“For us, there is only the trying…”
In the late afternoon, as soon as we get home from work and school, she makes a mess in the bathroom.
My back was turned for a minute, my coat still on, trying to find something for dinner.
But now the walls, the sink, the rug, her hands, her hair are covered in poo.
Carrying her up the stairs without soiling anything else is… tricky.
I tell a hungry Hope she’ll have to wait a little longer for dinner. “How do you say HUNGRY in sign language?” she calls out to me.
She’s in the tub, and I think about the mess downstairs. She’d gone into the bathroom at least, and that was something. “You tried, Rhema girl,” I tell her. “I know you tried.”
I scrub her clean. Throw rug in washer. Wash walls. Cook dinner.
She eats. At the age of 3, they diagnosed her with a feeding disorder and I took it personally. She no longer has feeding issues. But I’m always so relieved when she eats.
“Use your spoon.”
She ignores me. I hand-over-hand her, guiding the pasta shapes onto her spoon. But she takes her free hand and scoops the food off the spoon and into her mouth.
Hope needs more milk and more ketchup and her tummy hurts and ‘how do you spell spaghetti?’ and I still haven’t changed and I’ve got to start dinner for the husband. No time to sit with Rhema and help her use her spoon.
She wipes spaghetti sauce into her freshly washed hair.
“Napkin! Use the napkin!”
She is startled by my raised voice. But she splays her fingers across the napkin; it seems to take all her concentration.
Then she goes back to eating and back to not using her spoon and back to wiping her hands in her hair.
Back upstairs we go. I wash her clean. She did use the spoon. Once. Kind of. She did use the napkin. Once. Kind of. And that’s something. “You tried, Rhema girl,” I tell her gently. “I know you tried.”
The rest of the evening is a struggle. Clothes on. Clothes off. She tries to eat Q-tips out of the trash can. She breaks a light bulb and doesn’t seem to notice her bloody fingers. Lots of non-compliance and lots of distressed humming and it’s finally bed time. She’s a heap on the floor and won’t get up.
“Come on, babe. Time for bed.”
She just won’t come. I try to lift her off the floor, but she’s too heavy for me now.
And my heart and soul are weary tonight.
I leave her and escape to the bathroom.
I briefly imagine myself mother to a neurotypical Rhema.
Why, God, why? Why, why, why?
I give myself permission to grieve for a minute.
(Because leaving her unattended for more than a minute is asking for trouble.)
She’s still on the floor. It’s been a long day with so many demands and she’s had about enough of it all.
I sit down next to her and haul her into my lap.
Her forehead touches mine, and I tuck a ringlet behind her ear. She’s growing. Gosh, she’s growing so beautiful. Her big front tooth is loose and sticking out and I’m not ready for her to turn into a snaga-toothed 7-year old. I savor her nearness.
We know God’s much-needed grace, and our spirits calm.
“Hi,” I say.
“Hi, hi, hi,” she says mechanically.
It’s the first real conversation we’ve had all day, and I love the sound of her sweet voice.
“I love you,” I remind her.
“I luh yew, I luh yew,” she repeats quickly.
It’s been a long time since I’ve heard that, and it’s just a whisper and it’s still not clear.
But I know she tried.
And oh yes, it’s something.