In late December 2009, our daughter’s heart failed. Completely. She was 26.
In the hours, then the days, weeks and ultimately months that followed, I grew to understand, as never before, the importance of prayer — its centrality not just to our spiritual lives, but to life itself. Christian prayers, Muslim prayers, Jewish prayers: anything, anyone, anywhere. Prayers held us. This isn’t metaphor; the holding was tangible, physical. They provided ground beneath us.
Kristin had been ill for several weeks, but it was the height of flu season. H1N1. Repeated trips to emergency resulted in repeated dismissals. Just the flu. An emergency nurse said there must be something wrong with the equipment — it kept showing impossibly low cardiac functions.
But it wasn’t flu. It was a heart so weakened that no one knows how she kept going. At first it was all a bewildering rush. No blood pressure. No pulse. An ejection fraction of six (50-plus is normal; under 25, heart failure). “We’ll try to save her limbs if we can.” Her extremities had not had blood for several hours. An image of my daughter without arms and legs formed in front of me, but fortunately just as quickly dissipated.
At this point, the doctors didn’t know my daughter — one of the most stubborn vertebrates God ever created. And they didn’t know, nor did we, that God’s hand would be so clearly in this. That this was the beginning of a journey, not the end, through a landscape of hope, not desolation.
Two heart surgeries in the first 24 hours, the second installing a ventricular assist device (VAD), a mechanical heart pump that would keep her alive while waiting for a heart transplant. Impossibilities everywhere: her blood vessels had all collapsed, they couldn’t get a line in and so couldn’t get readings, couldn’t administer the strong drugs they needed. She should have been unconscious but was inexplicably awake, lucid and talking to her brilliant, kind and equally stubborn surgeon. He was not going to lose her, he said in the operating room, line in or no line in, readings or none. Instead he trusted her voice to lead him, conscious when she ought not to have been. Together they enacted a miracle.
Meanwhile, the church had gathered to pray. Knox United is an old church in the heart of Winnipeg, now a neighbourhood of refugees and immigrants mostly. At that prayer gathering, I later learned, they started in that respectful but slightly insipid way typical of United Church folk, as if we were disturbing a grumpy father reading his newspaper. Then Afaf, a wonderfully strong Sudanese woman, got up, stamped her foot a bit and said in a large voice, “God, now you got to step up to the plate for Pastor’s daughter.”
But I knew nothing of that at the time. All I knew was what was in front of me. All I could do was mentally utter, “I trust you.” Not much of a prayer, perhaps, but it was real. It wasn’t piety or faith. It was simply my only option.
All I knew was what was in front of me. All I could do was mentally utter, 'I trust you.'
The news from the surgery was good. Mostly. The pump was working, she
was alive, but there’d been a large clot — there was a chance of
stroke. They would keep her unconscious for several days.
the slow awakening. The brain scan showed seven strokes. The Most
Annoying Neurologist (MAN) poking her: “Definite paralysis, blindness on
one side.” But the MAN didn’t know our daughter, nor, apparently, our
God. I remember going to the chapel to pray, intending to scream, to
curse at God, but all that came out was, “Is this the best you can do?”
The rage wouldn’t rise. Instead I heard Job: “Though he slay me, yet
will I trust him.” This was unsettling — I’d always been good at raging,
doubting. But in that moment, that place so infused by prayers, lack of
faith was not an option.
The holidays had ended and the main
cardiac team had returned. She was young, they reassured us; young
brains could heal. We had to wait, to pray, to send positive thoughts.
And bit by bit, our daughter and our God defied the MAN.
passed in hours, hours lasted for weeks. People rallied around us.
Someone put a cooler on our front porch — friends could put meals in
there. We’d arrive at home, open the cooler and find a feast. Elijah fed
by ravens. We were being held, fed by the hands of God, of friends, of
family. Prayer became a thick membrane surrounding us, an amniotic
fluid, almost tactile.
Sometime after the initial crisis, I
started craving dysfunction: “God, I need something. Maybe booze — what
about starting drinking again, God?” Before the thought was half-formed,
I knew that would be a disaster, knew where that road led. Then I
thought, “Smoking! That’s what I should do, God. I loved those American
Marlboros.” But that wouldn’t work. Kristin would smell it, and she
detested smoking. Nix cigarettes. Then a flash of clarity — a pipe!
“C.S. Lewis smoked a pipe, God, and you liked him, right? That’s it — my
little Irish pipe must be somewhere.” Then I remembered: I’d found just
the stem a few years ago and pitched it. “Please, God, I need
something. I’d like a pipe, but you’ll have to get me one somehow. No
way I’m going to pay for one (who knows how much those things cost
This was the middle of the night in the chapel, and I
was only half-serious. I’d been spending nights at the hospital, heading
home at dawn to sleep. Mary, my wife, would come up for morning rounds.
It was one of those astonishingly cold January dawns in Winnipeg, the
sky clear and still. As I stepped onto our porch, I saw it on the table
beside the front door: a pipe. A used one. I reached out, scared to
touch it. The moment I did I could feel God laughing and a great warm
voice saying, “You dumb ass, if I can do this, you think I’m not gonna
take care of your kid?” I picked up the pipe and told no one about it
I wasn’t actually going to smoke someone else’s pipe
(yech). The point, I knew, wasn’t the pipe, but the warm enveloping
joke that held me, and the promise it contained.
Days were spent
in the waiting room with friends and family, the atmosphere warm and
thick with a strange sense of well-being. Gratitude was inescapable —
what else could one feel? We were so . . . blessed. The medical team all
became part of this astonishing circle of love. Prayer was no more an
option than breathing. It was as if we were beyond fear, beyond rage,
beyond demanding, beyond begging. Prayer was holding on, repeating, “I
trust you. She is yours.”
It was as if we were beyond fear, beyond rage, beyond demanding, beyond begging. Prayer was holding on, repeating, 'I trust you. She is yours.'
Days turned into weeks, to months and
ultimately to years. It would be over two years before Kristin would
receive her new heart. Two years on the VAD. After miracle comes
adaptation — walking it out. She recovered in the hospital for eight
weeks. The strokes had their impact. She needed therapy: physio,
occupational, speech and language. And in all this her stubborn spirit
turned indomitable. Her joy was infectious. She was grateful for each
nurse, for the surgeons, for the ward clerk who called her beautiful and
held up her pants as he took her for walks down the hall.
could have seen herself as a victim or fed on resentment. She’d been an
actor; would she act again? She could have allowed fear to overwhelm
her. After all, she was being kept alive by a couple of batteries —
disconnected she would die. But fear could find no toehold in her mind.
Over the next few months, the reason for this became clear: gratitude
cannot collocate with fear.
Rather than an emotion, fear might be
more like a force, a vortex that saps the vibrancy of all emotions —
joy, confidence, even sadness. Engage or argue with it, and it grows.
But choose gratitude and, for whatever reason, fear dissipates,
We could see it in her. Her gratitude at being able
to walk 50 metres down the hall, for being able to play cribbage with
her uncle, for laughing with her sister, for the amazing VAD machine
that would keep her alive. She could have fixated on how she now had a
wire coming out of her belly, had to carry around seven-pound batteries
in a rather ugly vest (which she would later ditch for a Coach bag).
Instead, she chose gratitude.
She could have been afraid of the
machine. She had no reserve in her heart. If the batteries failed or
became disconnected, she would immediately lose consciousness. She
couldn’t be alone, even for a few minutes. But there was no room for
fear. Did she have to will it away or kick it out of her inner room? I
don’t think it ever got into the room. Gratitude was already there.
saw how contagious positive thinking can be, saw it spread among
Kristin and the other VAD recipients. Elaine had received her VAD a few
months before Kristin and was also awaiting transplant. That spring she
had a “dry run.” Airlifted to Edmonton, adrenaline pumping, to get her
new heart, only to be told, “Sorry, the heart’s no good.” This happens.
All the waiting, praying, hoping — dashed. How might you react?
Kristin’s eyes widened as she listened. Elaine got to the point where
the doctors tell her the donor heart was no good. Then Elaine smiled and
said, “So I told them, well, that’s fine. I don’t want a bad heart; I
want a good one. Call me when you get a good one.”
disappointment around with laughter and grace. No room for resentment or
self-pity. Positive energy transferred from Elaine to Kristin, and she
in turn passed it on to others.
Gratitude was born for me in that
helplessness of the first few days, when everything depended entirely
on miracle. Faced with utter helplessness, one has only two responses:
anxiety or relaxation. Everything is in God’s hands.
new normal emerged. Kristin came to live with us, her bedroom equipped
with all the necessary machinery. Nothing could stop her. At the gym,
strengthening her body for transplant. Speaking on organ donation: in
schools, to community groups, on CBC — anywhere. She often said, and
meant it utterly, that this was the best thing that ever happened to
her. It taught her gratitude. And hope. Pushing the limits of the
possible, she eventually convinced her medical team to let her move out
on her own. Her apartment was about five minutes from our home. In the
meantime, life slowly returned to a new normal for Mary and me too. We
started back to work.
If you’re facing a difficult situation,
there is no better place to be than among refugees, survivors. They know
the power of prayer, the cost of hope. Sally, a community member, had
escaped the rebels in Sierra Leone, taking her daughters and sons. Not
all made it. We were chatting. I said I’d always wondered what would
happen if you had to face your greatest fear. What would it be like on
the other side? Would there just be new fears? Instead I found that it
was simply quiet. Not peaceful exactly, just quiet. Her eyes fixed on
mine. “I know that quiet, Bill. I know it very well.”
rang at 11:30 p.m. on Jan. 6, 2012. It was Kristin, saying that Ottawa
had called with a heart offer for her. I thought she was joking. Not my
most stellar moment as a parent. Mad dashing, gathering, packing. Within
two hours, we were on an air ambulance.
Have I mentioned
Kristin’s love of shoes? A love inherited from my mother, who was in her
80s before she gave up heels. Kristin’s four-inch stilettos were in her
Within six hours, we were at the Ottawa hospital and she
was getting prepared for surgery. The removal team was working in
Toronto at the same time. Final word on the suitability and health of
the donor’s heart would not come until seconds before it would be
transferred to Ottawa. Usually the patient is sedated for this. Kristin
would have none of it. Didn’t want to wake up, she said, to learn she’d
simply had a nice nap. Waiting in pre-op, she joked with the nurses.
Word came that Kristin wanted to see her mom. Then she asked for her
sister and me. She’d been regaling the nurses with tales of shopping and
shoes. So much laughter. Then the news. Heart was good. Final prepping
and off they went, Kristin loudly singing Achy Breaky Heart
, the nurses dancing her stretcher toward the operating room.
passed before the surgeon came out. It had gone well. It was a great
heart, we learned, a perfect fit. As soon as he took the clamp off, the
heart started beating on its own. It seemed very happy in its new home,
Within hours of Kristin’s waking, the nurses helped her
stick her still-puffy feet into those tiny shoes with magnificent heels
and she walked — just far enough, but she’d done it. Resurrection was
coursing through our veins.
I’d assumed that the Ottawa time
would be prayerful, spiritual. Yet once there, I couldn’t pray. I felt
suspended. Not angry. Not afraid. Not anything. Just there. I tried
repeatedly, went down to the chapel. Nothing. I returned to the waiting
room and sat. Hour after hour. Not praying. Not even thinking. I just
kept saying, “Listen to their prayers, God.” I knew the church and
community and so many others would be praying. It was as if I’d
I think it was being separated from community. I
needed to know they were somehow within touching distance. Without them,
part of me was disconnected. I could not be fully me. When I returned, I
could pray again. But it was different, less anxious, less insecure. I
slowly began to recognize how much had changed inside.
always separated death and resurrection into two distinct processes. One
bad, the other good. I learned they are parts of the same experience,
the same process. The heart failure was a blessing, just as the heart
transplant was. For hours in that waiting room, as the transplant was
unfolding and afterwards, a conduit opened between our family and the
donor’s family; their pain, their grief flooded our hearts. We wept with
our joy and their sadness. Joy and pain were immeasurable and
After resurrection came the challenge of living in
this new post-resurrection state. For Kristin this meant freedom
(jumping in the shower whenever she wanted!), but her bursting
liberation was accompanied by a suppressed immune system, a daily
cocktail of meds, biopsies. Still a bit bewildered, we walk on — Kristin
ahead in her heels, Mary and I trying to catch up. Emmaus can’t be far
ahead.Bill Millar is a pastor at Knox United in Winnipeg.
Sidebar: 'I am alive because of a stranger'By Kristin Millar
my heart failed, organ donation was not something I had thought about.
Never in a million years would I have imagined that by 29, I would have
survived cardiogenic shock, multi-organ failure, seven strokes, two
years on the transplant waiting list and, finally, a heart transplant.
What’s maybe more unbelievable is that I wouldn’t change a thing about
the last three years. Heart failure and transplant have been the
greatest gifts I could imagine.
While it hasn’t always been
easy, every day since my heart failure was discovered, every day that I
was attached to my VAD (a battery-powered ventricular pump that I
carried with me at all times) and certainly every day since my
transplant, I have woken up grateful.
I am alive because of a
stranger. I am alive because a family, in the midst of their
unimaginable grief, made a selfless, courageous and kind decision that
saved my life. There are no words to adequately capture my gratitude.
The only thing I can do is give this heart the best home I can and live
my life trying to give back a small amount of the same selflessness my
donor family has shown me.
This journey has given me so much
more than a new organ. Before my heart failed, I was focused on myself.
My life was filled with closely monitored schedules, and I held firm to
the illusion of control. The only faith I had was in the consistency of
my meal and exercise plan.
One of the reasons I am so grateful
for this entire experience is that it has forced me to accept my lack of
control. There is nothing like waiting for a transplant to drive home
the lesson that I don’t dictate my own life. I let go. And surprisingly,
it felt good, like a long-awaited exhale or opening up a tightly closed
fist and feeling my fingers move for the first time in eight years. I
didn’t have to carry everything anymore. That’s when I learned how to
trust. My job became, and still is, to get out of my own way, to accept
what is given to me when it’s given to me. The most striking feeling I
have had through all of this has not been fear or anxiety; instead, I
have never felt alone.
This doesn’t mean I haven’t struggled. I
have. I have struggled to answer the “Why me?” question: Why should I
benefit from the death of another? Why did she die and I live? How will I
ever be worthy of that? I have tried to let go of the guilt — the guilt
both when I feel joy and when I feel grief.
I’m not only living
for myself anymore, and although a heart transplant isn’t a magic pill
that makes everything better, I’m even grateful for the pain and the
struggle because I’m here to experience it. That is a gift. I can’t
imagine anything more beautiful than life being given out of death; hope
out of despair; joy out of pain.
Organ donation saves real
people. What can you do to help? One of the biggest hurdles organ
donation faces is that it’s not talked about. The most important thing
you can do is have a conversation with your family about your wishes. If
something happens to you and they don’t know your wishes, they are
likely to refuse donation.
All I really hope is that you think
about becoming a donor. And while you’re at it, be grateful that your
heart beats. It’s amazing how the miserable weather or the traffic jam
on the way to work won’t matter quite as much. GO ONLINE:
provinces now have online registries for organ donors. Even if you have
signed a donor card, your licence or health card, it’s important to
also sign up online.
• British Columbia: transplant.bc.ca/OnlineReg/bcts.asp
• Manitoba: signupforlife.ca
• Ontario: beadonor.ca