As the world practices social distancing to slow the spread of covid-19, and local governments impose limitations that affect how your day-to-day looks, it turns out I have been social distancing for a long time. I just didn’t realize my life had a name. I also never expected people who weren’t dealing with a medically complex loved one would be living a lifestyle previously known as survival mode.
No social gatherings
I haven’t been to an event, a party, a large family gathering since September, 2019 (the month of our latest cancer diagnosis). The most crowded place I have been in months is the local children’s hospital. OK, there was the one trip to the mall near Christmas, but we were in and out as fast as possible, and only for the things I couldn’t get online.
No dining out
Haven’t eaten in a restaurant in…uh…a year, probably longer. It’s too much effort to keep all four kids well-behaved. Plus we have to bring our own highchair for Ben because he can’t sit independently and the highchairs provided by restaurants do have enough support for him. Celia was always too interested in all the other people there. So basically dining out is one adult walking around with Celia and preventing her from disappearing under tables, while the other adult feeds Ben, because he can’t yet feed himself. All while Virginia and Dexter try to annoy each other as subtly as possible, so they don’t get caught. Adult meals might as well just be ordered to go.
Eating take out is about as good as it gets for us.
No church services
I haven’t been to church more than twice since September. Celia stopped walking, so that pretty much means you need the double stroller to get everyone inside. The double stroller blocks the ends of 2.5 pews. You have to sit on the end, so you can leave Ben in the stroller, which is slightly uncomfortable for him, but the other option is for him to lie on the pew and hope he doesn’t wiggle off. Celia wants to sit on my lap at all times. About 75 percent of the children will be bored or start to complain at the same time – make no mistake, all four will complain about something, it’s just that three will do it at the same time. The twins will get restless because they are hungry or need naps, or both.
Add in Celia’s new normal was to vomit at a moment’s notice, which really made me think twice about taking her anywhere. I didn’t want to be associated with spraying people with projectile partially digested Pediasure, and selfishly I don’t like being covered in my child’s vomit without easy access to a change of clothes and a shower.
Lastly, there were times other parishioners would cough and I would worry, was that a my-throat-is-dry-cough? Is it allergies? Is it a cold? What if it’s the flu? How neutropenic is she right now (read: how much immune system does she actually have at this moment). Staying home was better for my sanity. And any time spent together as a family at home was precious.
Well, I quit my job three years ago to stay home with my children because daycare for four was too expensive and two of the children couldn’t stay away from the hospital – still can’t. Since that time, I have not spent a single day or night alone. Seriously, I have been an on-duty parent to at least one child since 2016. No one ever takes more than three of them for the night, most often, it’s only the two older kids.
Use this time to rewatch a favorite show
Disney is on almost 24 hours a day at this point. When Celia is inpatient, she gets her way, because she is in the hospital. She has final say over what is on. If she sees a tablet, she requires the streaming service too. Additionally waking up in a hospital bed with familiar cartoons is more comforting that waking up in a dark hospital room with a nurse taking vital signs.
When she is home, she is required to share screen time with siblings. I actually get more control of programing when home, because she sleeps more there. But there still is a considerable amount of children’s programming.
Judge me if you want, but I don’t care. She has cancer. Chemo makes her feel terrible. She’s rarely home. Her life is unpredictable. She gets gets poked with needles all the time, including at home by her mother. And when she gets really upset, she vomits. She can learn to be patient and be a considerate person later. She’s only 3.
Read more books
Does Facebook count? Last time I read an actual book was when I spent a week with my in-laws, two summers ago. With at least two adults on-duty, I had the luxury of mentally checking out and checking into a book. And I felt guilty then. Eventually I’ll have time for myself. Until then, short reading – blogs, news articles, social media – is about what I have the capacity for.
Limit outings to the essentials
Wait. You mean people don’t regularly only get out of their homes to visit the grocery store, the pharmacy, and attend medical appointments? Color me impressed. That is not my life, but it sounds luxorious. Most days my routine looks like this:
- Wake up Virginia and Dexter
- Provide breakfast and pack lunches
- Drop them off at school
- Return home, get Ben dressed
- Feed him breakfast and pack a snack
- Drop off at preschool (more recently this has transitioned to bus pick up/drop off and it’s amazing).
- Give a Celia her morning meds.
- Get dressed, her and me. Yes, this means most school drop offs happen with me still wearing yesterday’s leggings.
- Start her feeding pump.
- Clean some things? Dishes and laundry are the priorities.
- What do we have today?* It’s usually oncology, which is multiple hours. One hour up, two to four hours in the actual clinic, and another hour back. Timing depends on what she needs and how busy they are.
- Feed children something for dinner
- Police the typical chaos
- Send them off to bed
- Give Celia her evening meds
- Fall asleep while getting Celia to sleep because she only sleeps in your bed and doesn’t allow you to leave.
*Some days Ben has PT and OT after preschool. Some days we have no plans. On those days I aspire to pick up all the toys, vacuum, mop, clean the powder room, but some days all I can manage is to sit, breathe, enjoy the comfort of my own home because I probably won’t be there long. My current record is 32 consecutive nights in my own bed since Sept. 10.
Honestly, social distancing doesn’t mean much more than we (OK my husband and mother-in-law, because I basically live at the children’s hospital) are homeschooling the children. And I no longer have guilt over not signing anyone up for extra activities because all sports are suspended, and I assume scouts also is on hiatus.
You can do this
For those of you who are new to lying low, breathe. Learn to accept the uncertainty. Learn to be OK with not knowing how things will pan out. Basically, learn to be very comfortable with who you are and the people with whom you share a living space. You’ll gradually lower your standards and expectations. You’ll control what you can when you can, because the lack of control can be all consuming. One day, this will all be a memory.
In the mean time, use social media to stay connected with friend and family and the world around you. Thankfully this all is happening in a digital age, so being alone, doesn’t have to feel so alone. Join an online community. Make virtual plans – a video call, an online game with friends. The possibilities are endless.
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