jml's notebook
Reflecting on 2020
I had started 2020 with the theme of "habits", and especially trying to build good ones so I could incrementally improve aspects of my life. This didn't really work out.
In January, the nursery that H. had been going to since she was 8 months old closed down. The reasons were good—the woman who ran the nursery decided that juggling two small businesses, a young family, and a massive commute was just too much—but it was a blow for H. We enrolled her at a nearby kindergarten, knowing (ha!) that it would only be for six weeks.
In February, my son, A, was born at term and then spent his first five weeks in hospital. We were prepared and emotionally ready for his Down's Syndrome (T21) but seeing our little boy in an ICU, running a few degrees colder than a person should, was hard to deal with.
As hard as that was emotionally, it was also hard practically. Even then, the neonatal unit had restricted access because of seasonal flus, and because H. wasn't in nursery, only one of us could visit him at a time, and H was not allowed at all. My in-laws were in the UK for the birth, and so sometimes Jolie & I could be together with A, but not often.
Eventually, A was released, but still with an external oxygen supply. Even to this day we don't know the exact cause of his breathing problems, except maybe T21. He came home a week or two before the March lockdown, for which we are very grateful.
Normally at this point, the UK's excellent system for supporting new parents, and particularly parents of disabled children, would kick in.
Unfortunately, at this point, COVID-19 kicked in instead. The health visitors, paediatric nurses, and physiotherapists all became much less available. Every week for six months I would make my way to the hospital to pick up a serious pulse oximeter to measure A's night-time breathing, and then make my way back to return it.
In addition to his breathing problems, A also has serious reflux. Many parents struggle to get doctors to diagnose this condition, but A's ability to send a beam of vomit a clear two metres helped a lot.
While he was in hospital, in a ward full of premature babies half his size, we fed him on nasogastric tube.
For this, and a bunch of other reasons, we ended up deciding to feed him only expressed breast milk. It's hard to overstate how time consuming this is. Jolie wakes up early and goes to bed late so she has time to express. During the working week, I take on night time and early morning feeds so she has more time to sleep. A's reflux means most bottle feeds are slow and as often as not end up with him regurgitating what we have put into him. Between expressing, feeding, and naps, Jolie has maybe one or two hours a day where it's possible for her to leave the house.
Anyway, just after A came home, H's kindergarten shut down because of COVID-19, and Jolie took on homeschooling responsibilities on top of newborn care. Thanks to Memrise's generosity and flexibility, I was able to help out a bit, but because Jolie was on maternity leave anyway, it made sense for her to take things during the week, for which I'm grateful.
This made my weekends pretty challenging. Work has been good, but intense. Each week brought a variety of challenges that made demands on my intellect and emotions. Each night would bring one to three separate times where I would have to wake up and go calm A., normally for around an hour at a time. By the time the weekend came around, I needed rest, but Jolie also needed a break from the grinding monotony of constant childcare. Some weekends I rose to the challenge, others I flopped onto the couch and did the bare minimum. The last few weekends, I have been taking the kids to free Jolie up to do various projects: DIY improvements, organising Christmas things, etc.
My abiding image of these weeks is having way too much to do at work, and still spending two hours in a working day queueing at a pharmacy to get a medicine that might not be in stock.
Our weekly Zoom calls with family became bittersweet. Hardly a day passes when I don't see something in my kids that I want to show off to my parents, but they haven't even met A in person yet. It's hard not to turn green-eyed with jealously when I hear that they are looking after my nieces & nephews so my siblings can get a bit of time to themselves.
Losing church has also been a huge blow. I don't think I realised how much I depended on meeting with the church each week, singing and hearing the bible taught, particularly during hard times. Christchurch Mayfair has done a great job at keeping things going over Zoom, but it's not the same. When church has been open for attendance, we have not been allowed to sing, nor to mingle.
Summer came as a relief to us. A. finally went off his oxygen, which made it feasible for us to do things like take him outside. One of my good friends left the country but sold us his car, which together with an untethered baby made it possible for us to buy a house. We bought a small terraced house in south-east London for an OK price, locking in a very low interest rate and getting full advantage of the stamp duty holiday. For me, this marks the end of twenty years of renting. At last, I can enjoy avocado toast with a clean conscience. It also turns out that moving house with two kids is kind of difficult.
I feel like this is a lot. How about I try to bring it all together?
Lockdown revealed a few load-bearing habits for me. I had relied on my daily commute for getting exercise (a brisk walk), some time to myself, and some time outside. Walking by the Thames was particularly refreshing.
I think I could have managed either having a newborn or coping with lockdown separately, but with both together I ended up stacking on unwanted weight, and not doing any of the things I wanted for myself.
Being chronically sleep deprived is awful. It makes everything harder. I've had a few times where I have not been sleep deprived and it's been laughable how easy things are.
Lots of habits / exercise / self-discipline / energy-management advice on the internet will tell you to sort out your sleep habits first. My mental response to all of this is, "you're not wrong, you're just an asshole". Going in to 2021, I have to work on the assumption that I'll continue to be sleep deprived.
The highlights of 2020 have been the rare moments of adult company. I almost wept with gratitude in September when friends of ours volunteered to babysit the kids so Jolie & I could go on a date. For the first part of the year, I had monthly, indulgently long lunches with a friend where we talked philosophy and politics. That friend has since left the country, and I miss those lunches.
Despite being 11 months old, A isn't even close to being weaned yet, so we can expect to keep spending huge amounts of time getting food into him. More broadly, I can expect to continue to be time poor.
I am going to keep up the theme of habits though. Maybe I'll share more on that later.
Since this has more or less been a long whinge, I'm going to list a few things I'm grateful for.
- A, despite his genetic condition and a few associated health conditions, is overall healthy, and is developing at a good rate for a baby with Down's Syndrome
- A has also received good physiotherapy over Zoom calls
- A's medicine for his reflux works, and is mostly available
- H, despite being in three separate schools, two separate houses, and having to deal with a new sibling, is growing and thriving and loves her new place
- Work, despite being intense and demanding, is also fun, supportive, and rewarding
- We bought a house!
- I have a near infinite supply of hugs
- The last two weeks off have given me enough slack to get some clarity on personal priorities, and set up some things that should help me out in the coming year