderate number of signs, mostly for activities he enjoys, people in his life, and of course, his favourite foods. But his eyes and his smile communicate so much more than words. I know this when he pulls me close for a hug, when we relax on the couch colouring together, when we’re dancing and laughing along to music, and when I sit with him in silent prayer.

Brian has taught me more about friendship, presence and joy than eloquence could ever express. I forget my fear of judgment when I’m with him and I learn true acceptance of myself and others by his example. He helps me remember that all the ways I communicate with others are important, not just the words I use.

Thank you, Brian, for teaching me language beyond words.

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University ruined my ability to read books.  Before university I could plow through any book in a week, maybe two at the most.  Now it takes me months.  Maybe its because I try to read too many different things concurrently, rather than waiting till I finish one to begin another.  Maybe its because my brain is still fried from all that info they pumped into it at school.  Who knows.

A whopping five months ago I began reading The Boy in the Moon, in which Ian Brown reflects on his relationship with his severely disabled son, Walker.   As I ponder my relationships with the core members at L’arche and my role as discover of their gifts, I reflect on these words.

“What is he trying to show me?  All I really want to know is what goes on inside his off-shaped head, in his jumped-up heart. But every time I ask, he somehow persuades me to look into my own” (3).

“This constant questioning, filtered through Walker – does he mean what he’s doing, or not? – was also a model, a frame on which to hang the human world, a way of living” (39).

“The light her children threw on her life, and the darkness that hovered around them and their future, went hand in hand.  One was not possible without the existence of the other.  The most difficult part to accept was how complex life was, how bleak and at the same time how rich.  [Her daughter’s] mere existence was a form of remonstration, a reminder to look deeper, or at least to be alert.  Who’s to say they’re not happier in their world than I am in mine? And here I am feeling sorry for them because I’m trying to judge them by the standards of the world they aren’t part of.” (144).

“The disabled are a challenge to everyone’s established sense of order: they frighten us, if not with their faces, then with their obvious need. They call us to be more than we ever thought we would have to be” (150).

“Genetic tests are a way to eliminate the imperfect, and all the pain and agony that comes with that imperfection.  I am relieved there was no such test [when Walker was born], that I didn’t have to face the ethical dilemma it may soon present.  Because Walker is proof of what the imperfect and the fragile have to offer; a reminder that there are many ways to be human; a concentrator of joy; an insistent nudge to pay attention to every passing mote of daily life that otherwise slips by uncounted.  A test avoids all that, for better or for worse.  But if there were a more adequate system of caring for the disabled, if we were less frightened of them, if the prospect of looking after a disabled child did not threaten to destroy the lives of those doing the caring – if we had such alternatives, would we need a test at all?” (180).

“Walker’s [group] home is run by an organization that offers assisted living at a thoroughly professional level.  But how does one make a professional operation a home as well – a place full of compassion where people are forgiven endlessly?  Walker had a home where he was taken care of, but was it also a family? Would the place he was cared for feel like his home, occupied by a group of friends and measured by the collective inner life created by its residents?” (186).

Quoting Jean Vanier, “We begin in fragility, we grow up, we are fragile and strong at the same time, and then we go into the process of weakening. So the whole question of the human process is how to integrate strength and weakness. You become human by accepting your own vulnerability.  We’re in a society where we have to know what to do all the time. But if we move instead from the place of our weakness, what happens? We say to people, I need your help. And then we create community” (208).

I came back from vacation yesterday and got smacked in the face.  Apparently Christmas is less than two days away.  No, I have not done my Christmas shopping.  No, I have not paid nearly as much attention to Advent as I wanted to (yet again).  No, I do not feel the jolly, warmth of Christmas Spirit bubbling up within me.  Not because I am particularly against warm bubbly feelings, I just haven’t had time to get them simmering yet.

So on this Christmas Eve’s eve, I reflect.

I am cooking the Bird for L’arche Hamilton’s Christmas Day Feast.  A large portion of our community will be spending the holidays with family members or close friends, but the sixteen of us who will be here in the various L’arche homes will be gathering for a special meal on Christmas Day, and I am responsible for what one core member has informed me is the most important part of his Christmas.  I have not prepared a turkey on my own before.  (Though I do believe there was an instance in Katimavik involving a turkey and an oven set to 500 degrees.  But I don’t think we ate that one.)  My back-up plan this year is to show up with a large roasting pan full of bacon and scrambled eggs if something catastrophic happens in the kitchen.

By far, one of the best things leading up to the 25th has been singing Christmas carols with Bev and Charlie while Brian orchestrates from the couch.  Laurence is always the captive audience member, applauding graciously and with a huge grin at the close of our performance.  Silent Night and Away In a Manger are our strengths.  We get almost all the words right, though not necessarily in the same order, and certainly not in the same key.  Charlie, who has an incredibly high falsetto singing voice, comes in strong on the “I love thee Lord Jesus” verse in Away In A Manger, and Bev can hit some rather high notes herself in Silent Night.  She also performs a powerful solo on The First Noel.

There are days that feel like we are everything but silent and holy.  We lack stillness and calm, especially in the hectic Christmas preparations and the emotions the holiday stirs in some of us.  Our house is not always one of peace.  But we have our moments.  Gracious, loud and off-key moments, that pull me in and renew my spirit.  When I think I have found a new level of depth in my relationship with each core member, they find a way to pull me deeper.  I couldn’t imagine being anywhere else this Christmas than here with folks who have no where else to be, but here with me.  I am the one receiving the gift.

In all things, Immanuel.

My heart is heavy tonight.  My grace does not extend as far as it needs to.  My patience is thin.  I get tired and emotional and overwhelmed.

There are moments when I cannot believe how incredible my job is, sharing this life with the other members of my house.  And there are moments when I cannot imagine having the strength to make it through another day.

In these moments I wonder how far I could continue.

‎”If you want to walk fast, go alone. If you want to walk far, go together.” – African proverb.

When you share a house with other people, sometimes emotions can run pretty high.   One of the people I live with can get quite emotional very quickly.  It can be hard to deal with sometimes, because as her emotions rise mine tend to rise too.  Lately I’ve been approaching these situations differently, starting with encouraging her to take three slow deep breaths with me.  We take a long inhale, lifting our arms and our ribcage and then breathe out as slow as we can, focusing on the sound of air moving in and out.  The benefit is mutual.  It helps her calm down, gives me time to figure out an activity to redirect her to, and reminds me of what I need to stay grounded and calm in that moment with her.

As my life begins to flow in new ways, it can be hard not to cling to the shore, to old patterns, afraid of being swept away by the current.  I think I need to remind myself to just breathe, to be aware of all that life is bringing me these days, to stay present to the place where I am at, not afraid of what is to come and not dwelling on what has past.  Awake to and grateful for this present moment and the people I am sharing it with.

Yesterday was my first full day back at work after a two week absence from L’arche.  In one sense, coming back was stranger than I had imagined.  Alone in my room at Cornerstone, I felt displaced.  I think it just takes time to settle from one place to another and though I was only gone for two weeks, I have never quite settled into this room.  I’ve been back and forth to my parents’ house so much and was away in October for vacation, so this room has yet to really feel like mine.  I think this week I will put some posters and things on the wall and unpack that last suitcase and start calling this place home.

As for the rest of the house, nothing has changed.  In fact the only difference I noticed was that Laurence had taken down the Halloween decorations and replaced them with the Christmas decorations.  She is already wearing red and green to celebrate.  And it was so good to be told I was missed, and I really missed them too… these folks that I’m living with, assistants and core members, are becoming such good friends.  It was odd to not see them for so long.  To miss them and be missed.  I cherish this feeling.  And I cherish how simple it has been to rejoin the conversations… to sit down beside Brian and beginning colouring, without missing a beat.  To sing off-key with Bev.  To belong here.  It’s a good feeling.

And by far the best thing so far was tonight when Casey and I brought out our guitars and sang Yellow Submarine at full volume with Bev and Charlie, while Brian provided the percussion on his bongos and Laurence sat gleefully watching us all from her rocking chair.  It was a powerful sight and sound to behold.  And I was struck by the appropriateness of the song… living together, in this crazy house, moment to moment, with friends around us in the Hamilton community.   Sky of blue, sea of green.  The best part about singing with Bev and Charlie is that they have no self-consciousness about the quality of their own voices, they just belt it out for the sheer joy of sound and melody, freeing me to just sing without fear of being judged.  When you’re with someone who fully accepts themselves, in gift and weakness, it frees you to do the same.

There are a couple areas of life right now that are just lining up so nicely.  I think I knew from the moment I came to Hamilton it was where I wanted to be.  It’s incredible to really feel like I’m in the right place at the right time after struggling so long to figure out where that was, to now feel like life is flowing, not stagnant, and there is direction, like I can breathe deeply.

I was reminded tonight of a poem I’ve posted before, The Summer Day by Mary Oliver.  After describing the idleness and blessing of observation, the still prayerful watching of insects and blades of grass, she asks her reader “what is it you plan to do with this one wild and precious life?”  My plan is to live it.  Here in this moment, aware of all that I am surrounded by.  Authentically and with passion.

I realize I haven’t actually written very much this month.  The truth is I feel like I’ve hardly been in the house at all, barely begun to know the core members and assistants with whom I now live.  A week into my new role at Cornerstone House, I developed what might be an allergy to something, or might be a skin infection… no one is really sure.  Needless to say, for a while sleep did not come easy.  So I was off sick and then back for a bit and then off again and back for three days, and then suddenly it was time for my vacation to begin.

This past Wednesday, the L’arche Hamilton community gathered for our weekly prayer time with a special focus.  Earlier we had been given sheets of paper with questions about what it means to belong to community.  Core members and assistants alike were asked to come prepared to share stories, thoughts, art or music that reflected times of struggle in community, our hopes for our future in L’arche and what specific things help us to grow and participate more fully.

As I sat with Charlie, Beverley, David, Casey, Laurence and Brian (my Cornerstone family) reflecting on these questions, I realized that being off sick was not the only thing that has kept me from writing since I moved.  When I began at Sherman House in May I expected to be there for a while and spent a considerable amount of time intentionally rooting myself in my relationships with Alice, David, Richard, Doris and Attila.  The move unsettled me.  I still see the members of Sherman House on a regular basis but nothing can replace the depth of relationship that is shared when people live in the same house.  I miss those moments – resting on the couch with Alice, grocery shopping with Attila, the moment Richard came downstairs each morning smiling, Doris’ voice when she was excited, or David’s wit.  (I have a habit of drumming on the steering wheel while driving and David frequently scolded me for the behaviour.  Once when I claimed I couldn’t help it because I had ants in my pants, he quickly responded “I think you have ants in your brain!”)

I’m still finding these moments of grace with my new housemates too, when Charlie tells a joke, or Brian holds my hand, when I greet Laurence in the mornings and Bev tells me secrets and smiles mischievously.  But in general, I have felt so much less present.  As we talked on Wednesday afternoon about what we would share at prayer, I realized what has held me back – I am afraid that I will be asked to move again.  The uprooting from Sherman has left me a little more hesitant to nurture deep relationships, to risk love.  I desire stability for my future with L’arche.  Rootedness.  To be settled and home for a significant period of time.  I know nothing is permanent and my path will likely wind down different roads at some point, but to be at Cornerstone for now, present to those I live with, I have to be able to risk love.

So how does one spend their last evening as part of Sherman House?  After all the work is finished – the lunches made and the dishes cleaned up, journals filled out and laundry put away – the best way to relax is sitting beside Alice on the couch.  We’ve developed a little routine together that involves laughing until our guts are about to burst and then resting until it’s time to head upstairs for bed.  It’s thoroughly enjoyed by us both.

As I lay on the couch with watery eyes closed after our usual hysterics, I suddenly became aware of the silence in the room.  Just like children and pets, when your co-worker is too quiet you know you should be suspicious.  Of course I jumped up off the couch just in time to catch Manoj arming Alice, an avid water fighter, with a water bottle and encouraging her that I should be her target.  But Manoj underestimates the connection that Alice and I share, our loyalty to one another, and I had no doubt I could easily win her over to my side.  Within seconds I was in the kitchen filling another water bottle while Alice cornered Manoj in the dining room.

A brief chase ensued, which unfortunately left Manoj in complete control of the sprayer connected to the kitchen sink, and thereby armed and ready to fire at anyone approaching the kitchen via the main foyer, and Alice and I with only one water bottle.  I ducked into the closest bathroom to refill and handed the weapon off to Alice, who having removed her socks looked adequately prepared for a kamikaze mission into the kitchen to soak Manoj (despite the fact that he had shot ample warnings our direction and she was sure to get drenched).  Still, we knew he would not come out of this battle dry since the sprayer has a faulty leak that results in a steady stream directed at the wielder.  And Alice rarely misses her target.  We laughed menacingly.

Yes, with Alice on my side it all seemed perfect.  I would likely get out of this bone dry and triumphant over my mischievous coworker.  But I learned an important lesson tonight.  Although Alice and I are close, our connection does not run deeper than her love to see somebody she loves getting wet.  For a split second I saw the glint in her eye, but the betrayal shocked me into inaction and rather than bolt from the bathroom for the cover of another door, I backed up and trapped myself alone against my treacherous enemy.  It was everyone for themselves from here on out.  I had no weapon, she showed no mercy.  And Manoj watched triumphantly.

Still, losing has its advantages.  While I retreated to my bedroom to find a towel and dry clothes, the victors were left to mop up the aftermath.

Tonight will be the last supper I have as a member of Sherman House.  I’ve been asked to move to another house, Cornerstone, because of some necessary staff changes.  When I joined Sherman House in May, I wrote a reflection about my need to put down roots, having moved from place to place and room to room more than eighteen times since finishing high school.  I thought this would be my home for awhile.  Instead I find myself being uprooted from the soil and dropped into a new, albeit similar, environment.

Change is not something I naturally do very well.  So how can I embrace this move?  I believe that each L’arche home is full of both unique gifts and unique challenges, things you cannot experience as an outsider or a visitor, things that must be lived.  I know that I will grow in relationship with my new housemates at Cornerstone and that these roots will again find good soil in which to settle.  I know that I can again create home.

By far the most difficult part of this transition will be leaving the core members that I’ve built relationships with over the last four months.  Jean Vanier once said,

“We begin in fragility, we grow up, we are fragile and strong at the same time, and then we go into the process of weakening.  So the whole question of the human process is how to integrate strength and weakness… You become human by accepting your own vulnerability.”

By accepting the weaknesses and disabilities of those I live with, I have come face to face with my own.  Recognized that in some way we are all broken, we are all disabled.  There are no pretenses or expectations of perfection, my own or another’s.  They merely accept me as I am.

And in being accepted by others, I find myself better able to accept myself.  By discovering gifts among broken bodies, I begin to find my own.  In strength and weakness, I am whole.

My life has felt like chaos for the last week or two.

Yesterday, while trying to prepare for a birthday party for one of the other assistants:

– an assistant at another house had an emergency and needed one of us to go cover for them, leaving me alone to finish cooking and party prep

– we had a major leak during the afternoon thunderstorm (thanks to the workers who have been re-shingling our roof and left part of the roof exposed over the weekend)

– and while I was upstairs mopping up small lakes in the bedrooms, the lasagna burned, filling our whole house with smoke.

All just in time for the guests to arrive.

Sometimes I think I thrive in chaos, rushing from one disaster to another with efficiency and quick solutions, and truthfully, in the end the birthday party turned out great.  But chaos takes its toll on my well-being.  At the end of the night, there was little more I could do than lay on the couch beside Alice – the most empathetic and intuitive person I have ever met – and let her care for me.   After a few minutes of resting together, she got up to get a box of tissues, came over to me and insisted I remove my hat and glasses so she could (somewhat aggressively) dry my eyes.  I hadn’t been crying, but somehow she knew how much I wanted to, how heavy I felt.

In the chaos, I am not alone.

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