My alarm buzzes at 4:30am as it always does. I get out of bed and paint. I start with titanium white.
Lucy wakes at 6:30. I hear her stirring in her bed through the baby monitor, but do not go to her. She can keep herself entertainined for nearly twenty minutes on a good day, but Isaac will be on the move the moment he is out of bed and he usually wakes around the same time. John should be stirring, too. I start the coffee maker and return to my easel in the corner of the dining room. I paint until I hear Lucy yelling.
Isaac is already banging around in the bathroom. I hear him brushing his teeth. He is eight going on thirty, and I often catch him reading a book over his breakfast cereal and talking to John about his plans for the day like they’re buddies heading to the salt mines. John is up, too. He kisses me good morning. We leave Isaac to his routine and go to Lucy’s room.
Lucy is in a good mood this morning. She smiles at us around the hand in her mouth. It’s probably been there all night—her fingertips are pruney again. Her diaper has leaked out, as it usually does. I strip her down and John changes her bed sheets while I slip her into a new diaper. I forget to turn off the apnea monitor first and it lets out a shrill, unpleasant beep before John reaches over and flips the switch. Before getting her dressed for the day, I give her her morning dose of Keppra for her seizures, and the new liver medicine her doctor has just started her on. I watch the medicine course through the feeding tube on her stomach, which has its good days and bad days, but offers a minute convenience for things like this.
John carries Lucy to the living room and lays her in her usual play area, careful not to tangle the wires for her feeding pump and IV nutrition bag. At fifteen years old she is five feet tall and weighs a scant seventy pounds—far from portly but getting a bit too heavy for me. Isaac has poured himself cereal and is reading his current obsession, some preteen dystopia novel with kids running from some mayhem or other on the cover. John makes himself toast.
I go back to my easel with a piece of bread hanging from my mouth and paint. Alizarin crimson on yellow ochre on burnt sienna.
It’s 7:30am. The day-time nurse is due to arrive in half an hour. Isaac kisses both me and John good-bye and heads out for the school bus. He makes sure to stop and give Lucy an extra-long hug. She grins widely and nuzzles his neck before going back to chewing on her dolls. John stops at the easel to kiss me, and give me an extra-tight squeeze. I know what he is thinking, but neither of us say it. Fifteen years of this life. It doesn’t need to be said anymore.
The nurse arrives at 8:00. She’s a slim, no-nonsense woman, the eighth nurse we’ve hired in the last decade. She helps me untook Lucy’s IV nutrition and feeding pump, flush her central line, and take her weight. Today she weighs exactly 70.6 pounds. She is growing at a snail’s pace, but growing.
The nurse plays with Lucy for an hour while I paint. Then we test her blood sugar before feeding her baby food. On a good day she’ll swallow, but today she chooses not to. She stores the pureed pees and carrots in her cheeks until she can hold no more, then lets out a half-laugh, half-gag, emptying it all over herself. We strip her down for the second time today and clean her off.
10:30am. The nurse goes along with us to Lucy’s physical therapy, then speech therapy, in the same building. Some days Lucy is in a good mood and cooperates. Today is a medium day—she does not cry when we walk into the building, but refuses to look at any of the therapy toys or engage in feeding exercises. Tomorrow is occupational therapy, and I hope it goes better than today.
Her stomach has been upset. It could be the new medicine, or it could be the new foods we’ve been trying to make her taste, or her gastroparesis has been acting up again. We change her four times throughout the morning and a blowout on the way home from therapy necessitates a thorough scrubbing of the backseat, which I manage to do in the nurse’s last hour on duty. She helps me hook Lucy’s midday feed back up before leaving. Exhausted from therapy, Lucy falls asleep soon after.
I wash the dishes, start her sheets and dirty clothes washing in the washer, organize her toys, and return to the easel. A text message dings on my phone.
Are you ready to meet this week?
I glance at my easel, then toward Lucy’s room.
I think so, I reply.
Tomorrow at 2?
I type OK, then hover my fingers over the phone a good minute before I hit SEND. Then I paint. I paint as fast as I can, as much as I can. Ultramarine blue and cadmium red and rose madder. I can still fit a little more in. I tell myself. Just a little more.
Lucy wakes at 2:30pm. I unhook her feed, change her bed sheets and clothes again, lift her onto her wheelchair—a task more difficult each day—and take her for a walk. Today she slumps to the left and has trouble controlling her head. I tighten her chest harness and point out birds and squirrels to her. She smiles when a jogger passes by with a dalmatian. After the walk, I take her back to the house and set her up in the living room strapped to her stander. I put on a movie for her as I prepare dinner and mix formula for her evening and night feeds.
John and Isaac return. Isaac tells his sister about his soccer practice and helps hook up her feeding tube, something he is as much an expert at as John or I at this point. We eat dinner, then John and I bathe Lucy. By 9 both children are in bed, Isaac in his Spiderman pajamas holding the old ratty teddy bear he denies having to his friends and Lucy hooked up to her apnea monitor and feeding pump. We mix her IV nutrition, carefully adding each supplement to the pre-filled bag with syringes, then hook that up, too. John is in bed by 10pm.
My phone dings.
Confirming for 2pm tomorrow.
Yes, I reply, come.
I continue painting, dipping my brush again and again into the thick ivory black.
My alarm goes off at 4:30am but I am already at my easel. I do not remember going to bed. Perhaps I didn’t. Or did I nod off in my seat? Did I start a new painting? I must have. I continue to paint.
John rises and comments on how early I’d gotten up. Isaac gets out of bed and does his usual thing. I pause my painting and help John get Lucy ready for the day. I look at the clock often.
How many more minutes can I paint before 2pm?
Central line, feeding tube, baby food, therapy. The nurse comes and goes. Lucy takes her nap. I paint again. I use all of my paint, all of my colors, covering the canvas thickly and brightly. The last painting stands before me a glorious mess, just as the doorbell rings.
“Just a minute,” I call. Before I answer the door, I take an extra long second to admire my final painting and wipe off my hands.
The man at the door is a familiar face. For the past five years he’d been the one to visit, twice a year like clockwork. Before that they used to send a woman with long black hair and very red nails. I like him better.
“How are you, Patricia?” He asks, as he always does, and means it.
“As well as can be,” I say. “Please come in.”
He steps into the house and lays his briefcase on our dining table, where I’ve cleared a space for him. He admires my paintings approvingly.
“You’ve improved,” he says. “Every time I come, I can see your skills grow. How long has it been?”
“Five years,” I say, though I know he is fully aware of exactly how long he’d been visiting me. “Ten total.”
“How is Lucy doing?”
“She’s doing well. The doctors say she’s making good strides towards independent sitting.”
“Good,” he says, nodding thoughtfully. “Good.”
These are all just small talk. I wait for him to get to the meat of the conversation, and after a pregnant moment, he does.
“Are you sure you want to go through with this trade, Patricia?”
I nod. “Yes. I am.”
“You have an incredible gift. Are you certain you want to give it up?”
He sighs. It’s a somewhat sad sound. “I know you think you know what you want, but I am obligated to tell you, both as a representative of our company and as a friend—which I like to think we are after all these years—that making a trade is more than just giving one thing up for another. The long-term effects of the trade is unforeseeable. You could be changing your life for the better or much worse. Do you understand?”
I nod again. He is saying nothing I haven’t heard before. I stand my ground.
“Do I have enough?” I ask. It is the only question that matters to me today. Everyday. Every time.
“Yes. You do. As of today, you have put in enough hours.”
“I would like to perform the trade.”
He nods grimly. “Alright,” he says. “Best of luck to you, my dear. Let us proceed then.”
He steps to the table and opens his briefcase.
My alarm goes off at 7am.
I roll out of my twin bed and stretch. Since finalizing my divorce nine years ago I’d taken to sleeping in much smaller beds. Something about the tight space feels cozy and, though I never admit it out loud, keeps the loneliness at bay. After all, if there’s no empty pillow next to me, there’s no missing someone to fill it.
I leisurely ready myself for work. Down the hall, my daughter is busy getting herself ready for school. I hear her blow-drying her hair, probably texting her friends as she goes. At fifteen she stands at five-foot-eight, with long brown hair down to her hips that she always complains is a pain to wash but refuses to cut. I mentally run through her schedule for this week—soccer Tuesday, volunteering with her drama club Wednesday, dinner at her best friend’s house Thursday so they can work on their science fair project, sleepover at same friend’s house Friday night, where her father will pick her up Saturday.
Which leaves me the weekend free, two days alone with the quiet house and nothing to do but drink wine and pretend I’m not depressed.
And I’m not.
Most of the time.
I lift my head from the sink. “What?”
“Where’s my purple sweater?”
“In the wash.”
“Oh.” There’s a pause. “Can I borrow your green jacket then?”
For nine years now it’s been me and my daughter Lucy. She’s a strong, sweet girl who brings life and light to everything she touches. But she’s growing up, and as she begins to pull farther and father away from me, into her own life and world and ideas, I find myself wishing, more and more, that my marriage had somehow worked out, that John and I could’ve found more in common or a stronger bond, that perhaps we should’ve had a second child before things fell apart, though whether that could’ve bridged the gap that was already growing wider between us is anyone’s guess.
“Becky’s mom is taking us to school today,” Lucy is saying as she comes down the hall, green jacket in one hand and backpack in the other. Her hair has been tied into a messy bun and she’s wearing a plaid skirt over gray tights that show off her long legs. “She’s also taking us to the college fair next week, did I tell you that? I can’t remember if I did.”
“OK. I’m leaving now.” Lucy gives me a hurried kiss and heads for the door, but as she lays her hand on the knob, she pauses. “Mom?”
I smile. “Yes, dear?”
“Are you going to be OK this weekend?”
“Of course, why wouldn’t I be?”
“It’s just . . .” she looks at me with deep brown eyes. She sees through me in a way I don’t like to admit. “Sometimes I worry you’re lonely.”
“I’m fine, dear.” Tears sting my eyes. I pretend to busy myself with the toaster. “Don’t worry about me.”
“Alright,” she says, sounding unconvinced. “Well, maybe you can try a hobby or something. Like painting. You haven’t painted in a while.”
I turn to her in confusion. “I’ve never painted, dear. I don’t even know how to hold a brush.”
“You haven’t?” Lucy shrugs. “I must be remembering wrong. I keep thinking you used to paint a lot.”
“Must be someone else you’re thinking of.”
“Must be,” she mutter, again unconvinced. “Anyway, I gotta go. Love you, mom.”
With that she’s out the door. The house echoes with the silence she leaves behind. I make myself some tea and sit at the breakfast table.
Painting . . . maybe it’s not such a bad idea.