Thursday, December 31, 2020

2020: Uncovering P's special needs and homeschooling

Overall, it has been a very difficult year. I almost didn't want to do my year in review because I just wanted to forget everything about it. We didn't go to the Universala Kongreso (international Esperanto convention), because it was cancelled. I was successfully a head judge for the novel category for Association for Mormon Letters (AML), the top-secret project I mentioned in the 2019 post. I've agreed to help any volunteers learn how to edit Wikipedia for AML.

P's special needs changed a lot of things. It made it so I didn't want to send A to school this year, or P back to daycare. Honestly, I'm probably high-risk for covid as well, with two bouts of pneumonia and a partially-collapsed lung in my medical history. This has made everything more difficult. 

I kept up Esperanto club meetings and my monthly movie afternoons. The highlights of my year have been the times where I socialized with other people or went somewhere outside my house. The ARCH-HIVE Discord has been a pillar of my social life, and my social media use is very high. I don't have a lot of other outlets for talking to people, which isn't something I thought I needed very much before.

I have so many projects that I want to do. I want to create an Esperanto curriculum for homeschoolers. I want to make a zine series about internet literacy. I want to finish working on the videogame with my sister. I want to make new games. I want to play weird old games and write blog posts about their design. When I think about all this content creation I have in mind though, it feels like I have no focus. Why did I start those Instagrams? What is the point of sending my writing into the void of episodic internet content feeds? I feel like I need my online writing to have more focus. On the other hand, if it's just a hobby, than what am I getting so upset about? I miss the days of just having two blogs to update, instead of having all this social media that has to link to it and image editing and all that stuff. But after watching successful artists on Instagram, having a purchasable product makes things more permanent and gives consumers a way to express their support. That's the attraction of zines to me--when writing is physical, even if it is amateurish, we value it more and take more time to look at it.

I'm not really going to make myself goals for next year, besides simply continuing homeschooling for A and special needs care for P. If I manage to do other things at the same time, that's great. If I just end up watching a bunch of Netflix and reading a few fantasy novels, that's okay too. I hope you are healthy and safe in 2021. Here's the month-by-month rundown:

January - read comics, had a lot of disturbed sleep, and played Oceans and My Little Scythe board games. I think I want to have reading comics in January be a tradition, at least for myself. I finished reading books for judging the AML novel category. Caught all the Pokemon in Pokemon Shield with the help of my sister-in-law.

February - P was in the hospital with RSV for five days. This was a bit of a turning point. I tried pumping and realized that she wasn't getting any milk out of me and stopped breastfeeding her. I also realized that she was developmentally delayed. I started worrying that she had a neurodegenerative disease (some babies with hypotonia die of this a few years after birth). We enrolled her in Early Intervention. Adam and I got to see the Little Moon album debut concert!

March - P got her helmet to make her head symmetric and I started meeting with specialists. We took a quick trip to San Diego for Adam's friend's wedding! I insisted on going to the beach a few times. I remember leaving work mid-March and taking a bunch of books home in case I could work from home and crying because I knew everything would change. It was difficult to change. I got A her own iPad and I really enjoyed playing the new Animal Crossing with two of my good friends. I started taking medicine for chronic stomach pain. We started doing home church with both sides of our family.

April - I got a rush from finding flour at the supermarket! I made psyanki for the first time, inspired by my friend Betsy's tutorial. I felt really sad when P's daycare told me they wouldn't hold her spot any longer. I woke up at 1am to look at meteors with A, but we didn't see any. I bought a double ocarina and started learning to play it. Made a bunch of bells on the stalk market (animal crossing)!

May - "A didn't do her homework until 3pm. Oh well! Who cares!" We celebrated Star Wars day and watched the original trilogy with A. I backed up files from two old computers onto our new media PC and gave away the old computers. I couldn't get StepMania (the PC version of Dance Dance Revolution) to work on our new media PC, which was disappointing. After P's swallow study, we started thickening her liquids, which helped clear up her chronic congestion. My mom started reading with A over Zoom every weekday. I started keeping my journal in Esperanto. Somewhere in here I started Esperanto and book review Instagrams. I got a cute new office chair.

June - I tried a non-diary diet to help with my stomach problems. It didn't help. We got a new purple mattress (it was incredibly heavy). A had her birthday, which included sleeping in our backyard in a tent with Adam. I got ahold of a copy of Ring Fit and started using it for exercise. P's MRI results came back unremarkable. Sometime over the summer my in-laws started coming three times a week to help watch the kids while I worked.

July - I attended a two-week long intensive Esperanto class. It was fun to meet new people and work on our Esperanto together. I got an endoscopy which came back normal. I bought the biggest and heaviest-duty swingset I could find online. I got a big PDF of all the issues of Esperanto Mormonaro and skimmed them all to find out about the history of the organization. We vacationed with my parents and siblings and their children in an airBnB in Holladay. It was so nice to visit with family, play games together and go on hikes together. I started doing some exercises in a chronic pain management app I found. I started doing some homeschool-like things with A and I enrolled her in My Tech High.

August - I decided on some curricula to try for homeschooling and we started getting into a homeschooling routine (start after lunch, at 1pm, and go until 3pm, which is tea time). I started taking P to an in-person physical therapist, and we started patching her eyes to help with their weakness. A had some dental work done. I had to move my office at work from special collections to administration. There were many times where I couldn't work because I had to go grocery shopping or take P to a specialist. Thanks to an exercise from the chronic pain app, I realized that I was feeling miserable about mothering P and decided to find a therapist. 

September - I bought some roller skates for me and A and we went out and skated on them a few times! A is still very timid about skating, but I enjoy it (it's just a lot of trouble to get out on them somehow). I started seeing a therapist for my depression. I was happy to find that Monthly Girls' Nozaki-kun goes longer than the anime and thoroughly enjoyed it... except it hasn't ended yet! We found out that P has a rare chromosome duplication that explains her hypotonia and developmental delays. I started meeting with my sister-in-law once a week, and occasionally with a fellow homeschooling mom.

October - I joined a group for parents of rare chromosome mutations. We started going to sacrament meeting online. We got sick of homegrown tomatoes (but we really enjoyed them all of September!). We went to an airBnB up the canyon for a change of pace. I enjoyed Halloween, even if we didn't have as much socializing as normal.

November - I met with a geneticist about P.'s condition but she didn't have any additional insights. She was able to order genetic testing for me and Adam though, so we can at least know for sure if the mutation was de novo (new with her) and not inherited from us. If one of us does have weird genes, that could explain my fertility problems though. Stress from work started to bleed into my personal life when another editor questioned the validity of my editing as a BYU employee, and continues to this day. We started doing more puzzles and I got started on Christmas shopping really early (hello anxiety!).

December - After having a very pleasant Thanksgiving break, I realized that I was so burnt out at work from trying to fit in work in 3-hour segments, constant interruptions from my children, and the latest complaints about my work on a forum (to be fair, it's a vocal minority). I put in my notice of resignation, but continued trying to tie up loose ends. There are still a few things I'm hoping to finish in the first two weeks of January. In homeschooling, I found some new math curricula to try (Singapore Math and Living Math) and ordered/printed the necessary materials. I made little packages to send to my siblings and siblings-in-law to make up for not being able to meet in-person this year. I also made a choose-your-own-adventure Christmas zine! It was fun but also I wish I knew a better way to do it (other than printing out the document, cutting it up, gluing it in the right format, scanning it, cleaning the scan, and then reprinting).


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