Tackled
by shock, I couldn’t breathe. I had quarterbacked nearly two years of
his cancer treatment. I knew every player and every play. He had an
all-star team from the start. Yes, we’d been on the defensive since his
leukemic cancer relapse. I fought furiously to get him on a (supposedly)
life-saving immunotherapy trial, in which his own immune cells were
reprogrammed to attack and destroy cancer cells. Chimeric antigen
receptor t-cells (CAR T) had been his Hail Mary treatment 12 days ago.
Now we were waiting and watching, at the edge of our seats and hospital
bed, for them to kick in and work their magic. CAR Ts for the win! Wait.
Was I hearing, amidst the chaos in the hallway, that the miracle CAR T
therapy had failed? Yes. The ball had been fumbled, we were out of
plays, and time was up. I was told, “Your son is dying.”
There was one person who was going to be more shocked than me.
Choking
back tears, I took a deep breath in, held on to that gulp of air and
went back into the room to sit next to my imminently dying child.
Without a breath, I pushed out the words, “We need to talk.”
What do you say to a dying person?
A
few weeks earlier, on another Monday afternoon, I was lying in bed with
my son. It was back before his body hurt too much to be touched. Back
when I could still curl up in his hospital bed with him. I whispered, “I
love you,” as I often did.
He said, “I know.”
Of
course he knew. He knew everything I did was for him. Our beloveds know
we love them. We say it. They see it. They know. So, what more can we
say? What words can we give them when there is nothing left but words?
Especially when words seem like they are failing. And words do fail.
There are no words for the time your eight-year-old dies in your arms.
Even if there were (and, I promise you, there aren’t), most people will
not need them because most people will never be in that unimaginable situation. But most of us will face other painful times sitting next to a dying person.
How
do I know this? Because our mortality rate is 100%. One day, we will
all be a dying person. And before that, we may be close to several, or
to many. We all need to know how to sit and talk through a time for
which there are no words. When not even an “I love you” will suffice.
How do we catch our future selves? How do we comfort our dying loved
ones now?
I slowly let out my held-in breath and said, “I am so sorry to tell you this, but you are going to die.”
“Wait — what? I don’t want to die!”
He
was stunned, and furious. His big, crystalline blue eyes widened. Maybe
it was his soft, bald head and the lashless lids framing those eyes,
but his blue eyes were all I could see. Added to the mix of love and
fatigue, I now saw fear. My mind went on a frantic race to find the
right words to cradle and calm him.
“I
am so sorry. I know. But we are all going to die whether we want to or
not. I am going to die. Dad is going to die. We are all going to die and
we don’t have any control over it. I am so, so sorry. “
“When am I going to die?” he asked. He was, as always, curious and thinking things through.
“I don’t know, but soon.”
“What?!”
Anger
and disbelief bubbled back up. Does it come as any surprise that he was
more shocked than I to hear the news he would be dying soon? He was a
child; he believed us with magical wonder when we told him he would get
better. Just like he believed us when we promised the Tooth Fairy would
exchange his lost tooth for a gift if he tucked it under his pillow. We
had assured him he would get better. He had done everything asked of
him — every difficult, painful, nauseating thing. And now, my sweet,
darling, silly monkey and I were staring wide-eyed at each other, with
100% mortality in between.
Delivering
this message was the hardest thing I’ve ever had to do. But I had to
stay calm and say more. I had to find impossible words — words that
would bridge the gap between life and death and make his predicament
palatable. Three phrases welled up that became a touchstone for us in
the days that followed. I call them “three magic phrases to say to a
dying person” now. At the time, they were a lifeline of connection for
the two of us and for the rest of our family.
Here is what I said to my distressed, dying child, as lovingly and reassuringly as possible: “You will not be alone. You will not feel pain. We will be okay.” He needed each of these phrases more than “I love you.”
1. You will not be alone.
Letting him know you will not be alone was
important because he was human — a social, silly, lovable animal. As
the youngest of our four children, he was accustomed to chatter and
chaos. From birth, he was playful and craved connection. That’s why he
would crawl in bed with me in the middle of the night or ask me to play a
game of Sorry or wait patiently for me to read him a story. He
especially craved company when he was scared, like on the first day of
preschool.
The
first day was only an hour long. The children traced their names on
nametags, listened to a story on the rug and did a craft project. He
stayed tucked between my legs, clinging to them when not focused on an
activity. Preschool was going to be a blast and he’d make the best of
friends but he didn’t know this yet. All he knew was that everything was
new and it scared him. Fast-forward to this Monday afternoon when he
had just been informed he was going to die. He was heading into the
biggest and most unknown of all experiences. He needed to hear he would
not be alone.
2. You will not feel pain.
My
child had endured a tremendous amount of pain over the past two years.
The pain of pressure building up from inside his bones, blooming cancer
cells ready to burst out, was one of the first signs. One day, it was
suddenly too painful for him to walk. Then there was the pain of
treatment, with its constant needle pokes for blood draws, bone marrow
biopsies and spinal taps. Headaches, nausea, and general
malaise — having cancer was a literal pain. Not to mention the social
and emotional suffering. You will not feel pain was important because he needed to hear that even though we could no longer contain the cancer, we could soothe his nerves.
3. We will be okay.
Saying we will be okay was
the most important and the hardest of the Three Magic Phrases. I simply
didn’t believe it. I had a clasping, nearly crushing hold on hope up
until the very moment I heard, “Your son is dying.“ I thought he would
pull through and somehow live the long, glorious, trouble-free life that
he deserved. How could I ever hold hope close again? Saying we will be okay was
saying the impossible. We are not okay without him. But I had to say
it, for him. He cared deeply about others. If I asked, “What movie do
you want to watch?” He would often answer, “Whatever movie you want to
watch.” In third grade, he had an assignment where he had to choose a
cause to support. He chose cancer and he said this cause was meaningful
to him because “I want everybody to stay healthy and because I have it
[cancer] and I want everyone and myself to get better.” Even in the face
of his own mortality, with a life-threatening illness, he was thinking
of others. He would not be okay unless he knew we were okay. He loved us
beyond measure. We did our best to love him back the same amount.
He
did not die in the two hours that followed. We called in our closest
circle and Skyped with family and friends far away. A beloved babysitter
brought in a guitar. The curved, wooden instument was unclasped from
it’s case. Strummed music floated through the room like butterflies. We
sang. Best pals dealt Uno cards. We poured butterbeer, the type Harry
Potter would order on a trip to Hogsmeade, into waxed paper cups, passed
them out and toasted, “To Ewan!” The hospital even allowed his puppy to
come in for a little tail-wagging and a few wet kisses. Friends left
and night descended. Dad and I tucked in next to him, dimmed the lights
and read from Harry Potter and The Half-Blood Prince. I didn’t sleep. Miraculously, he didn’t die that night.
What
followed was a memorable week of play dates and parties. Out-of-town
family and friends flew in. We enjoyed an enormous, circus-themed party
on the hospital’s garden rooftop. There were acrobats, a magician and a
band made up of talented elementary school music teachers. His friends
wore Hogswarts robes and superhero costumes. Everyone ate chocolate
cake, sang, danced and celebrated his life like there was no tomorrow.
All week long, I repeated, “You will not be alone. You will not feel
pain. We will be okay.”
There
are no magic words that can catch and carry and keep a person crossing
into the end zone. Words cannot keep a loved one from dying. The
morphine drip increases in strength and frequency. Exactly a week later,
holding my hand, he died. I died that day, too. There are no words that
fill in for his silenced silly and cherished company. I feel incredibly
alone. It is unimaginably painful. That’s when I repeat the Three Magic
Phrases in reverse order. We will be okay. You will not feel pain. You will not be alone. I
feel myself caught in the arms of my beloved child. Now, I am not
alone. Then, the pain eases. I will be okay. This is the beauty of the
Three Magic Phrases: dying people live on as long as we go on
remembering them. And repeating the phrases we said to them is a very
direct connection. Our loved ones catch us, daily, and keep us going.
And in turn, when it’s our time, I hold on to hope that we too will find
comfort in a few magic phrases.
grief, death, pain
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