“T

he house that love built.” I remember the slogan, but never really knew what a Ronald McDonald House was. Until now. Until tragedy brings me to the house in Iowa City. From the moment I walk through the doors after four days of hell—and however many more are to come—I feel that love, that grace.

The house manager takes me on a tour, although I don’t hear much of what she says. My head and heart are still at the hospital, my body ready to collapse from exhaustion. After she shows me to my room, I sit on the bed and look through the welcome bag. There are toiletries, a coloring book, a notepad and pen, and a voucher for a toy when my child leaves the hospital. It’s the blanket that makes me break, that makes me feel the love. I pull the thick soft fleece around me, curl up on the bed, and cry.

 

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I don’t know why food is love, but it is, especially in a crisis. The kitchen at the Ronald McDonald House overflows with food. Every night a group or a family comes in and makes supper for all of us who stay at the house. I’m still raw, still tear up at the slightest kindness, like someone making supper for me.

Almost everyone in the house gathers for supper. The groups become obvious from their conversations. The parents with babies in the NICU huddle around the kitchen. They speak in a language of ounces—sometimes grams—lost or gained, feeding tubes, and ventilators. They dream about discharge dates.

The parents with kids in the PICU bond over the illnesses their children fight. They sit together at tables, looking exhausted, like they’re fighting the illnesses too. In a way they are.

The kids who are there for cancer treatment sit in the dining room with their families. Masks cover their faces except when they take bites of food. If they feel well enough to eat. The little girl at the next table puts her head down, telling her mom her head hurts, that it hurts too much to eat.

I sit alone in a quiet corner of the dining room, avoid eye contact, hoping it will make me invisible. I dread the thought of someone asking about my child. What would I say, especially to the mom whose toddler is getting her fifth round of chemo?

 

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The whiteboards bring my guilt to a new level. Every door of every room has a whiteboard. “Welcome! Feel free to share your story.” That’s the message on everyone’s whiteboard when they first arrive. I read the stories as I walk down the hall.

“Michael and Anthony came into the world at 25 weeks. They’re 15 and 18 ounces, but they’re fighters.”

“Ten-year-old Bella is getting a stem cell transplant for leukemia. We’re hoping she’ll go into remission. She’s a fighter.”

“At five years old, Aidan is having his third heart surgery. He has an amazing spirit and will to live.”

The stories go on for the length of the hallway. My heart shatters for these families and for their amazing children who are fighting to survive.

I reach my room and look at my whiteboard. I spent my own terrifying days in the PICU, wondering if my daughter would survive, but even those days were spent in isolated guilt. Now she’s stable enough to move to a different unit.

None of that’s on my whiteboard. It’s blank, but I write it every day in my head: My fifteen-year-old daughter Madilyn: fighting to die.

I want to tell her story, how she also has an illness that tries to claim her life every day. But so many people don’t see it as an illness. Instead it’s a choice, a frame of mind, a flip of the switch that can be cured by an inspirational quote.

“Just get over it.” “Pull yourself up by your bootstraps.” “It’s mind over matter.” Words Madilyn and I have heard too many times. It’s that easy in the eyes of so many who haven’t lived it.

How do I write that on my whiteboard in a house where other children are just inches or ounces or one cancer treatment away from death? Maybe I should write it, because my silence only feeds the stigma.

My hand hovers by the marker attached to my whiteboard when the mom next door to me carries her bald eight-year-old girl down the hall toward their room, both exhausted from today’s treatment. I give her a nod, a quiet “hi” before I open my door.

Maybe I’ll write Madilyn’s story tomorrow.

Beth Burgmeyer is a writer who is trying to raise mental-health awareness and erase the stigma surrounding mental illness. Her creative nonfiction has appeared in Bending Genres literary journal and Mental Health Talk. She’s had several guest columns about mental health published in the Des Moines Register. Beth lives near Des Moines, Iowa with her family and a menagerie of rescue animals.