Finding Joy in the Hospital as I Hold My Child

I’m sitting here with a faint smile across my lips. My daughter is laying across my lap, her hand cupping the perfect point of her chin. We’re resting and waiting as the medicine drip, drip, drips into her veins. Once a month we come to the hospital’s infusion center for her to get a steroid drip and IVIG blood infusion.

We get up with sleep still in our eyes and quickly fill our bellies. We load into the car in our comfy clothes and bags of books and blankets and stickers, ready to camp out at the hospital. The day starts early and wraps around dinnertime, sometimes later. The day after, she’s lethargic and cranky, experiencing a “hangover” from the infusion her body so desperately needs.

I dread these long days of being tied to an IV pole, but a part of me craves the comfort of them. The comfort that comes in knowing these are days of healing. God speaks to me more loudly as I sit in the hospital and watch the smiling children with their sunken eyes and patchy hair. Elyse gets an IV in her arm instead of needing a port in her chest, like most of the kids.

A doctor from Elyse’s hospital stay came in to do her check up. Tears collected in the bottoms of her eyes as she took in how much she’d grown — how Elyse’s once angry red skin now looks smooth and creamy.

Today a nurse gave us a Joy Jar. A jar with a rubber ducky, a soft square blanket, a light up ball and thick, bright crayons. A tall, clown-like man came in with polka dot tennis shoes and oversized glasses. He bent down over his long slender legs and played a ukulele, singing a slow folk song.

This isn’t like an amusement park where children come for their fill of happiness. But this jar of joy, and this awkwardly sweet clown are brave and beautiful reminders that this place is full of life and hope. As the kids hum along to a melancholy tune, wearing hats embroidered with the letters NEGU (never ever give up), I see a happy that is fought for — like striking a match in a dark and unfamiliar room.

I want to sit and listen to every family’s story. Stories like the three sisters who come every two days to hold their baby sister’s hand during chemo; or the grandma who brings her 3-year-old once a week; her sparse short hair is always decorated with a large pink bow. I want to light a candle for each of them like a birthday cake. I want to hold onto their wishes and blow them like dandelions. As I sit now and see the brave stories unfold, I long to be the kind of person who sings their sad songs with them, and offers jars full of joy. They teach me that joy is fought for, and hope is holding the candle of faith during a long, hard wait.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Dermatomyositis (Juvenile)

theater marquee that says create your own sunshine

My Daughter Can't Go in the Sun, So We Create Our Own

I met my close mom friend for coffee. My 2-year-old daughter was in tow, and her 18-month-old son was her debonair date. We rioted the local hipster coffee shop, our toddlers climbing on the benches and shouting, as we collected skeptical glances from the Chapman University students with their laptops, sipping macchiatos and balancing oversized [...]
black and white photo of lady gaga

Thanks to Lady Gaga, I No Longer Feel Ashamed to Say I'm in Pain

Many celebrities have been coming out about their chronic diseases and how it’s been affecting them in their daily lives. From Lady Gaga to Selena Gomez, these people have given me the courage to speak out to loved ones and acquaintances about how my body actually feels at that moment. How it’s not that people [...]
woman running a half-marathon

How I Ran a Half-Marathon With Juvenile Dermatomyositis

Editor’s note: The following is based on an individual’s experience. Please consult your doctor before beginning new exercise or training programs. At the age of 15 I was told I wouldn’t have a normal life again. At the age of 23 I ran my first half-marathon. In spring 2008, I was diagnosed with an idiopathic [...]

This Is What I Know as a Result of My Daughter's Rare Disease

I look at my friend through eyes propped open by caffeine. Her hair balanced in a messy bun atop her head like always. I was so grateful to steal a moment away from the hospital room to see her sweet, familiar face and to enjoy this ritual. We sip the same coffee blends as we [...]