love is the answer

grandma

Twenty four years after my post-grad studies in health care admin, 13 years after my experience at the department of health, 12 years after the birth of my youngest son with an extra chromosome, ten years after my work as a volunteer on a family council, seven years after the start of my family engagement career, I have finally found the answer that I have been looking for.

What is the key to patient and family centred care, patient engagement, patient experience, patient satisfaction and communication? Love. Love is the answer, my friends.

Three years ago, I read a profound essay called Love, a word that medicine fears, written by a family physician named Kirsten Meisinger. Dr. Meisinger finally uttered the word that I’d been skirting around all these years. I had been speaking about listening, perspective taking, empathy, caring, compassion, and humanity in health care. These are all euphemisms for one word: love.

Love means a deep caring for patients, their families, each other and ourselves. If we can open our hearts to those who are fragile, vulnerable and in pain, we will change the landscape of the health care world. This means dismantling the brick walls around our hearts that are built by egos, perfectionism, professionalism and fear. This means demonstrating what is in your heart by a gentle touch, a kind word, or a thoughtful gesture.

Fellow health care rebels, love is the great revolution in health care, for love is at the very core of health care. Here’s what you can do: create space, time, systems and environments where caring is celebrated, encouraged and rewarded. Model the compassionate culture you want to see by being compassionate to people lost in the hallways, the housekeeping staff, your colleagues and yourself. Make the time to actively listen to people’s stories. Offer to staff the time to be still, reflect and acknowledge their own pain so they can be open to another’s pain. Teach our students well to lend their gentle hearts to those in need, and how to softly save love for themselves so they can go home to their families at night. Count empathies, not efficiencies. Shed artificial roles to make person-to-person connections, not provider to patient ones.

All this love will build and build, until it finally reaches the tipping point. Only then will we get to the true purpose of health care, and that is to care for other human beings. The answer to all of your struggles lives in your own hearts. If you slow down, close your eyes and be quiet, you will hear it whispering to you.

The older I get, the less I know. The only thing I’ve really figured out about life after all these years is this one true thing: love is what heals people. It is the gentle hearts that will create change in this beautiful, messed up world.

(originally published in the Health Care Rebels Central blog).

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.

living in defiance of the so-called ordinary

ferry

Two young ladies rang our doorbell at dinner time on Sunday night. We were expecting them – they were UBC Medical Anthropology students, interviewing us for a paper they were writing about the experience of living with a person with a disability.  My husband and I live with a person with a disability.  That would be Aaron, age 12 & pictured here, our youngest son who happens to have been born with Down syndrome.

I fear these students got way more content than they were looking for.  I’m sure they are still transcribing our 90 minute conversation, which was a mix of ranting, arm waving, preaching, storytelling, tears and love.  I hope they didn’t walk out thinking:  gosh, having a child with a disability really makes you fall off your rocker.  We are still on our rockers in this house, and in fact, we are standing on them, proud and tall – saner than we’ve ever been.

Before I had Aaron, I had NO IDEA.  I had NO IDEA about the pain of witnessing a child being excluded and struggling to find belonging.  I had NO IDEA what it felt like to be stared at, ignored or ridiculed because you look different than everybody else.  I had NO IDEA how most of society has not evolved, is stuck in caveman days, tribal and terrified of ‘the other’.  I had NO IDEA I should have purposely taught my older two kids about kindness and compassion, about standing up for the underdog, and about the importance of conducting oneself with absolute integrity.  (Thankfully, their little brother came along when they were 7 and 10 – and he taught them those values himself).

I was woefully ignorant before Aaron.  As an entitled, educated, well-off white person, I had NO IDEA what it felt like to be discriminated against.  But now I know, at least vicariously, because I love someone who experiences exclusion and loneliness every single day of his life simply because he was born different.

When Mike and I answered those young ladies’ questions, we shared stories about our struggles with systems, being denied respite & childcare, fighting against IQ testing, standing up for our son, digging deep to build him a community of friends, and how it feels to walk home with him from school and to have not one kid from his class slow down and say hi to him.

BUT.

This pain is deep, but it does not come from Aaron himself.  Aaron is but a human being.  He is flawed, yes, like the rest of us, but he also contains an infinite amount of joy and understanding about what’s important in life. (Hint:  it is the little things, folks).  I did not understand how precious life was before Aaron came along.  He taught us that we must celebrate every single moment, for this is all that we have.

We told those students about this intangible stuff too. You can’t see it, but it is real, and it is based in love. We told them that most people love their babies NO MATTER WHAT and what if they had a child and they had a phone call when he was 6 years old and found out that he was hit by a car and had a brain injury, would they STOP LOVING HIM?  Of course not.  In my ranting, I was reminded of this wonderful quote from Ian Brown:

Disability is inherently radical, lived in defiance of the so-called ordinary. – Ian Brown, Facing Difference, The Walrus, May 2014.

Aaron’s very life is radical, but by openly loving him, by bringing him into this world and daring to be happy, we are leading the revolution.  How much longer can people with disabilities be denied childcare, government funding for therapies, education, love, meaningful employment, and decent living conditions?  How is this OK with any other group of people?  (Answer:  this is not OK, at least not here in Canada – except for individuals with disabilities).

I hope that’s what those young students heard when they transcribed our many words from our interview for their paper.  I hope they realized that the important stuff (and people) in life are worth fighting for.  

Every day, Aaron shows us that life is not black & white.  Life, in fact, presents in glorious colour, and with that comes deep pain, but also profound love.  We are supposed to feel all of this, all of the joy and all of the pain, to prove that we are alive.  Aaron is who he is, and that’s simply enough.

a mother’s chronic sorrow

The truth I dare not say was chronicled in a recent blog post by Susan Ellison Busch. She speaks eloquently about having a child with a disability and the loss that comes with grappling with the child that you expected was not the child that you got.  This is not the type of topic that I bring up at cocktail parties, and I tip my hat to her for the authenticity of her writing.

I have a kid with a disability and I have other children too. Being the mother of any child involves this secret chronic sorrow. The losses of motherhood pile up early: the baby who won’t settle in your arms; the toddler who runs away from you; the inevitable loss of status in a child’s life – slowly you are replaced by teachers, coaches, friends, adolescence, girlfriends & boyfriends and college. And then one day your children are simply gone.

My beloved daughter lives a thousand miles away, and I’m thankful for this relatively close distance. We manage to steal visits every few weeks. My eldest son is even farther afield. I haven’t seen him in 10 months. I climbed into my car at 5 in the morning yesterday to embark on a trip to see my boy.

The streets of Vancouver were deserted so early on a Sunday; the traffic was scarce and the lights were all green. I played that damn Mumford & Sons cd, which always reminds me of my wayward son. I don’t know why – he would detest such mainstream music – maybe it is the tinkling piano or the quietly strumming guitar. I think it is the sad lyrics:

And in time
As one reminds the other of the past
A life lived much too fast to hold onto
How am I losing you?

There was a crack in my shell and I blinked back tears in the darkness of my little car. My absent children have never faded from my mind, but I put missing them in a tightly locked box in my heart. I’m normally terrible at compartmentalizing, but compartmentalize them I have done, to save myself from collapsing in to a regular heap of tears.

I often cite the serenity prayer to staff at my work at a children’s hospital. Think of what you can control, I say, and what you cannot. You can’t control the system, or your manager or your colleagues, so let go of that, I say. All you can control, I say, is you – what you say, how you treat others, the thoughts in your head. My flown children soar on the outer edges of my serenity prayer. They belong to the world now.

For 41 hours, I’ll pop in as a visitor to my son’s life. This trip is to see his face, to hug him, to tell him that I love him, no matter how many miles separate us. A mother’s life is full of losses – loss of that dream of that perfect child (here’s a spoiler – the perfect child doesn’t exist anyhow, even for typical children), loss of identity as a mother, the loss of children grown. To live with that sorrow and to avoid a middle-aged life of overbearing bitterness, we must store that sadness in that little box, take it out and examine it only occasionally, to save our fragile hearts.

When I finally saw him after ten hours of travel, I hugged him hard and let out a strangled sob, embarrassing us both.  “I love you,” I said.  “I love you too Mom,” he said.  And that had to be enough.

keep on spreading that love

spreadingloveAn essay I wrote for the Canadian Medical Association Journal called About Dr. Darwish now has public access.  Hurrah!  (I was cursing the obligatory paywall it was hiding behind for a year after publication in May 2014).  But here it is.  It is free for the reading.

I share this story widely in my work with health professionals.  It was written in honour of Dr. Azza Darwish, who was Aaron’s pediatrician after he was born.

This story says to every single person who works in health care: you have the power to put patients and families on a path of strength and hope.  

Azza Darwish did just that the years we were blessed to have her on this earth. Her memory lives on every time there is a kind and compassionate interaction in the health care system. Let’s all keep spreading her love.

a hospital stay in pictures

who decided we needed first-hand experience at BC Children's Hospital?  Whomever/whatever gave Aaron pneumonia.

Who decided we needed first-hand experience at BC Children’s Hospital? Whomever/whatever gave Aaron pneumonia.

three nights at the hospital.  here is aaron's awesome student nurse, gillian.  he inhaled A LOT of ventolin.

Three nights at the hospital. Here is Aaron’s awesome student nurse, Gillian. She was the best.  He inhaled A LOT of ventolin.

aaron refused to eat.  he told me, 'hospital food is disgusting'.  this picture proves his point.

Aaron refused to eat. he told me, ‘hospital food is disgusting’. This picture proves his point.

his oxygen ranged wildly from 81 to 98.  when he was closer to 98, they started talking about going home.

His oxygen ranged wildly from 81 to 98. When he was closer to 98, they started talking about going home.

feeling better!  discharged friday - lethargic weekend, but dfei

I was SO relieved to have Aaron talking and laughing again.  As Anne Lamott says, there are two prayers:  help me help me help me & thank you thank you thank you. I am feeling very grateful for the care & caring he received. Thank you.