My family and my brother’s family occupy space and time differently than we did before Battens disease gripped us.

We flow from tears to the mundane and back, over and over again. Stephen King could not have imagined a more horrible disease, one that ravages children’s bodies and minds for years before killing them in their teens.

“I’m grieving Catie’s death already,” my sister-in-law, Cathy, said while she took the boiled potatoes out of the pot last Christmas. She sobs. I hug her. She wipes her eyes with her red and green checkered apron.

The disease has blinded and slowed her oldest daughter, Catie. And her youngest daughter, beautiful Annie, was diagnosed with the monster three months ago.

“Do you think we should mash the potatoes by hand or with the electric mixer?” she asks. “Which is the best way?”

I dance with Catie after dinner. I twirl her and she’s smiling and it’s so, so bittersweet. I sneak to a dark corner to hide my tears. When I return, Catie is yelling at my 9-year old son, convinced that he’s stolen her favorite purple purse.

She’s shoving Nick. He stands glued to the carpet, clueless how to respond.

I take his hand and lead him to the backyard, away from Catie. My hero, my loving sister-in-law, is at Nick’s side, explaining that Catie has tantrums and yells at her sisters all the time. That he should not take it personal.

Cathy and I return to the living room, start picking up the piles of discarded wrapping paper. We flow from laughter to tears and from denial to horror. From raw pain to numbness.

We never reach acceptance.

By Marianne Lonsdale

Labels: Marianne Lonsdale

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