my small comfort list

mycanceremotions

I’m drifting away from my breast cancer diagnosis and treatment from two years ago. Time gives me the ability to reflect, although I can easily be thrown back into the well of despair that epitomized that dark time in my life.

Sometimes I get messages from other women who have been diagnosed with breast cancer. I wish I could tell them: do this one thing and you will feel better. Alas, I have no one thing and no easy solutions. Healing is highly individual and one size sadly does not fit all.

I tried many things to calm the f*ck down. This is a list of the things I attempted over the past two years to make myself feel better. If you are going through a dark time for whatever reason, you will make your own list. It won’t look like mine. I tried a lot of things on for size. Maybe one of these ideas will give a wee bit of comfort, even for a little while as you find your own way.

1. Walks Outside
I promised my daughter that I’d walk every day. At first I begrudgingly kept that promise, then I became obsessed with getting my steps, but now I’ve settled down and look forward to my daily walks. I actually allow myself to enjoy the combination of fresh air, nature, movement and time to myself.

2. Mental Health Therapy
I tried the public mental health system first, but I was only was assigned four appointments at the Cancer Agency. Then I had to find my own private therapist. Asking around for someone who understood cancer stuff helped. Anywhere that advertises cancer supportive care would fit that bill, like Callanish or Inspire Health in Vancouver, or Wellspring elsewhere in Canada.  Do not be surprised like I was that our public system does not offer these services.  Publicly funded oncology care is medical, not holistic.

3. Small Comforts
I started scratching around for small comforts, like stopping for a coffee before oncology appointments and going for cheap sushi and to the bookstore afterwards as a little gift to myself. This helped me endure rude receptionists and cold oncologists if I knew I was going to treat myself well afterwards even if others did not.

4. Cancer Retreat
This is about finding ‘peer support’ or what I call friendships with others going through the same thing. I wrote about my experience at a cancer retreat here. Many retreats have subsidies for registrations to help you access them and if you can manage to take some time away. It is an investment in you.

5. Meditation
I’m no meditation guru, but I went to a few classes run by the Calm Monkey and picked up some basic tips. I used meditation techniques when I was under the radiation machine, waiting for the doctor to come into the treatment room or being squished in a mammogram device. Breathing and counting helped me calm down, even a little bit. I think it gave me back some control. Here is a quick and fast version that I watch in the mornings to start my day.

6. Music
When I drove to oncology appointments, I played the Tragically Hip really really loud on the car stereo. Yeah, Gord Downie had cancer and there is something about his heartfelt pre-cancer lyrics that speak to me. Courage, my word, it didn’t come, it doesn’t matter Courage, it couldn’t come at a worse time. Find your own Gord Downie (or borrow him.  He’s great).

7. Water
I was lucky enough to go snorkeling after my treatment. Sometimes when I can’t fall asleep at night, I think of that feeling of floating with the fishes. To re-enact that feeling, I tried out a few sessions at the Float House.

8. Love of Good People
I struggle to feel myself worthy of love. (Long story). So I purposely lean into hugs from people who love me unconditionally and not to push them away. This means embracing love from my husband and children, taking phone calls from my open-hearted, non-advice-giving friends who make space for the listening and I try to fully accept kind words from others. (This means I had to also get rid of the love of bad people who hurt me, which wasn’t exactly comforting but it was a necessary evil).

9. Podcasts
I listen to podcasts on my walks. Mostly the Good Life Project and Everything Happens. There’s a podcast out there for you if you are like me and struggle with finishing an entire book.

10. Mindfulness
I like to watch this video. I also sometimes think: ‘stay in the moment, this is all you have,’ so I don’t zoom ahead with fret about the future.

11. Purposely Seeking Joy
Yeah, I’m one of those people who push away joy too. I have to purposely seek it out and pause to enjoy it (see #10). Joy mostly resides in the little moments, like my son’s laugh or the birds chirping in the tree, which are always there for me if I just pause to pay attention.

12. Writing
Obviously I wrote a lot in all my various states on this blog. I also took a poetry class. This was healing for me, especially if I found out that my words were helpful to other people. You don’t have to share or publish your writing for it to be useful to you.

13. Reading
I kept a list of books that helped me. The Emperor of all Maladies helped me understand the stupid cancer. Audre Lorde’s work about speaking up was very important to me. Like music, find writers who speak to you.

14. Quotes
If I didn’t have the energy to read a whole book, I’d glom onto quotes from podcasts or Instagram or Twitter, like those from dearly missed @ninariggs, @cultperfectmoms and @adamslisa.

15. Art
I’m no visual artist, but my friend Lelainia kindly spent the day with me teaching me how to collage my photos from my radiation therapy days. This was extremely healing for me. In lieu of actually creating art, looking at art helps too, which is why bookstores, art galleries and museums are some of my ‘calm the f*ck down’ places to go.

16. Distraction
I was mostly too upset to be distracted. The geographical cure helps if you can swing it – even short road trip or a 20 minute ferry ride to Bowen Island was comforting. My friends kindly distracted me for taking me out for nice meals or meeting me for a drink too. Accept kind distractions.

17. Mindless Entertainment
Related to distraction is mindless entertainment. Here’s where I actually take a bubble bath and read an US magazine and enjoy it. (Note that bubble baths are buried in about 50 other things I do and bubble baths are not the only solution as the self-care movement wants you to think). Movies, Netflix (Ali Wong!) and plays work this way too. I can only watch comedies now, go figure. It is important for me to laugh.

18. Medication
Yeah, I’ll be honest here. If I’m really freaking out, I’ll take a prescribed Ativan. There’s nothing wrong with asking your physician for medicinal help. I also shamelessly like a glass (or two) of a full-bodied red wine. Marijuana has never done it for me, but I know of others who use it and bonus, it is legal now in Canada!

19. Being OK with Feeling Shitty
In the end, sometimes life is just shitty. My therapist said: maybe it is okay to feel sad or upset or angry. I used to shove those hard emotions away. Now I can say: this is okay. It will pass. I won’t always feel this way.

The wise Kimmy Schmidt said: “Do you think you can handle this for 10 more seconds? I learned a long time ago that a person can stand just about anything for 10 seconds, then you just start on a new 10 seconds. All you have to do is take it 10 seconds at a time.”

Get through the first ten seconds and then the second…sometimes putting your head down and getting through one step at a time is all you can do. Sometimes you have to lie down and take a rest. Mostly, cut yourself some slack.

To the women who have approached me who are in their own dark time, I want to say this: accumulate your own small comforts. You are deserving of finding peace in your hearts, to temper the suffering life offers us, even for a few moments.

Ps: I’ve written about the whole self-care/self-compassion thing here: Leaning Out and Beyond Bubble Baths.

The Wonder

kids

My kids: Ella, Isaac + brand new Aaron, 2003.

Note: this essay is based on my talk at The Wonder Years Workshop at the Edmonton Down Syndrome Society on February 25, 2018.  It was a true honour to speak to this group of new families who have babies with Down syndrome.

My youngest son is now almost 15 years old. The trajectory of our entire family’s lives changed when his doctor uttered the words ‘Down syndrome.’ I’ll never forget that moment – I can remember every detail – how the room smelled and even the shoes my doctor was wearing.

Aaron’s diagnosis was a significant time for me, bordering on the traumatic. The baby we expected was not the baby we got. I irrationally blamed myself, thinking I was too old and I had grown up too close to the refineries – irrational thoughts when I was neck-deep in grief.

As the years have passed, the intense grief has faded as I’ve realized that there is loss associated with parenting all children. No child is perfect and all children are hard work. But with typically developing children, we learn this lesson gradually as they grow up. With our kids with Down syndrome, we are told this immediately upon diagnosis. For me, it felt as if I had been hit by a truck.

We must honour the healing that comes from the dark times. For many months, I felt like I had a suffocating blanket thrown over my head. I was mourning the loss of the so-called perfect baby. I had to grieve for the baby I thought I was going to have in order to accept the baby I got. My baby boy did not allow me to stay stuck in the grief. Looking back, there were many factors that helped me move forward to see the light again. I want to share my story of gradually appreciating the wonder that is our son.

Coming to The Wonder Years is an important step to start building your own community. Finding other moms who had babies with Down syndrome saved me. Fifteen years ago, there were no moms groups, no EDSS office space – but us four moms with our tiny, flexible babies with almond eyes – found each other. We would get together every month at each other’s houses with our wee ones. Helga, Veronica and Karen were my saving grace. They knew what it was like to have an unexpected child with Down syndrome and we could talk to each other freely and without judgment.

Today Aaron is friends with these (now) teenagers, who he first met when he was 5 months old. He and Helga’s son Vincent spend a glorious weekend each summer on their family boat in the Okanagan – endlessly jumping off into the lake, tubing and engaging in rowdy burping contests. Aaron and Veronica’s son Andrew Face Time each other regularly – I can hear the two of them roaring with laughter on the iPad in Aaron’s room. These friendships in my new community began by helping me, a lonely sad mom – but have evolved into deeper relationships for our entire family, including our son with Down syndrome. Aaron needed to find his own people too. However you find your peeps – through in-person connections, via social media – it doesn’t matter. When you are ready, reach out. You will need each other throughout the years.

My personality is good for people – for love – like my family. –Aaron, age 15

Having Aaron in our lives has changed our entire family. He has infused all of us with wonder. He has two older siblings who were 6 and 9 when he was first born. His sister Ella, now 21 and in third year nursing school, reflected back on how Aaron has made a difference in her life:

Aaron has taught me to be more patient and more inclusive, accepting and nonjudgmental at an earlier age than most of my peers. Honestly, it is cheesy to say but he truly is a bright light in this world. He’s kind, smart and HILARIOUS and he changes the lives and opinions of everyone who takes the time to get to know him. He’s why I wanted to be a nurse – not to cure sick people, but to see the spark that is so often ignored in vulnerable populations.

Aaron’s older brother shares similar sentiments, adding that Aaron has greatly strengthened his compassion. And my husband, Aaron’s dad, emphasizes that Aaron has challenged him in ways he didn’t expect, but also warns not to underestimate your child’s ability to learn or enjoy the things you enjoy. (For example, Aaron loves swimming competitively, watching Oilers’ hockey and eating hamburgers just like his dad). The majority of our children’s genes come from their mom and dad – it is only the one chromosome that is extra. Don’t forget that our kids are more like us than they are like Down syndrome.

My friend KC offers up this wisdom: throw out the milestone charts and celebrate every hard-won achievement. Only surround yourself with family and friends who love and support you and your child, she says. Make connections with other families within your new community and keep them close. And be flexible in the direction you choose – there are lots of decisions about therapy, preschool, recreation that will need to be made. You will make the best decision at the time and it is okay if that choice doesn’t stay the same. As your child grows and changes, you will too. This constant recalibration is hard for those of us who want control and a crystal ball in life. I’ll add: listen to your heart; it will always tell you what to do.

Speaking of hearts, please remember to be kind to yourself in this new life. Find yourself safe spaces where you can feel all your feelings.   You don’t have to be strong all the time. Do more of what nourishes you. Often we search for meaning once we’ve had a child with Down syndrome – we do this through our necessary advocacy work to make the world a better place for those with differences. This is important work, but also remember to take time for yourself, your partner and your kids too. Changing the world is exhausting so it is crucial to take breaks and allow others to take their turn to change the world too. It is hard to be vulnerable and ask for help, but that’s what I’ve had to do.

As Natalie Merchant says in her song Wonder:

 I believe, fate, fate smiled
Destiny laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child with be gifted
With love, with patience, and with faith
She’ll make her way.

You and your child can – and will – live a good and rich life. Have love, patience and faith (whatever faith means to you) and listen closely to your child with Down syndrome. You and your baby are valued, worthy and loved. I promise that your child, above all else, will be the one to help you find your way.

shed your parkas + titles at the door

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The Stollery Family Centred Care Council had its first meeting in October eight years ago. Soon after the holidays were approaching, so we decided to have a Christmas party. Hosting a party with this newly formed group of people seemed like a natural thing to do.

It was wholly unofficial, but in cahoots with Heather, the Family Centred Care Manager, we went ahead and did it. In the early days, we embraced a just do it and apologize later philosophy. We were pioneers in a new land.

We had no budget and we couldn’t serve alcohol in a hospital setting (of course), so my husband and I decided to host at our house.

We sent out invitations to the entire Council – senior leadership, family reps, physicians, clinicians – stressing that this was a family party – partners and kids were welcomed. We made it potluck to cut down on expenses and I think I had a jar at the door for folks to donate to our booze fund. Heather and I wrote out personalized Christmas cards for everyone. I bought sequinned Santa hats from the dollar store for all the kids. I don’t know how much all this cost. There was no funding and it didn’t matter.

As is typical for a December evening in Edmonton, it had snowed and the roads were icy and awful. But our doorbell kept ringing and boots and parkas piled up in our entrance as more and more guests arrived.

Here’s what I remember: Serving cocktails on a silver platter at the front door. Children running wild through our house: kids jumping on beds, kids running up and down the stairs, kids pulling out all my son’s toys (Note: this was all awesome).

The Senior Operating Officer of the hospital was there – her newly-retired husband had cooked an amazing dish for potluck while she was at work and he had braved the roads to meet up with her at our place. Another senior director came with her two children and husband. Her kids were playing with the so-called ‘Stollery kids’ – our kids, the patients – who were a diverse lot, a collection of children with disabilities and medical conditions. Seeing them all zooming around our house – at varying speeds, with various mobility issues – was as it should be.

My husband standing in our kitchen, deep in conversation with a dad whose child had died at the hospital the year before. Me, checking on kids downstairs, standing in the doorway of the bathroom, talking to a PICU intensivist while his young daughters ran amuck around us. A neonatologist popped by on his way from his martial arts class, leaning against the wall in the hallway chatting with a mom. It was a houseful of people connecting with people as human beings.

My husband and I hosted this party like every other party we had ever had at our house. Our formula was a bounty of food, fancy cocktails, blaring music and an open door. For whatever reason, people showed up. I understand now how important the simply showing up is. The people who came to that party were providing evidence of their early commitment to the family centred care cause. For the staff, this was an unpaid, after-hours affair. For the families, this was the end of a long day. But they still showed up. I believe this evening was a tipping point. It was the beginning of culture change at the hospital.

There were Christmas parties like this for about three years. The amount of people involved in family centred care at the hospital expanded and outgrew a house party. The celebrations switched to summer barbecues at community halls instead, which was a natural progression of growth.

But those early holiday parties were special. They were intimate and inclusive affairs.   There was a complete shedding of roles those evenings. Titles were taken off along with the parkas and boots at the front door. There was a relaxing of tightly held positions with a cocktail or two. Meeting everybody’s partners and kids felt really important. By the end of that first dark December evening, we were no longer ‘professionals’ and ‘families.’ We were colleagues and blossoming friends.

If you are reading this and thinking that there’s no way a house party with your hospital staff and patients/families would ever happen, here’s my challenge to you.

If you really want to partner with the people you serve, you need to see them – and your staff – as people first. It is your job to remove all the barriers to create an environment where you would be able to host a party at your house. (YES AT YOUR HOUSE).

If this seems impossible, you have to take away the preconceived rigid notion of what it means to be a professional, ignore the policies and procedures forbidding socializing and fund the damn party out of your own pocket if you have to.

This is not a movement created around a boardroom table. Providing opportunities to lose your title and connect as human beings is the only way you actually seal this deal. Celebrating together – breaking bread, getting to know each other, toasting to the season – is a good way to start.

my many mentors

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Me, Laurene Black, Heather Mattson McCrady

Throughout my life, I’ve been blessed to have been gifted mentors to help me along my way.

My first mentor was my boss when I worked at Alberta Health (oh my) 25 years ago, when I was fresh out of university.  Her name was Nandini Kuehn, and she had the unusual mix of graduate degrees in English and Health Care Administration (a combination that I now possess).  From her I learned how to write a decent sentence (drop the dangling participles) and to overcome my paralyzing fear of public speaking.  She pushed me way out of my comfort zone by sending me around the province to present the new hospital funding formula to audiences of (sometimes hostile) health professionals.  This terror was a time of great growth for me.  After my mat leave with my first son, she invited me back to work on a costing project, where I learned even more about myself and dispelled the myths of what I thought I couldn’t do.

Zooming ahead, I learned how to be a good La Leche Leader from a number of exceptional mama bears, including my friend Maureen Andreychuk.  I summoned up my bravery to dare to be published through writer friends like Melissa Steele.  I learned to speak up for myself from Inger Eide, when I lived in Norway with her family.   I was saved from single mom unemployment by the very kind Shirley Groenen.

And finally, these two women pictured above introduced me to my current world of patient and family centred care.  Laurene Black just won a greatly-deserved Centennial Award from CARNA, her nursing association.  She paved the way for the incredible work at the Stollery Children’s Hospital.  From her I learned:  keep your head down, keep going and don’t give up.  Heather Mattson McCrady taught me, by her gentle role modelling, the crucial importance of holding space for families and health care professionals – and the value of active listening.

All these women are a little bit older than me, and a whole lot wiser.  The key for me has been to be open enough to accept their gifts, even if they offered hard lessons to bear.  Personal growth is damn uncomfortable, which is why most of us take great pains to avoid it.  When exceptional people cross your path, say yes instead of no.

In my short time on this earth, I aspire to live up to these words, which were kindly given to me by a mom I knew in Aaron’s old school.  Thank you Nandini, Maureen, Melissa, Inger, Shirley, Laurene and Heather – and many others – for lighting my path along my way.

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perhaps they are not stars in the sky

stars in the sky

The nature of my work in a children’s hospital is that sometimes the children of the families we care for die.  The nature of life is that everybody we love will eventually die, but we keep on loving them anyhow despite this terrible reality.  This is what makes us human.

I do not know the right answer about what to say when a child dies.  All I can do is not be afraid.  Not be afraid of reaching out to their loved ones, not be afraid to speak the child’s name, not be afraid of not knowing what to do.  All you can do is try.

My very first published essay was in 2002.  It was called ‘Put your hand in her hand’ and it was my reflections about my dear friend Maureen’s beloved baby Scott, who had died two years earlier.  It was about all the awkwardness and fear that comes along with supporting a friend after a devastating loss.  I was an imperfect friend, often with my foot firmly planted in my mouth, but the important thing was that I didn’t give up on her.

Fifteen years ago this week, that little baby left this world, but he has never been forgotten.  I dedicate this to all the families who grieve for a child. I look up into the night sky and see Scott and Avery and Matthew and Sydney and Kate and Haley shining down on us all.  Peace and love to them, and to those who loved them.

Put your hand in her hand
-by Sue Robins
(originally published in Chatelaine, March 2002)

Whether your friend is aching because of a divorce, miscarriage or another brand of heartbreak, only one thing you can do is guaranteed to help. Sue Robins explains.

This was not the call I was supposed to get. The day after my friend Maureen was to give birth to her third child, the phone rang. I picked it up and heart a halting choked voice. “Maureen’s lost the baby.” “What?” I asked, confused. It was my former husband. I was in Vancouver visiting my brother. “Where did she lose the baby?” Then I understood.

Maureen’s baby, Scott Thomas, was stillborn on a Sunday in December. He was a perfect eight-pound infant. When I finally saw Maureen after she came home from the hospital, she appeared small and frail. Her fact was consumed with sadness. What I most wanted to do was bring Maureen’s baby back, give her the baby she deserved, the baby she so carefully nurtured those nine long months. And I wanted to hold Scott in my arms, admire him and coo at him and buy him little baby clothes and have I-want-to-have-another-baby pangs when I was around him. But I could do none of these. All I could do was be the best friend I could be to Maureen.

In a time of crisis, true friends come shining through for you. During my divorce, good friends clustered around me like a supportive tribe of women. Others fell by the wayside. What are the forces, I wondered at the time, that make or break a friendship? What keeps a friendship going through hard times? Grieving with Maureen and staying the course with her, I found the answers.

In the beginning, I felt desperate to alleviate my friend’s pain. I wanted to tear off a chunk of it and feel it for myself so she would not have to bear all the unrelenting sorrow. There was nothing I wouldn’t do. I organized the lunch buffet after the funeral, bought a picture frame for Scott’s photo, scoured the grief sections in the bookstore for any shred of information that would take away the crushing burden. I took flowers, dropped off cards, cleaned her house, babysat her other children. I did all this for mainly selfish reasons – I couldn’t stand to do nothing. I finally realized that my efforts were misguided when my six-year-old son said to me, “All you think about is Maureen and her baby.” His comment forced me to see that there’s a fine line between deep concern and doing too much. A hug, a gift, soft words, kind thoughts…none of these things bring babies back to life.

It’s not as if I couldn’t help my friend. My challenge was to follow her lead, to let her show me what she need. I remember being afraid to mention Scott’s name for fear of upsetting her – until she told me that it’s more upsetting not to mention her son. It struck me that, unless I was being offensive, I couldn’t upset her any more than she was already upset. By talking about her third son, I was honouring him and his place in Maureen’s heart. But it’s not easy. My mouth stumbled over Scott’s name. “Scott, Scott, Scott,” I practiced in the car on my way over to Maureen’s. Why was I so reluctant to say his name? I revered to pronouns, when I should have been saying Scott. In the same vein, for the first 12 months, I remembered Scott by dropping a card in Maureen’s mailbox on the fifth of every month. I wanted her to know I had not forgotten. Someone asked me why I did that. “You are reminding her what happened and not letting her move on,” the woman said. I responded by asking if she thought Maureen would ever forget. The death of her beloved baby is something that weighs on her mind and her heart all the time. My response might not have been perfect, but it was better than being paralyzed by discomfort. People are so afraid of doing the wrong thing that they err by doing nothing. It takes very little effort to say, “I’m thinking of you and your dear baby.”

And I ask to see photos of Scott. He is beautiful and peaceful and his lips are ruby red. I can almost forget that he’s dead until I look at Maureen’s face. The grief in her eyes, the sadness that burrows right down to her soul, kicks me back to reality. It’s painful for both of us, but healing too, to acknowledge that Scott was here.

Like all friends, I’m not perfect. I say stupid awkward things. I’ve been guilty of blathering on and on about clothes and movies and other friends when I’m with Maureen, as I seem to want to fill the air with my incessant chatter. I do this just to avoid a few seconds of silence and feelings of sadness. It took me a while to understand that Maureen’s grief was hers – not mine – and it was presumptuous for me to think otherwise.

While I tried to learn how to be a good friend to Maureen, I thought of how others had been true friends to me. For months after my divorce, it took all my energy to get myself out of bed and look after my children. I had none left to nurture friendships. My friends understood and waited, supporting me while I regained strength. As I sent through my own metamorphosis, my remaining friendships evolved into something more substantial and real. These women felt secure enough in our friendship and their own marriages to adjust to my newfound status as a single mother. They were patient with me and I have learned to be patient with Maureen. I let her be. Maureen helped me to accept sadness. I now know how to be with a crying friend. I just listen and hand her some tissues to wipe her eyes.

I also learned not to shy away from difficult conversations. I once asked Maureen how to talk about Scott. For example, I was not sure if I should refer to Scott’s birth or his death, for they are one in the same. Scott was born on December 5. She birthed him. I’m glad I asked because I didn’t want to refer to her son only in terms of his death or funeral. He was indeed alive inside of her; I witnessed his growth over the months.

I know my limits. I will never totally understand what Maureen is going through. The only person who speaks the same language as a grieving mother is another mother whose child has died. I have learned that there is no shame in saying, “I don’t know” or “I don’t understand.”

Two years have passed. Our lives continue. Maureen has since given birth to her fourth child, a healthy boy named Joshua Scott. I’ve made new friends and acquaintances. Scott’s birth and death taught me that I can’t expect Maureen to be the same person I knew before. Although we still go for coffee and see movies together, our relationship has changed inexorably. We are finding a new path, and in some ways, a new friendship.

I know what I have given to Maureen will return to me tenfold. If a horrible tragedy were to strike me tomorrow, Maureen would walk beside me in my pain. I know that much is true.

you’ve got a friend in me

IMG_6099I have been asked to speak about the value of peer support at an upcoming conference.  But this time I’m not sharing research or best practice or information about community peer support programs.  I’ve been asked to simply talk about what peer support means to me, as a mom.

I had mom friends when my two eldest kids were little.  I was a young mom, with no family in town and I didn’t know anybody else with a baby.  I met these friends by stalking them at La Leche League meetings.  There I met crunchy granola moms like me, and our like-minded connections stuck.  These women helped me through the early bleary days of motherhood, a cross-Canada move, and a divorce.  I picked up other mama friends in playgrounds, neighbourhood alleys, school hallways and at my kid’s t-ball games.  I even moved to Norway with my kids to live with one mom friend and her family (long story).

Seven years and one marriage later, enter Aaron, my son with Down syndrome.  At the beginning, it was important for me to be surrounded by moms whose kids also had an extra chromosome.  I began a little moms group, and twelve years later, I am still friends with those awesome moms (the lovely ladies are pictured above).  As Aaron started in his neighbourhood school and I became invisible on the playground as the mom of a kid who was different, I gravitated towards moms who had kids with a ‘special needs’ designation at the school.  Diagnosis didn’t matter then – our commonality was our struggle with systems and society who couldn’t see our kids as kids first. (Don’t worry.  I have friends who don’t have a kid with a disability.  And friends who don’t have kids at all.  And friends that aren’t women, too. I don’t discriminate.  But this is about my mama friends). It took me 12 years, but I had a pretty healthy circle of mom friends in Edmonton.  They were my peeps, my lifeline, my confidantes.

Six months ago, my husband, son and I packed up our stuff and moved to Vancouver.  I am starting from scratch here to build my tribe, for adult friendships are constructed very slowly.

Since we’ve moved, I promised myself I’d say ‘yes’ to any social invitation that came my way.  As as a result, I’ve surprised myself by going to musicals and church events and having a great time.  The one mom I already knew in this Down syndrome world has been exceedingly kind.  Helping us unpack.  Bringing over food when my husband was sick.  Inviting us for dinner.  Introducing me around.  Showing me the ropes.  Another mom, who has an older son with autism, spent an afternoon with me in the coffee shop, going over her carefully researched list of services that she had typed up for me.  I was a mom she didn’t even know.  She also connected us up with the lovely young lady who did childcare for us this summer.  Lucky lucky me.

One morning in June, another mom approached me on the street – ‘I’ve heard of you!’ she said.  She has a young daughter with Down syndrome.  She invited our family over for a barbecue the very next day and we met some of her peeps too.  She kindly and unexpectedly looked after my boy as I drove my husband to the hospital emergency (another long story).  We went bowling with a family whose son plays baseball with Aaron.  I drive around the Lower Mainland to Abbotsford, New West and Squamish to meet with other moms.  I am happily getting to know my sister-in-law – a new mom herself – better too.

Twitter helps.  I find moms who are both writers and who have kids with differences just like me. Soon I am going for beer and burgers at a pub with a new gaggle of moms. Slowly, slowly, it builds.

The bond between mothers with children with differences is very strong.  We know without saying.  We don’t clean up our houses for each other.  We help each other as others have helped us.  We never apologize for our kids.  We appreciate the notion of a very short playdate that includes french fries and quick exits.  We commiserate over the (hilariously-named) Disabilitini.

Mothering any child is hard. We all need support, disability or not, and I wish our world was kinder to moms in general. I feel thankful for my trail of mom friends across Canada and now in Vancouver.  Is peer support valuable?  Hell yes.  But what is peer support, but caring for another human being?  These women don’t provide peer support to me. We are simply each others friends.