Avoiding the 'unrealistic bubble': How to support a child through suffering

This piece was originally published on Nov. 14, 2018.

There is no parenting instruction manual. You have your own experience growing up andyou have the examples of family and friends. Other than that, you are pretty much operating on intuition.

I have three children under the age of eight. As they get older, I'm beginning to be more concerned about the kinds of people they are growing up to be, and whether they have the skills needed to navigate increasingly complicated situations.

This series is an attempt to share some of the wisdom I have sought out in an effort to be a better parent. It starts by tackling one of the hardest things a parent can do:watch a child experiencing emotional and physical pain and suffering.

FranGilboylives down the street from me in Regina. Last December, I was saddened to learn her teenage son,Manni, had testicular cancer. I'd watchedMannigrow up, from a rambunctious child with a shock of blond hair to a confident teenager whosnowboardedand played football.

"I remember the first night we found out he had cancer. We were sitting here and I said, 'Manni, banking on everything going OK, you are going to be a way more interesting person at the end of all this.'"

Fran acknowledged that sounds like a strange thing to say to a teenager who just found out he has cancer, but it comes from a place of honesty and experience.

"It wasn't this thing of trying to find the silver lining or trying to find the positive in it all. ... It's a deep, deep truth that when you move through suffering and you get to the other side, you've learned about yourself, you've become intimate with your fears, and now you've lived through it and become so much more interesting."

The lump

Late last year,Manni found a lump in what the 16-year-old described as "a bit of a private area." He kept it to himself at first, did some Internet research and scared himself into going to a walk-in clinic. Eventually he was referred to a specialist and told his parents about the lump.

Manni remembers sitting in a doctor's office with his mom and dad. The doctor told them Manni had a mass in his right testicle. He was 99 per cent sure it was testicular cancer. He told them it was growing fast and they were going to have to remove the testicle to keep it from spreading.

Manni stared at the floor for the rest of the appointment. "I couldn't hear anything except pounding in my head, and it was just really weird just disbelief. I thought he was joking for a few seconds, but he just kept talking and I knew it was real."

He had planned on going to a birthday party that night and still wanted to go. He said he needed the distraction. An hour and a half later, Fran got a call:Manni was at home and needed some company.

"I just witnessed a real steadiness in Manni. There was fear; there was tears; there was laughter; there was contemplation," said Fran.

"I really loved witnessing him be present with whatever was arising, and I really felt like my job wasn't to make him feel better, but to let him take the lead and engage in whatever conversation or distraction Manni needed."

Fran said sometimes that was conversations about loss and suffering, and other times it was watching a movie until the early hours of the morning.

Death as a teacher

Knowing how to bear witness to suffering is a skill Fran has spent decades refining.

Fran lost her mother to breast cancer at the age of 12, and then a daughter 10 years later.

Fran was full term and woke up one morning without feeling any movement. Ultrasounds couldn'tfind a heartbeat. Fran's greatest fears were confirmed.

A few years earlier, Fran had started a mindfulness practice. She learned about Theravada Buddhism, which involves contemplation on death and dying. Two years ago, she did an intensive two-and-a-half-year program about awakening through death, dying, aging and illness. She considers death one of her greatest teachers.

"I've worked really hard. Like how a bodybuilder goes to the gym to work their muscles, I've really worked to practise this, so I'm not uncomfortable around it," she said.

Fran said one of the things she is acutely aware of is how many parents these days are trying to keep the world away from their kids.

"All the dangers and misfortunes and all that's in the world, kids know it's there and it's a great opportunity for them to experience it under your guidance and let it unfold."

The death of Fran's first child changed the way she approached life with Manni.

"It was a lesson in impermanence: you don't know how long you have your children. I realized I could either become more overprotective or I could let him have this amazing life for however long he has it."

But this experience really tested her practice.

The surgery

The first course of action for Manni was to remove his cancerous testicle. It was a fairly simple surgery. He was in and out the same day.

Since the surgery happened right before school let out for the Christmas holiday, Manni recovered over the break and was back at schoolin early January. When he realized the magnitude of what had happened to him, being in such normal conditions highlighted a lot of the trauma he'd experienced.

Manni felt betrayed by his body. One of his big fears was not being able to trust his body or fully relax into it again.

The teen requested to see a therapist so he could work out his anger and confusion.

He also threw himself into weightlifting. He packed on nearly 20 pounds between January and May, which Fran believes helped him regain trust in his body.

But then he received news the cancer had returned.

Chemo: The deep unknown

Manni's oncologist recommended starting him on chemotherapy.

Fran was worried. The word "chemo" evoked for her memories of 1988, when she had been sent away from the house while their mother threw up for days on end. The doctors assured them that chemo had come a long way since then, but as Fran describedit, this was going into a deep unknown.

The treatment started in mid-June, during finals. Manni had to leave school earlyand watched as his plans for the summer were replaced with fending off cancer.

Fran said one of the most difficult things as a mother, drawing from something she'd heard elsewhere, was watching "the pilot light go out. The body and face are there, but there is something different. That life force inside is dimmed."

She struggled watching Manni lose these things he'd worked for, including a job at a summer camp.

Manni weighed 185 pounds before the chemo; nine weeks later he was 155 pounds.

He had no energy and no immune system.

"I mourned with him. I could sense the kind of mourning that was happening," said Fran.

"A lot of my summer nights were spent staring at a wall because TV was unbearable, looking at my phone was unbearable," said Manni. "It just kind ofgot old. It was just this loop that I was in and I wanted out, which is why I think I've changed, because I had way too much time for contemplation."

Fran acknowledges Manni was in a dark place, and she has a lot of respect for what she calls the grace he had while moving through that place.

"My biggest suggestion would be to not be afraid of the dark place. I think as parents we try and create really optimistic environments for our kids and it can be a bit of an unrealistic bubble," said Fran.

"When Manni was feeling really down, or really dark and depressed or scared, I didn't try to fix it; Ijust let him experience it, because I didn't want to minimize his experience. There were moments when I wanted to protect him from it, but I felt the importance of not protecting him from that. I'd say for parents to just let there be space for all of it."

'A joy and terrifying to watch him grow'

Manni said he sometimes mourns the person he was before cancer the teenager who cared about what he calls "the stupid stuff like Instagram followers and 'likes'" and who always seemed to have a lot more fun.

But he acknowledges the experience has shaped the way he sees the world.

"Do what you want. Not YOLO(You Only Live Once) I hate saying that but it's kind of true."

The experience has also taught him about the importance of relationships.

"There are some people in your life who are temporary. I think you kind of know that in the back of your mind. It might take an experience to show it," he said. "And there's people who will be there for a long time and cherish them."

Fran is noticeably proud of her son, but it's evident that respect and admiration goes both ways.

"I'm here to give him tools and be a soft place for him to land. Being a mother is my favourite job in the world. It's a joy and terrifying to watch him grow."