He doesn’t just have his mother’s heart-shaped face

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This essay was originally published in the Globe + Mail on October 6, 2005.

I gave birth to my baby boy, and he was beautiful. He was the product of a second marriage for both of us, evidence that broken people can heal. He symbolized hope and joy. He was our love child.

His birth was everything I wanted. No interventions, no medications, a baby who slipped out naturally after a few pushes to meet his parents. Even in the late stages of labour, Mike and I were giddy with excitement in between each contraction. “The baby is coming,” Mike kept saying, and I would grin and nod and kiss my love before another wave of contractions pulled me back under.

We took him home after 10 hours, and he was all wee and jaundice-yellow. He was a quiet, soft, sleepy baby with a sweet mop of hair on top of his head. His round face was mine, and his eyebrows were blond. He was our little peanut, our button. His dad and I fell deeply in love with him.

Then the dark clouds started to settle in. At the end of his two-week checkup at the clinic, the doctor hesitated. I could tell he wanted to say something.

“Do you remember we talked about prenatal testing?”

Yes, I had. I had declined the testing. I knew I’d carry my baby to term no matter what.

I looked him straight in the eye, and took a deep breath. “Are you trying to tell me that our baby has Down syndrome?”

Retrospect is such an easy thing. I had not forgotten the day after Aaron’s birth, when I had gotten up after a long night of scrutinizing my boy and typed “Down syndrome” in the Google search engine. I had broached the subject with Mike, and he had scoffed at me for being paranoid. Then I had asked the public health nurse later that day if she thought Aaron had Down syndrome.

“Yes,” she had said gently, but then she had inspected the palms of his hands and his toes and concluded that he had a heart-shaped face like his mom, and eyes like his dad — that’s all. No other signs. So we filed away this scare in the back room of our heads and carried on. Whew. That was a relief.

But when the doctor mentioned the prenatal testing, I knew. I could hear my heart beating in my ears. I was holding onto my baby for dear life. “Oh,” I said. “Can I use my cell phone here?” I had to phone Mike, immediately.

I don’t recall our conversation. I am sure I sounded as if I was being strangled — and, in a way, I was. I do know that I sat in that examining room, nursing Aaron until Mike arrived. I don’t cry easily and there was a choked bundled of tears sitting just beyond my throat. I remembered to breathe.

Mike wanted to carry Aaron over to the lab in the hospital. He wouldn’t put him in his stroller, and he marched proudly through the hospital corridors cradling his son. It was as if he was saying, “I’m looking after my boy, no matter what!” They drew blood from Aaron’s little arm. Mike and I didn’t talk much — I felt sick as the needle went in and Aaron gave a cry of protest. We had to wait two long weeks for the result.

We were back at home. Aaron was napping in his car seat. The day was beautiful . . . mid-April, sun streaming out of the prairie sky. We sat on the balcony of our house, watching Aaron sleep, discussed how our doctor was wrong, how he was too inexperienced, how he had surely misdiagnosed.

There was a waft of music coming from the house across the alley. I strained to make out what song it was — it was coming from an open bedroom window. A young man lived there with his parents. He had a rare chromosome deficiency and is one of the few people with such a condition to be alive. He wasn’t expected to live beyond a year old, but there he was, 20 years old, blasting music out of his window.

The song finally became clear. It was a song from my memory of junior high school dances. Our neighbour was playing ABBA’s Take a Chance on Me.

The results came back after the two weeks. And yes, our baby has Down syndrome. The deep chasm of grief seemed endless when we found out that the baby we expected was not the baby we received.

But slowly the sun peeked out from behind those clouds, and I was able to get out of bed and go about my business. My baby, now two years old, did not allow me to stay stuck in the grief.

Instead he holds out his chubby little hand as we trundle down the sidewalk, both delighting in this warm fall day. My ABBA-playing neighbour is outside as we pass his house, and his face lights up as I greet him by name. Take a chance on us, indeed.

won’t you be my neighbor?

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I handed my ticket to the usher at the movie theatre. He glanced at it, looked at me and said, “Won’t you be my neighbour?” I smiled at him and said, “Why yes I will!” We exchanged grins in the moment before I disappeared into the dark theatre. It was a brief spark of connection at the end of a long day.

My eldest two kids will tell you that they didn’t have a television in the 1990’s when they were little. They had a gap in their media references when they went to school, until I introduced DVDs into their lives so they could catch up. They mostly watched Sesame Street and Blues Clues, but Mr. Rogers was on their radar. I didn’t really understand the soft-spoken man in the cardigan. After watching Won’t You Be My Neighbor? I have had a 90 minute glimpse into his wisdom.

This is not a movie review; this is only my own thoughts about the relevance of Mr. Rogers’ philosophy in today’s messed up, beautiful world. While the news and Twitter remind me how messed up we are, I look outside and see the trees, blue sky and mountains.  The Mr. Rogers movie reminded me that the world is beautiful too.

I wept at the sweet innocence of Won’t You Be My Neighbor. There was a lot of sniffling in the theatre, so I know I wasn’t the only one.  The main message was: you are loved exactly as you are. This is what Mr. Rogers repeated over and over to children throughout the decades. If you are loved exactly as you are, this means love is not withdrawn when you stumble or aren’t perfect. This is a powerful message to impart to children. I think of how much pain in this world could have been avoided if we all felt loved and attached.

Mr. Rogers was not himself perfect or without his critics. There are those who think that telling each and every child that they are special has created generations of entitled adults. I call baloney on that. Every child is special and so every adult is too. You shouldn’t have to ‘work hard’ to prove your worth. You are worthy simply because you are human. Part of Mr. Rogers’ background taught him that everybody is loved by God, no matter what.  The no matter what part is really important.

Brene Brown has written extensively about feeling worthy. Dr. Robert Maunder is in the midst of releasing a compelling set of stories called The Damage I Am about a man struggling with his own worth because of childhood trauma. The podcast Other People’s Problems often has episodes echoing the same theme.

As Mr. Rogers says: “Love or the lack of love is the root of everything.”

Towards the end of the film, there is a scene where Mr. Rogers meets a young man named Jeffrey Erlanger, who is quadriplegic and uses a wheelchair. Having my own son with a disability, I sat up and paid careful attention. Just watch Mr. Rogers’ conversation with Jeffrey.

Notice how Fred Rogers carefully listens to Jeffrey. He acknowledges Jeffrey above his wheelchair and praises him for his extensive knowledge of his medical conditions. Fred brings up the notion of being blue and confesses to feeling blue when he was a boy.  We learn earlier in the film that Mr. Rogers was often sick as a child.  Perhaps this is the foundation of his empathy.  Jeffrey and Mr. Rogers sing the song “It’s You I Like” together.

I wonder if I’ve imparted unconditional love to my own son with a disability.  If we’ve had the right balance of therapy and acceptance to ensure he doesn’t believe himself broken and for him to believe that he is loved exactly as he is.

I work on telling and showing all my children that they are loved – no matter what – every single day. Some days are better than others. On the bad days, my own personal pain that I’ve been carrying around for a very long time gets in the way. So the next day I get up and try again.

I believe that imparting both the knowledge and feeling to children that they are loved is the most important work of a parent.  People and governments who block children from this love are the purest kind of evil.  This need to believe in our hearts that we are worthy continues into adulthood too.

The movie ends powerfully with Mr. Rogers asking for ten seconds of silence to think of those who have encouraged us to become who we are today.  I invite you to close your eyes and think of your special person too.  (For me, this is my grandma).

Today, take a break from CNN and Twitter and get outside instead.  Out there, look for the good in the world, the helpers.  We all can be helpers, starting with the children.  Thank you Mr. Rogers for this gentle + timeless reminder. xo.

remembering henry

poppiesLong ago, when I was twenty and still in university, I worked in a Veteran’s Home as a Nursing Attendant. I’d often work mornings helping the staff get the men up and ready for the day – and then run across campus to my English class, dressed in my nursing uniform and white nylons.

I’m remembering that experience today. Nursing Attendants are true bedside workers. We were the ones who worked directly with the gentlemen on the nursing unit – many of whom required extensive care. We cleaned up things that the housekeeping staff wouldn’t touch. But we also had the luxury of time to spend with the veterans, as we helped them get dressed, or patiently helped feed them meals.

Nobody talked about the War. At the time, there was even a World War I veteran at the Vet’s Home – but there were many veterans from World War II and Korea. While the war was in the distant past, it lived with these men every day.  These were just ordinary men who had found themselves in terrible circumstances. The scars from those war-time experiences often were manifested in estranged families, whispers of abusive behaviour and alcoholism. I remember helping men to bed after their return from the Legion, reeking of whiskey, and slurring their words.

But that wasn’t the whole story. The wars had affected a cross-section of the population of men, and there were many dignified, lovely residents at the Veteran’s Home. They enjoyed the company of the young nurses who where there to support them, and many of them reminded me of my own grandpa. It was important for the staff to remember that these ‘residents’ were also fathers, granddads, brothers and sons.

There were many stories of kindness at the Vet’s Home. My clearest memory was one winter, when I was working nights. On night shift, there was a lot of sitting around at the nursing desk, waiting to respond to call bells. Every few hours we would have rounds, where we would quietly walk through the unit, checking on the men, emptying urinals, and turning those who were immobile so they wouldn’t get bedsores.

One night, my patient assignment included an elderly man named Henry. He was in the last stages of life, and his breathing was increasingly noisy and laboured.  He had no family or friends to visit him in his final hours. After our first set of rounds, I excused myself from the desk to sit beside his bed.  Henry had yelled and sworn at me in the past, but all that didn’t matter now. His hand had paper-thin skin, and I held it softly through the wee hours of the night. It was a long shift. When I left at 7 am, I said a quiet good-bye and gave him a gentle kiss on his forehead.  I did not look back when I left the room.

I read Henry’s obituary in the paper a few days later.

I learned many things from working at that Vet’s Home. One was to duck fast if something was being thrown at you.   My other realization was that health care is really about acts of kindness.   And that no man should ever die alone.

Lest we forget.

(I wrote this in 2013, and republish it every November 11).

behind the boy in the moon

I wept during Ian Brown’s plenary talk on Tuesday at the CAPHC conference. Big wet tears leaked through my mascara. I stopped myself just short of audible sobbing.

Towards the end of Ian’s closing words, I peeked at the audience around me. To my surprise, they were crying too: researchers, academics, administrators, physicians – those of impressive titles, but all people too. I pulled my tissues out of my mom purse and passed them around my table.

I knew why I was weeping, but I wasn’t clear on the reason for their tears. I am the parent of a young man who has an intellectual disability. I, too, have a little dream of a community of love for Aaron, like Ian’s dream for his son Walker.  But clearly my professional colleagues had their hearts touched and their tears triggered for different reasons – perhaps they were thinking about one of their past patients, or an aunt or an uncle, or even about their own vulnerability. I’ll never know.

Ian’s talk, although centred on people with intellectual disabilities (finally, they had airtime on a stage) was also a talk about what makes us human. And that’s not success or competition (as many of my accomplished friends are engaged in), but instead he expressed what makes us human is simply love and belonging. People with intellectual disabilities understand that deeply. As Ian said, the disabled do the work of love.

I can’t adequately summarize his talk. It was a profound homage to people with intellectual disabilities – the likes of which I have never bore witness to before.

I heard Ian speak in 2009, also in Halifax, also at CAPHC, and knew him to be brutally honest and real – unafraid and apologetic – refreshingly with no reverence for the graduate degrees and fancy titles that filled the room. I knew Tuesday’s talk would be important, and delayed my flight home until the next morning to see him. I knew it would be an important talk and it was.

The whole pediatric health conference had been focused on fixing: deciding who was worthy of fixing and funding; research focused on helping families to fix their children; and a session mocking patients who were trying to fix themselves by turning to alternative medicine.

All this fixing talk made me unsettled by Tuesday afternoon, after crashing from my high from Sunday’s CFAN Symposium. In stark contrast, Ian told the health care audience to stop trying to fix his son, to “pay attention to the person he actually is”. He continued, “Let us put medical care behind human interaction. Let us build communities that are much less bureaucratic, much more inclusive…and that embrace and celebrate the beautiful grace of people like Walker.”

Ian Brown was a messenger for love and belonging – the two things that really matter in health care – the only way we are going to see our way through the big costly bloody mess that is our health care system. He was an eloquent poet, each phrase carefully chosen, spoken straight from his Dad heart, passionate and poignant. I furiously scratched snippets in my notebook. About his son: what value does Walker’s broken life have?

About building a community: for once the disabled would have a home with a great view…where all you have to do is keep company with one another.

In the end, Ian challenged us to join the intellectually disabled and be touched by the grace of who people actually are, not by who we think they should be.

Later that night, I FaceTimed Aaron: ‘Hi Mom!’ he said brightly, his round face and almond eyes lighting up the screen, ‘How was your day?’ I was struck by the gift that is my son, by the very fact that he was born, that he is with us, that he is human. There are so few people who understand him in this world. He shows us the path to love every single day, over and over again. If only we can adopt enough humility to push our own egos aside to clearly hear what he’s trying to say.

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a mama bear’s prayer

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This is from Elizabeth Lesser’s brilliant book called Broken Open. She was referring to the anger that activists carry around with them.  That whole if you aren’t outraged, you aren’t paying attention thing?  Well, what happens if you are outraged all the time?   It is hard to turn it off, but we must try to in order to save ourselves.

So my heartfelt Sunday wish for you is that you find that quiet joy today.  I’m sitting on my couch with a coffee and a stack of newspapers by my side.  Miles Davis is playing on the record player.   That’s at least a good start.

smile because it happened

Last Friday, my husband and I tacked on two extra hours to our babysitter request to sneak out for after work drinks.  The week had been oddly brutal for random reasons:  Wednesday seemed to be proclaimed be hostile to Sue day, Thursday was littered with unpleasant emails and Friday zoomed in at the tail of never ending to do lists.

I was sitting across from my husband at Portland Craft, pretending I live on Main Street and happily sipping an amaretto sour.  An hour in, Mike started to become  jittery, disappearing to the washroom and ‘checking the score on the hockey game’ on his phone at the table. I was blathering on about something when I saw his gaze shift slightly and his face brighten up.

My daughter Ella suddenly materialized beside me, fresh off a plane from Edmonton.  I had been totally punked, never suspecting my man and girl had been scheming a trip to Vancouver for Mother’s Day weekend for many weeks.   My hands flew to my mouth in shock and I grabbed her, hugged her, and burst into grateful tears.  I last saw her over two months ago, and my heart ached heavy for her.  She is a beautiful young woman, inside and out, a light of my life.

Mike and Ella had a good giggle about my shocked reaction.  I had suspected nothing, and I think this is the first time I had ever been truly surprised.  It is difficult to surprise someone who keeps a tight reign on the family schedule.  I like to know every little thing that’s going on so I can dutifully record all activities in my date book.

I had told Mike that all I wanted for Mother’s Day was to see my far-flung kids, knowing full well my eldest was in the US and not travelling and wistfully hoping for some miracle that Ella (busy, in between semesters of nursing school and working) would visit.

The emptying nest has been a sad phenomenon for me as a mother.  I put my deep longing to see my older children in a little box in my heart that I take out only on occasion:  when I’m driving and a Mumford & Sons song comes on; when I set the table for three instead of five; when I’m trying to fall asleep at night.   These are rather pathetic occurrences and my only solace is that my kids are independent, strong of character and living the lives they want.  And, they generally respond to my texts on a timely basis.  What more can a mother ask for?  My loose parenting philosophy is this:  make sure they are securely attached in their younger years and then let them go.  This is hard heart-breaking work.

Ah, but the reward of seeing them, even rarely, is very rich.  We do not take each other for granted.  All weekend, I delighted in Ella’s presence.  We roamed up and down the streets of Vancouver, eating sushi & burritos & doughnuts (not all at the same time) and shopping for shoes.  We went for pedicures.  Ella played soccer with Aaron’s soccer team.  Both kids made me a lovely breakfast in bed on Mother’s Day – eggs benedict on a sesame bagel with avocado and sausage.  They concocted artful handmade Mother’s Day cards – Aaron under the guidance of his sister, carefully crafting the letters M in Mom like hearts.  We sprawled on the couch together and watched Amazing Race.  We basked in the sunset on Spanish Banks.

Soon it was Sunday night and time to take Ella to the airport.  This was the over part and yes, I cried at the departure drop off area.  Ella said, ‘don’t cry or I’ll cry’ so I stopped and held my sobs until I hit Marine Drive back home.

But then I remembered this good Dr. Seuss quote.  Am I blessed?  Yes.  Have I done my job as a mom?  Yes.  I saw Ella for a sweet 48 hours and enjoyed every single second of it.  Happy Mother’s Day to me and to you too.  I hope that you felt loved and expressed love this weekend, because in the end, that’s all that really matters.

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