Category Archives: Terminal Cancer, Day by Day

What to Tell the Kid

I’ve been preparing Isaac for his daddy to die for months now.

The subtle work had already been done: my librarian mom stocked his bookshelves with books about feelings, death and saying goodbye about a year ago.

But sometime this summer I realized Isaac was spending too much time watching YouTube videos of dads playing with their kids. Specifically: The Axle Show. Isaac would watch this show on our iPad while his own dad napped through the afternoon. I realized I had to explain why Brock wasn’t playing with Isaac the way other dads played with their kids — or even spending as much time with Isaac as I did, even though all three of us were home.

So I started by explaining to Isaac that his dad was sick. Not the normal kind of sick that Isaac or I got sometimes — a different kind of sick. It was the kind of sick where, although some days his dad might feel better, Brock would never get better.

And, eventually, his daddy would die.

And then of course Isaac asked if he would die, and if I would die, and I said yes, everyone dies eventually, but Isaac and I wouldn’t die for a very long time, until we were very old (I hope!).

Keep in mind — Isaac was three when we were having these conversations, so I would say something and then he’d get distracted by a Hot Wheels car, and then a week later he’d ask about the dying part and I’d answer and then he’d want to play in his sandbox.

My research into kids and grief said that there are four key questions/messages that need to be dealt with, sometimes over and over again. They are:

  1. “Did I cause dad to get sick and die?”
  2. “Can I catch it?”
  3. “Can I cure it?” (Isaac loved to play doctor and give his dad medicine.)
  4. “Who will take care of me when dad dies?” (I tell him every day that it’s mom and Isaac, together forever.)

Once we had the “sick” conversation, Brock and I noticed Isaac saying he was “sick” more often. We would remind Isaac that he was healthy-person sick, and that he would get better.

Oh, I just remembered Isaac saying this on a camping trip this summer:

ISAAC: “When I grow up, I want to be a daddy and get sick.”

That destroyed me and Brock. It’s hard to be a grown up and respond properly to stuff like that.

It was very tempting — at many times over the past year — to send Isaac to stay with my parents and sister’s family in Invermere so that I could focus on Brock. But Maggie Callanan’s Final Journeys emphasised the importance of children being part of the dying process, both to help them with their own grief and so that adults could model grieving behaviour appropriately. Luckily my mom came to stay with us for five whole months this winter, and Brock’s parents and brother’s family took Isaac for play days on a regular basis this summer. I was able to take care of Brock as he became sicker, and Isaac was still active and having fun.

Isaac was here when his dad died at home last week. He was the first person to come into the room to say goodbye (which was his choice — I wouldn’t have made him do it). Then he went back out to play.

In the week since Brock died, my sister and dad have been staying with me: we try to have consistent answers for Isaac’s questions, which he asks at random times.

He wants to know where his dad went. (“Daddy died, remember? He’s going to turn into dirt, and flowers and trees will grow out of the dirt.”)

He asks when his dad will be back. (“He died, so he won’t be coming back. But your mom is here to take care of you and we are here too.”)

These spontaneous questions are like little paper cuts. But it’s our job to answer him truthfully and patiently.

I’ve read that children who lose a parent have to re-deal with their grief from different angles over and over again as they grow up. The questions and challenges Isaac has around his dad’s death as a four-year-old will be different from those he has as an eight-year-old, or a fourteen-year-old, or a young adult. I’ve dreaded this ever since I read it.

I am putting together a “Box o’ Brock” for Isaac, full of Brock’s favourite clothes and books and his special coffee cup. Brock wrote a letter to Isaac that I’ll include in there, and his friends are going to print out their epic Facebook Messenger conversations, which capture so well Brock’s voice and brain. We will always have photographs of Brock on the walls, and I’m already reminding Isaac of what Brock would say in certain situations (“It’s important to carry your own soccer gear. Dad says the best athletes do that.”).

As hard as Brock’s death is on me, his parents, his brother and his friends, no one is more destroyed by this than Isaac. He has lost his dad, who would have been a proud coach, teacher and role model. Brock wanted them to take piano lessons together. We were going to learn Latin, as a family “secret language.” Isaac would have learned how to skate backwards like an NHL star, and how to throw a baseball properly.

Isaac doesn’t understand yet what he’s lost, and my job is to support him as he grows older and begins to realize.

And I hope four-years-old is old enough to remember his dad.

Watching My Life Partner Die

Nurse Bonnie’s theory is that the infection Brock battled last week in the hospital drained the last of his batteries.

We came home from the hospital Thursday, then spent a wonderful Friday together. For dinner, Brock craved and got a McDonald’s Big Mac (I don’t judge; I enable). This was the last thing he ate.

Saturday was a lazy day, with Brock sleeping and me writing/reading beside him in our bed.

At 11pm I tried to give Brock his last antibiotic pill of the day. He sat up, still mostly asleep, and his mouth couldn’t remember how to drink from a straw.

Or maybe he just didn’t have the energy to suck from a straw anymore.

Brock’s parents and brother came over and for the next four days we made Brock as comfortable as we could while his body gradually stopped working.

Unexpected Thing #1: the full house

I thought I would want to be alone with Brock at the end, although of course I would (reluctantly) share him with his parents and brother’s family.

But that is not at all how I felt this week.

After Brock’s parents and brother were here, I invited his best friends to come say goodbye (and just sit in the living room) Sunday. On Monday I invited more family, and then more friends.

Because so many of us shared the work of adjusting Brock’s position in bed and moistening his mouth and changing his sweaty pillowcases and wiping his forehead with a cool cloth, I was able to just lie beside him and hold his hand.

Family made huge meals, washed laundry, swept floors, and even cleaned our bathtub.

Brock was never alone — and sometimes his room was too full to fit anyone else. It was wonderful.

In addition to sharing the work, I felt like everyone was sharing the grief.

Unexpected Thing #2: the parallels

I’ve read a lot about dying and grief over the past few years, and often read that the birthing and dying processes are similar.

But holy cow, there were so many moments where Brock’s dying room could have been a birthing room.

At one point, Brock’s dad was timing Brock’s breaths just like a man times his wife’s contractions.

My job was to tell Brock whatever he needed to hear, and hold his hand.

Unexpected Thing #3: the final exam

I’d inadvertently been studying for Brock’s death for months. All of a sudden he wasn’t able to speak or even communicate with his body, and it was up to us to decide what he needed.

I knew exactly how to give Brock a back massage that wouldn’t hurt his tumour-y areas.

I knew his favourite sleeping positions, to alleviate his cancer-caused back pain and bony body.

I knew that he hated having his feet touched.

I knew he didn’t want to be in pain, but he also didn’t want to be sedated, so we avoided giving too much pain medication.

I already had a Brock playlist on Spotify, so we could listen to all his favourite songs. We sang aloud to Mr. Jones (his favourite song) and I think he smiled.

I knew his favourite movie was The Two Towers from the Lord of the Rings trilogy, so we watched that with a room full of family and I fast-forwarded over the Ent scenes because they bore Brock.

And most importantly: I knew what he needed to hear, or at least I hope I guessed correctly. For four days I had to rely on Brock’s eyes and rare grunts to guess how he was feeling. I figured Brock was confused about what was happening to him, so I explained over and over again that this was not another infection, this was the end of his life. Our job was to keep him comfortable and pain-free, and his job was to let go whenever he was ready.

I promised him that I would read the financial management book he’d given me, and that I would do my best to control my spontaneous tendencies and ask trusted friends and family for their input in my big life decisions. I promised I would stick to our annual Lego budget.

No regrets

I’m so happy we went to the hospital last week to deal with Brock’s infection, even though it was hard on him. It would have been much worse for him to die feeling flu-sick. Instead, he was just very very tired.

I’m grateful we had all the conversations we needed to, while we still could. I never held back. I asked him all the hard questions and we talked about everything, from how to raise Isaac to the memorial scholarship/bursary we planned to start.

On Friday, which turned out to be his last aware day, I told him I didn’t want him to die and that I couldn’t give him permission to die. (These are the sorts of morbid conversations we’ve had regularly since he was diagnosed!) And then I thought about it a bit more, and retracted my statement. I said that I didn’t want him to suffer and so when he was ready to go, I would let him go.

Aftermath

I was very sad immediately after Brock went, especially when I had to tell Isaac his dad had died.

But by Thursday I was blank. I think I’m still in shock, even though we knew he was dying. Two analogies to describe this feeling:

  1. I feel like I’ve just ridden a rollercoaster. The ride just ended and the rollercoaster has pulled up to the loading platform. The brakes stop us. I’m not ready to stand up yet — I want to talk about the ride, to reflect on that highest peak and the sudden drop. And I have no idea what to do after I stand up.
  2. I feel like an iPhone that’s just been factory reset. A blank canvas. No personalized apps or custom wallpaper.

I can’t even read the grief book I bought in advance, because it’s describing a kind of gut-wrenching grief that I’m not feeling. I’m just empty.

To help work through this numbness, I’m trying to downplay my final memories of Brock, physically destroyed by cancer, and bring back my memories of how he was for most of our 11.5 years together. That huge smile and his sexy ass. His quiet brilliance. His enthusiasm for new projects and the first strawberry of the season.

I loved him so much.

Brock in 2006, on our first roadtrip together.