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 always do — mine a strong Americano lightened by a splash of half and half, her fingers wrap around a non-fat latte. So much the same that it feels comforting, yet surreal against my stark new reality.

I got the call confirming the diagnosis we dreaded the afternoon of Ash Wednesday.

“The skin biopsy and blood results confirm she has Juvenile Dermatomyositis,” Dr. Milar said simply.

My 18-month-old baby girl had a rare disease attacking her body that I could barely pronounce. But more startling than her diagnosis was how quickly the disease overtook her. One week later, my once active toddler couldn’t walk. In a whirlwind, I had rushed her to the emergency room where they had admitted her to begin treatment.

 

Two days and two long nights later, here I was, sitting in this hospital visitor room, sipping coffee with one of my best friends. She looked at me, waiting for me to begin — for me to say something that could help her understand. Both our kids were close in age, we had shared so much life together. But our easy conversation was halting as I struggled to distill all I was feeling into a coherent story.

The words started like a trickle. Then came more easily, until they poured out of me like a song.

“Rachel, this is what I know:

I know my heart aches to watch my daughter crumple to the ground, her legs too weak to skip, or twirl, or run till she can’t catch her breath.

I know a mother shouldn’t have to sing lullabies to calm her baby as she twists and wrestles to be free, tears pooling in the corners of her eyes as she’s poked again and again.

I know the mom in the crowded waiting room of the ER — with her head bowed over the sleeping pile of a sick child — belongs at home with her feet propped on a table, her son tucked in his Thomas Train comforter in his bed.

I know I’m not alone in suffering. I know we can only drink life in a bittersweet cocktail of overflowing joy and aching emptiness.

But I know so much more.

I know I am blessed more than my words can ever express.

I know a daddy who pushes his baby around the hospital floors for hours on end, who wears an ash cross on his forehead, his eyes filled with tears, but his heart full of unwavering loyalty and trust. A husband who stays all night on one half of a twin cot because he knows his wife needs him.

I know a doctor run ragged with slumped shoulders, walking home, used up and tired, whose hands have healed more lives than faces he can remember.

I know the warm blanket of peace wrapped around me amidst the chorus of children’s cries and the dull ache of fear and uncertainty.

I know more food than my belly can hold, more love and prayers whispered than I can imagine, more kindness than I can repay.

I know when we’re broken, the love that binds us back together makes us more complicated, and more beautiful.

I know a little girl who can’t walk, but believes she can “fly” through the trees in a green plastic swing.

I know a girl who will walk, and skip and run again, with a life story that sings like a love song.

I know beauty and grace can exist even in the corner of a hospital room as I’m lulled to sleep by the hum of IV monitors and the snores of my little girl.”

The tears were falling uncontrollably now. I didn’t bother to wipe them from my face. She was holding me. Her arms wrapped tightly around my neck reminded me I wasn’t alone, and I knew healing was beginning.

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