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When my daughter was in the hospital, this was what kept me sane

It took a few weeks of trial and error, meltdowns and tears (mine) to figure out effective, simple ways to manage the stress of caring for a critically sick child

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After a team of doctors told me that my 4-year-old daughter had Stage 4 high-risk neuroblastoma, I laced up my sneakers and ran. For an hour, I jumped on and off city sidewalks and tried to process whether I had the stamina to endure 18 months of treatment to rid her of the cancer that a doctor said “lit up like a Christmas tree” on a scan.

I didn’t know how to parent a kid with cancer, never mind how to take care of myself while doing it. My left eye twitched incessantly, and I popped ibuprofen like Skittles to treat headaches that wouldn’t go away.

Whether it was because I isolated myself, or because pediatric cancer made people feel uncomfortable, no one could give me concrete advice on how to get through the day. Meditating was mentioned by a well-intended family specialist on the oncology floor, but that wasn’t an option because I spent the day holding my breath.

The hospital’s makeshift parent bed and incessant takeout food didn’t help, but it was the lack of control and structure to the day that made everything — especially me — worse. Line infections, concerning blood counts and Emily’s reactions to medicines and chemotherapy were overwhelming. I wanted to opt out, yet as her mom, I couldn’t. I needed to rally.

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It took a few weeks of trial-and-error, meltdowns and tears (mine, not Emily’s) to figure out effective, simple ways to manage unpredictable hospital days and combat the stress of parenting a critically sick child. When I did, my days shifted, and I was able to take back some of my power that cancer had stolen.

Every morning, I fired up my “anchor music”: a soundtrack of three songs I played on rotation. The repetition gave me a familiarity I craved; a long playlist on shuffle felt chaotic and volatile. Coldplay, Eminem and Beyoncé primed me for the day while I walked the hospital hallways or waited in line at Starbucks. Upbeat and empowering, my musical mantras blocked out the world for a few minutes so I could suit up for doctor’s rounds and my role as a pseudo nurse, both of which required laser focus.

Musical interventions like these are known to reduce stress in a variety of settings by triggering physiological arousal (such as heart rate, blood pressure and hormone levels) and reducing psychological stress (such as restlessness, anxiety and nervousness).

“There’s a profound strength in pulling energy into yourself,” says Denise Morett, a psychologist and the author of “Lifeline: A Parent’s Guide to Coping With a Child’s Serious or Life-Threatening Medical Issue.” “It’s grounding and allows you to separate from over-identifying with your sick child. It helps create a bubble to keep you safe.”

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With a solid morning routine in place, I was careful to avoid triggers that had the power to take me down. A 2020 study about trigger warnings found they’re not helpful for trauma survivors in reducing anxiety or preparing them to engage in difficult situations. Avoiding them was key to my well-being. Instead of watching the news or engaging with family and friends who asked too many questions about cancer, I filled my days with fluff.

Reading magazine articles about the Kardashians and bingeing episodes of “Modern Family” focused my attention on mindless issues, which allowed me to stay calm and zone out.

Social media annoyed me more than distracted me, so I stuck with “The Bachelor” or a few pages of a sappy romance novel. Moments that weren’t filled with intense high-stakes care for my daughter were opportunities to pacify my mind with pleasure, something my life lacked.

Morett says pleasant distractions provide the body with the opposite experience of adrenaline and allow us to stay healthy mentally and physically. Taking time to step back from the situation alters how we think in the moment and prevents us from getting burned out.

Parenting a 4-year-old, never mind a sick one, required breaks. Being confined to a small room with beeping machines and “SpongeBob SquarePants” blaring in the background left me desperate to escape, so I did. Some days, I felt guilty about leaving, but most of the time, I felt as though I didn’t have a choice.

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When my father arrived to relieve me, I ran on the treadmill at a gym nearby or dodged pedestrians on the street. Instantly, I felt relief from the incessant chatter in my head about Emily, cancer, my healthy daughter and how we were going to make it through what seemed to be the impossible.

Research shows that running has important positive implications for mental health, particularly depression and anxiety disorders, both of which plagued me. I wasn’t a great runner, but that didn’t seem to matter. Any regular exercise is associated with emotional resilience to acute stress. When I couldn’t get out to run, I took a cue from a fellow cancer mom and ran up and down the hospital stairwell.

Moving my body helped me be a better mother to my sick daughter. I was more patient, less resentful and better equipped to make decisions about Emily’s care. A lukewarm Diet Coke at CVS didn’t send me into a rage.

When my husband and I switched duties, I brought home my hacks to get me through the day. Caring for my healthy 6-year-old daughter and working as a high school teacher — while thinking incessantly of Emily in the hospital — required surefire ways to cope. I listened to 1980s hits while I packed Isabelle’s lunch, took quick runs after school and watched “Kung Fu Panda” at night instead of scrolling through Facebook.

It turned out that feeling better didn’t need to be complicated, but it did need to be a priority. It was easy to feel selfish for having needs, but when I was well cared for, Emily was well cared for. It was the only way to sustain more than 300 nights in the hospital and the days between at home.

Now 17, Emily has recovered, but the intense treatment left her with several chronic medical issues that keep me on alert. Not only am I parenting a teenager who thinks she knows everything but also navigating her endless doctors’ appointments for hearing, kidney and endocrine issues. The strategies I put in place over a decade ago continue to make my days doable.

Over time, Lizzo sneaked into my playlist, “Ted Lasso” replaced “Modern Family,” and a walk felt better than a run. I take comfort in knowing I have everything I need to get through the day. And that’s something parents with sick kids want to be able to count on.

Amy McHugh is a freelance writer on Cape Cod who is working on a memoir about parenting, perspective and messy new beginnings.

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