I Don’t Know How She Navigates the Long Haul of Freelancing, Caregiving, and Disability

Swinging is followed by jumping (I hold N for balance while she jumps and squeals with joy) and a shower. N puts on pajamas and dries her hair while I pack clothes, bedding, toiletries (wipes, gloves, overnight diapers), and make a list of stuff to pack tomorrow. When she’s done, she “cleans” her room (I throw all her toys on top of her, and she sorts them into buckets).

Downstairs, B is scooping pureed food into sectioned bowls. We hope N will eat whatever they’re serving at Green Cottage, but we’re also sending backup. Head punching and spoon bending does not a great impression make.

I catch a free moment before N’s evening meal, which she calls “lunch/dinner,” so I catch up on news and schedule a float therapy session. Floating in dark, silent, salty water where no one can reach me settles my nervous system like nothing else can!

N is in bed by 9:30 p.m. I flop down in the living room with B and put up my buzzy legs. We pretend to watch some show we’ve seen before, but we’re both on our computers. Later, I take N to the bathroom, climb into bed, and indulge in a little Ancestry.com. When I doze off my iPad smacks me in the head.

Tuesday

N is dressed and the car is packed with wheelchair, walker, communication book, pureed meals, clothing, bedding, etc., by 10:30 a.m. Green cottage is part of the nonprofit B works with, so he’s taking her up and staying over.

After an 11:00 a.m. Zoom meeting, I’m off to float therapy. Driving home, I stop to pick up a prescription (it’s not ready) and forget to mail the tax forms (which are next to me in the passenger seat), but I manage to pick up a sandwich to eat while completing the online portion of the Red Cross re-certification required for my LNA license; the in-person portion is next week. The rest of the day I work and read two plays for a Monday meeting.

After dinner, I sit in the living room, both the television and my computer on, doing relatively mindless tasks and telling myself I’m relaxing.

Wednesday

In the morning, I make chicken, some pureed for N and some not. We have a system: B makes N’s veggies. Preparing food a few days ahead makes life easier. Then I’m off to coffee with a friend. I’m also board vice president for the actor training program he created in the state prison, so there’s business to talk about too. But that’s cool.

I’m driving home when B calls. Things are going great, N’s staying another night. Huzzah! A promising omen for the future, and more time to get things done!

A work Zoom is followed by a board Zoom. I book travel for an upcoming gig and add a few extra days to the trip to see my mom, get her taxes organized and to the accountant, and visit my sister.

It’s nearly 5:00 p.m., so I focus on sending next month’s LNA hours and a video content schedule to the people that need them. I don’t want to cook or clean, so I treat myself to DoorDash (a rarity!) and am surprised to discover there is a great Halal place two miles away. I eat while reading another play for my Monday meeting.

Thursday

I finally get to the post office and pickup my prescription.

B and I meet on Zoom with a new potential service coordinator for N. I get in a few hours of work before B and N return. He unloads the car, then has a Zoom meeting. I take N out for a short walk. Mom walks are, by necessity, short.

I sort mail while N spins in her swing. After jumping, it’s up two flights of stairs, which N manages on her own using “N Parkour.” It’s slow, but she’s proud of herself and wants me to “proud clap” for her. I do. She “cleans” her room while I unpack her bags; then, it’s dinner, bathroom, glider chair (with “chair zuzzies” and a vibrating pillow behind her back), bedtime around 10:00 p.m., and a second bathroom trip at 11:00 p.m.

Friday

I caffeinate and do New York Times puzzles before getting N up. She is working on turning off her alarm clock and going to the bathroom with the walker by herself. At this point, the challenge isn’t the tasks themselves, but rather understanding that she has the agency accomplish these things without me. We’re making progress. Very slow progress.

Today’s routine is fairly typical: N has yoga with Mom, stroller with Dad, breakfast (even though it’s 1:00 p.m.) with Mom, treadmill with Dad, swing time/jumping with Mom. B and I use gaps to rest, wash dishes, do laundry, etc. N insists on wearing her “swing gloves” while walking upstairs, but they’re slippery, so she wants to hold my hand. It’s a bad idea, but for some reason I agree and tweak my shoulder when she slips and yanks my arm.

Later, when N is “cleaning” her room, I find B making and pureeing pizza. Saturday is pizza night. I inform B it’s only Friday, and we both have a good laugh.

Dinner runs late, setting me up for a late second potty visit where I discover N’s period has started. Use your imagination. Or don’t. If you know, you know.

Saturday

It’s snowing. This means no stroller, which means there will be negotiating. N is a master negotiator. She agrees to forego stroller time in exchange for swinging before breakfast and again after shopping with B (he carts her around a store in her wheelchair, “zuzzies” noisily jammed behind her ears, evoking confused looks from nearby shoppers). While they are out, N wants me to make the sleeves of her bumpy purple gloves longer, so they go past her elbows. I try to do this during breakfast so I can work while they’re out.

After second swing time, N works at her brailler and “cleans” her room. Then it’s dinner, bathroom, pajamas, glider chair, bedtime. My job is to get her from activity to activity, do “proud claps” and hugs as directed, revisit lists of things we’ve done and will do, and, when she farts, agree to blame it on her toys. Trying to work while bouncing from thing to thing makes me tense and grumpy, so I focus on being present. The days when I can do this are the best days.

Sunday

We wake up to the news of an impending snowstorm. Perkins announces the school and residences will be closed Monday (so N will be home until Tuesday morning). Stroller time is replaced with another shopping trip. I call the Red Cross to reschedule the class I won’t make at 9:30 Tuesday morning.

After shopping, N, who never gets sick, has a fever. Despite being opposed to rest, she is tired and agrees to quiet time activities. Once she’s in bed, we sort out how we’ll juggle Monday work and meetings and prepare for the possibility that, if she is sick tomorrow, she’ll be home Tuesday as well.

Reflections

Spotlight on a Week Without Art:

This was a week in which I did not practice my own art. That’s fine. There was a time when weeks like this devastated me. I’ve had plenty of crying jags on the bathroom floor, watching N smack herself in the head and rip shirts with her teeth when I’m in a hurry, or trying to make use of the one block of time I reserved for writing. I think all caregivers have moments like this.

I know measuring my value as an artist in terms of my ability to put aside, ignore, suppress, or attempt to deny myself the gift of being present is cruel (and antithetical to the artistic process). Still, it’s a struggle. I have to consciously remind myself not let one week, one month, even one year define me. This is, perhaps, not great career advice, but it’s healthier for me as an artist and a human.

Sometimes when I start spiraling into a multitasking frenzy N will sign: “Monkey, calm down.” This is a line from a book we got hoping it would provide N with alternatives to punching herself in the head, which is sometimes an apt metaphor for what I’m doing. In these moments, the absurdity of life, of the things others expect from me, of the things I expect from myself, reveal themselves clearly. And I laugh. Which is better than crying. N’s a great teacher, if I can hold still long enough to listen.