Parenting Through Terminal Illness |
 | | Mikyung Lee |
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One night last fall, as I sat in bed with my 9-year-old son, Cohen, he looked up at me through tears and asked, "Do you think Daddy will have a long life or a short life?" |
It was a big question from a little boy, but not an unexpected one. |
Two years ago, my husband, Chris, was diagnosed with the progressive neurodegenerative disease amyotrophic lateral sclerosis, or A.L.S. Doctors said he had six to 12 months to live. He was 37 at the time. |
Thanks to a promising clinical trial Chris is still very much alive, but the experimental medicine injected into his spine every four weeks has not worked perfectly. He first lost the use of his dominant hand, and then, after nine months of no disease progression, his face started to change. What began as a slightly lopsided smile snowballed into almost total atrophy of his facial muscles. His lips weakened, so he could no longer purse them together to make consonant sounds or to kiss us. Then his swallowing muscles deteriorated, and he began choking on his food. |
It was terrifying for all of us. For Cohen, the panic was palpable. His heart would race. He would sob and sweat and look at me desperately for reassurance that his dad was not going to choke and die. Our 6-year-old daughter, Willa, would reassure her brother, and herself, with a mantra we created for these episodes: "It's OK, Cohen. Remember, coughing is not choking." |
After Chris was diagnosed, people often told me, "The kids will be all right," and while I understood the sentiment, I found it an immense oversimplification. The path to "all right" would undoubtedly be long, winding and, ultimately, up to me and Chris. We started reading about kids and grief; found therapists that were a good fit for both Cohen and Willa; and sought the advice of experts who work with families facing terminal illness. |
Andrea Warnick, a Toronto-based psychotherapist who holds a master's degree in thanatology, which is the study of dying, death and bereavement, has spent more than 20 years supporting grieving families and kids. She told me that while helping a grieving child can feel overwhelming, the most important elements are simple: Caregivers should work to form a secure attachment with the child and to facilitate open, honest communication. |
"I consistently see so many families where really hard stuff happens, and those kids are still able to thrive in the world," Ms. Warnick said. "Those kids have adults in their life who are emotionally available to them." |
A secure attachment, Ms. Warnick said, means that a child feels safe coming to a parent with anything that is on their mind, and that the parent accepts those questions and feelings without judgment. |
"I talked to a parent last week and the question was, 'When my brother dies, can I get his Nintendo gaming system?'" Ms. Warnick said. "The parent was horrified, but I'm like, 'Don't shut it down! It doesn't mean he's not grieving his brother. It doesn't mean he's not upset that his brother's got cancer. It's just a very practical question.'" |
She said that parents who have an ill partner should strive to be as honest as possible with their grieving kids, even when honesty is hard. But establishing free-flowing communication doesn't mean you'll magically have all the answers. According to Diane Vines, a marriage and family therapist and clinical consultant for the Houston-based ChildTrauma Academy, how we react to a child's emotions can sometimes be more important than what we say. |
During those moments when Chris stood up from the dinner table gasping for air and our son panicked, the key, Ms. Vines said, was that I did not. |
"When you're watching somebody you love possibly choke to death, that's upsetting," she said. "We look around to see, should we panic right now? What should we be doing right now? What is everyone else doing?" |
When parents manage those feelings with relative calm, children will often feel reassured and react more calmly, too, she said. |
One day during those traumatic weeks before Chris got a feeding tube inserted to help with the choking, I was driving Cohen to hockey practice when out of the blue he said, "My life is harder than a lot of other kids my age." I told him he wasn't wrong, that I was sorry and that I love him. I asked what was on his mind. He shrugged. He didn't seem sad or angry or worried or scared. He was simply stating a fact. |
Most parents who contact Ms. Warnick are looking for the right language to use with their children, she said. "The harder job is actually being able to bear witness to our children's suffering," she added. "I think one of the most wonderful things we can do for kids is teach them about grief, and teach them that they have the capacity to survive their feelings, even the most intense ones." |
Some months after Chris's feeding tube had alleviated our kids' panic, I tucked Willa into bed. That night she giggled and hugged me as hard as she could. "You know what, Mommy?" she said. "Sometimes I forget that Daddy has this sickness." |
I kissed her cheeks and told her I was so happy she has those moments of forgetfulness. Letting kids know that it's OK to forget about their sadness and feel happy, Ms. Warnick said, is important. |
"It doesn't mean that you're happy because your dad has A.L.S.; it means it's absolutely OK to enjoy life and be happy, even though your dad has A.L.S.," she said. |
She reminded me that grief isn't a problem that needs fixing. |
"I'm always trying to help kids understand that grief is not pathology," Ms. Warnick said. "There's nothing broken. It's a natural response to a hard situation, and it's rooted in your love for your person." |
Their father's terminal illness is a part of my kids' reality — I can't change that. Instead, I will try my hardest to bear witness to their suffering. It won't be perfect. I won't always get it right, but we'll do it together. |
Read More About Family and Grief |
- The pandemic has brought illness and death front and center for many families. Dr. Perri Klass and science writer Melinda Wenner Moyer each explored how to approach grieving with children.
- Marisha Pessl and Sophie Blackall wrote about books that can help explain death to children and start conversations about grief.
- Films about the fragility of life can similarly help parents explain loss to kids; Stacy Brick suggested 7 movies to help children dealing with grief.
- Jessica Grose wondered in a previous NYT Parenting newsletter why small children often want to talk about death.
- Christina Caron tapped experts for suggestions on how to begin healing in a season of grief.
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| Parenting can be a grind. Let's celebrate the tiny victories. |
My 4-year-old is obsessed with the Olympics right now. To encourage her to clean up her messes, my husband and I turn her chore into an Olympic event. We pretend to be the announcers and if she completes the task and breaks the world record, it's a gold medal! — Amy Gabbert, Minneapolis |
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