“For us, there is only the trying…”
~T.S. Eliot
.
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.

wow. such a beautiful moment at the end of a difficult day !
“To do the useful thing, to say the courageous thing, to contemplate the beautiful thing: that is enough for one man’s life.”
— T.S. Eliot
Oh, so beautiful. I feel your weariness, and your hope. Praying for you.
Oh, Jeneil, this is beautiful.
I could feel your weariness and frustration…almost as much as I could feel your reining it all in to let the love come through. The love is what stays with me.
oh dear darling
how easily I cry when I read your writing
This is a the story of a thousand days with RM… somehow, Jeneil, we DO still find joy, don’t we? … some kind of comfort in the ‘trying’…
Your baby girl is ‘trying’ only because your love gives her the strength and the will to do so.
God bless you, Mama… you’re doing it… and doing it with such grace.
xo
Beautiful, Jeneil. Just beautiful.
You are a gift, Jeneil. To your daughters and to us.
oh Jeneil. This had me in tears. She is trying so hard, you are trying so hard…we all try so hard. You handle everything with such grace and faith.
What they said. Yes. Holding you and your girls in so much love.
yes our kids try everyday. Harder then anyone should have to try. Amazing kids.
xoxoxox
She really is trying so hard. I wish it didn’t have to be so hard for all of you.
Oh Jeneil, you are truly a gift. I smiled imagining you holding Rhema close and hearing her sweet voice.
Admiring your strength and grace.
This post is almost hard to read, because I know how tired and frustrated you must feel on nights like that. But it’s so encouraging to know we’re not alone in this. Thanks for writing.
Your grace and positive spirit are an inspiration. Truly. Such a beautiful post Jeneil. I could feel the love resonate through.
Hey Jeneil, could you email me? I have a (big) question… autisticpspeaks@gmail.com. Whenever you get a spare moment. No hurry.
You and Rhema are my heros! God bless you all.
Again, I know. I do. It’s exhausting. But so glorious. A life of extremes…
I just love you.
What a beautiful sound with which to close a trying day.
There but the grace of God go I. Blessings to you and Gods grace always.
Jeneil, you’re amazing and I agree that the sound of Rhemas voice was an incredible gift.
Jess’ Mom
Your patience amazes me. Your girls have the best mom (and dad) in the whole world!
I am exhausted just reading about a relatively short time period in your day. God knows who to give to whom and no one else could have been your girls’ mommy. Bless you.
Those were some of Nigel’s earliest words, too. Our kids try so hard. And this is such a gorgeous post, my friend. I admire everything about you.
(((hugs))) what a beautiful ending to a challenging day. And what a blessing to Rhema that you recognize she IS trying.
*inhale* *exhale* You capture this so well that I can -feel- it through the screen somehow.
Each moment in your day requires so much grace, so much strength. You are a brave and beautiful mother.
In your writing you have a gift for interweaving beauty into the pain without negating either.
This just made me cry. It seems you and I have children struggling with some of the same issues. It is so hard sometimes, so hard not to get angry at God.
You sound like such an amazing mom, so patient. And thank you for reminding me that I should be focusing on all the times my son TRIES to make it to the bathroom, or TRIES a new food, even though it practically makes him gag. Sometimes keeping the right attitude is so helpful, yet I so seriously stink at that!
Jeneil, you are such a lovely writer. My heart aches and sings with yours. It’s so hard sometimes.
I know now is probably not the time, but then again, maybe it is… maybe God has stirred something inside of you as well along these lines.
Rhema’s story from a mother’s perspective is written here, but I think it needs to be written elsewhere. In a book I can hold in my hands, with pictures, with questions for further pondering.
Both of you have taught me so much. I just have a huge hunch that something’s going on here… bigger than words.
I don’t write this to put pressure on you, but just as a thought to consider and pray over with God.
Tell Rhema I’m trying too!
peace`elaine