One unexpected piece of advice that became a lifeline through my darkest times

Eight months into my six-year-old daughter’s second 2.5-year course of chemo and radiation to treat her leukemia, I was burned out beyond description, and I was unraveling. My nights were a storm of restless what ifs.

“Am I doing this right? Am I doing enough?”

“Should I ask them to delay the next round of chemo until she’s feeling better?”

“Are they really considering the person at the heart of these brutal protocols?”

“Shouldn’t we be exploring alternative and Eastern medicine too? Maybe not instead of all the poison, but at least to support her through it!?”

“Are they hitting it hard enough this time? Is it going to come back again!?”

“What about Nadia? Why is she crying every day at school? How do I convince her that River is probably going to be ok?”

“How do I convince myself??”

“What will we do if she’s not……”

When I was finally able to carve out the time and money to meet with my teacher again, I was pouring these questions out in fast succession into the space between us before I had even taken my seat on the couch across from her.

I had to talk fast because I knew what she was going to say as soon as I paused long enough to let her speak.

“Breathe.”

Oh for fuck’s sake. My kid has cancer!! AGAIN!!!

I didn’t say it but she could see it on my face.

These are important questions. I need clarity on every single one right now. And by the way I AM FUCKING BREATHING!!!

“I know. I know” she said calmly. “Ok. Now, BREATHE. Just for a moment.”

“Okay. Fine” I say out loud.

And then silently, to myself “Shut up and listen Allyson, this is why you came here today.”

I bit my tongue hard enough to wonder if there was blood, and I did the thing I was already doing while I tried to listen to her speak, even though her slow and peaceful voice was utterly infuriating.

“You’re doing great,” she said.

I tried not to roll my eyes.

“There is nothing you need to fix or figure out. Just remember to decorate the hospital room.”

She said it as if it was clearly the answer to every question keeping me up at night.

“I’m sorry, what!?” I blurt, not really trying to mask my irritation anymore.

“Decorate the hospital room. In every way you can think of.”

“And how is that going to help, exactly!?”

It sounded incredibly trite. My mind immediately started wandering to all the other, more productive things I could have been doing with that precious hour, until I finally let the breath lead me back into peace with my circumstances.

I don’t remember much else from that session but those four words played through my mind on repeat for a while after that. Decorate the Hospital Room.

And so we did.

When it was time to go back to the hospital each time, we loaded the minivan to the gills. Our own pillows and sheets and favorite blankets. Stuffed animals. Soft towels and our own soaps! (IYKYK). Pictures from happy days with friends and family. Our favorite books, CDs, and movies. Puzzles and games. Wall posters of Elsa and Anna. Mini lights aplenty. Get well cards. Electric candles. Window clings. Sun catchers. Shiny curly cues to hang from the ceiling. Holiday decorations for whatever was next, no matter how minor.

Whether it was for three nights or thirty, we did it up, every time.

Gradually, I started to see that this was more than just a distraction. It was kind of the answer to the frantic “what ifs.” Not with logic – but with presence and perspective.

It gave us something to focus on where we actually had agency. When I needed to DO something to make things better, honestly, hanging sun catchers in the window did way more good than poring over the cancer blogs ever did.

And people treated us differently. Nurses and Child Life staff lit up when they walked in. Other kids were excited to visit us. The music therapist and animal therapy handlers always remembered which bald child River was by her room. And they always had something to talk to her about. Something other than her treatment.

It gave River a reason to enjoy her days. She literally got excited each time we had to go back for inpatient treatment. Choosing what to take, what to show the nurses and the other kids this time.

They’d see River cruising down the hallway, riding her IV pole like a parade float while I pushed – the hooks dripping with sparkly decorations, jangling with keychains and Beads of Courage, the fluid bag wrapped in a feather boa. She’d be grinning in her favorite “Life is Good” shirt, excited to see everyone, and the staff would cheer as she rolled in.

The children’s hospital even had their video crew visit us and used the clip they shot in a commercial!

One day we were pacing the hallway for exercise, walking by one nearly identical room after another – grey and clinical. River waved to each kid we passed and as we were coming back around to her room, she tugged on my sweater, pulling me down to her level.

“Hey Mom, you know what?” she whispered conspiratorially “A lot of people think cancer has to be really sad. But we found out how to make it fun!”

Turns out sometimes trite can be transformational.

After a while, Decorate the Hospital Room became a mantra for me.

When we were back home again, I would eventually find myself starting to lose sleep over the tiny apartment, the bills, and how the hell to get Nadia to understand that, in the eyes of her teachers, having a sister with cancer couldn’t be a five-year excuse to refuse homework.

Then I would hear the words again. Decorate the Hospital Room.

It wasn’t instead of. I still had to figure out where to keep the medical supplies in an apartment with no closets; still had to pay the bills or deal with what happened when I didn’t; still had to meet with the teachers when Nadia continued to accept her education only in the way that worked for her (which did NOT, btw, include homework).

And I also finally hung up the stained glass panels that had been waiting in boxes for two years. And creatively re-arranged the furniture in that tiny apartment to give each of us our own semi-private space even though we didn’t have our own rooms. And went to the farmer’s market and got a bunch of houseplants. And kept warm blankets in the car for the long drives to the clinic on cold mornings.

I gradually developed the practice of tuning into the spaces I was creating for myself and my daughters, no matter the circumstances. I looked for ways to lift the vibe. Aesthetically. Emotionally. Spiritually.

In the crazy years that followed, this practice became a lifeline. Through River’s return to school and normal life, my own PTSD journey, Nadia’s gender transition, our family court nightmare, the separation from my children, the discovery that my “soulmate” was cheating on me via hookup apps, that year of living in my car, and then getting stranded on a hippy compound watching in horror as the people there descended into the madness of QAnon…. It would have been easy to break under it all. And sometimes I did. And then, I would start decorating the hospital room again.

No matter where I am, no matter how bad things get, I can always make choices, big or small, that help me increase the relief, comfort, or pleasure of the moment.

I can help Nadia dye her hair hot pink so that she can show everyone at her high school (and her dad!) that she knows who she is and isn’t asking their permission to exist as herself.

I can hang that sun catcher from my rearview mirror so that I wake up to rainbows first thing, before I even have to worry about trying to find a place to shower that day.

I can share my crazy QAnon compound stories through Substack posts and might get to touch and entertain others.

The words come back to me again and again when I need them. They almost became the title of my site.

Decorate the Hospital Room.