Looking to the New Year: Bragging about survival

One of my favorite authors, Morgan Daimler, recently asked her followers on social media to brag about something accomplished in 2022 (and she specifically mentioned that survival can count).

She’s pretty popular and got a lot of responses, so I didn’t read all of them. But I read a dozen or so, which were all about people going back to graduate school, writing books and publishing—all things I wish I was doing, all things I “should” be doing. I was tempted to just pass on by. Many things on social media are just not for me, and I generally only grab a minute to read any of it when I wake up at 5:45 am and try to force my exhausted body out of bed early enough to do meditation before kid-chaos ensues.

Creative commons image by eric wustonhagen from flickr.com

But then I thought this was kind of a meditation exercise anyway. Morgan definitely phrased it in an open and non-judge-y way. I took a moment to calm my mind in the predawn darkness and imagined what I could possibly brag about.

My first thought was, “Well, I managed to continue my spiritual practice every day, no matter what, come screaming kids, Covid, ice storms or any other chaos.” I’ve done it for about seven years now, but I usually miss at least one day due to illness and I think I had a perfect record in 2022. That means that despite my momentary procrastination on Morgan’s post, I did manage to kick myself out of bed early enough every single morning.

Similarly, “I didn’t miss any of my full moon blog posts.”

Dear reader, you hopefully have no idea how nip-and-tuck that often was. Writers, like all creators, are kind of supposed to make it look easy, but I never finished one of these when it wasn’t the last minute and I was propping my eyes open, trying to find typos. Even though that’s a far cry from publishing another book, in my current state, I do actually feel like patting myself on the back.

Then, once my brain was thinking a bit more constructively, I remembered a bigger one, “Oh yeah, I fought back a lethal chronic illness to officially 'healthy’ levels by maintaining a very restrictive diet that requires constantly cooking from scratch.”

That would be the diabetes I was diagnosed with at the end of 2021. I had an A1C of 6.9 at the time. 6.5 is officially diabetic and many many people have far worse stats, but diabetes is a huge killer, shortening lifespans and decimating quality of life. So, the fact that I fought it back to an A1C of less than 5.5, which starts the “pre-diabetic” range, without the use of any drugs, is no small thing. Granted, some experts will tell you that nothing above a 5.0 is “healthy” and I will never be “cured” because I will never be able to safely go off of this restrictive diet, but I cut down a whole host of horrible risk factor statistics nonetheless.

That may not exactly sound similar to graduate school or publishing a book, but I’m betting the research I did around it was post-graduate level. And the workload as well as the odds against me were definitely in line with publishing.

So far, I had been shying away from the part of my life that has been the most overwhelming and distressing this year—my kids’ neurodevelopmental health problems. That is, of course, what makes any of those other things at all remarkable. Most years, I could complete a monthly blog post without breaking a sweat (or propping my eyes open). Kicking diabetes in the tush might have presented a challenge any time, but it’s the 2-3 hours every single day that I have to devote to cooking specialized and separate meals that is the real kicker with that. And that’s only a huge burden because of what the other 21-22 hours of the day are like.

So, I gritted my teeth while I admitted that I also had to brag about “survival” as Morgan had suggested. This is because I am something of an unreasonable perfectionist. I am fine with other people being proud of surviving difficult circumstances, but that isn’t generally “good enough” for my ego, I’m ashamed to say. I know it’s silly and Morgan is absolutely correct. I should be able to be proud of surviving, but I’m honest enough to admit that that was a struggle.

Nonetheless, “I survived parenting two adopted young adolescents with FASD.”

After a moment’s thought, “And I got them both approved for developmental disability services in one year.”

I know for a fact that no one who hasn’t done this has any realistic way to know what the first part of that entails, but I also guarantee that anyone reading the second bit who has actually parented kids with FASD likely needs to close their mouth, which is now gaping in shock if they kept reading at all.

I’ve written about the specifics of FASD before and I’m not going to bog down another post with it, but suffice it to say, that I still maintain working in a war zone was significantly easier and less stressful than parenting kids with this particular neurodevelopmental disability.

As for getting those kids into “Developmental Disability Services” in the US, it is a huge bureaucratic process requiring multiple medical and psychological evaluations, lengthy assessments, multiple thick packets of tiny-print forms and months of waiting and then hurrying, waiting and hurrying at just the right moment. To get one done felt like a mammoth task. The second one got approval just days before the new year, meaning that I accomplished both in one year from medical exam to stamped eligibility letter. Several professionals mentioned that they’ve never seen it done faster.

The reason it’s a big deal is because those services will finally provide the specialized medical, psychological and educational help we left the Czech Republic and came to the US for. Finally, one kid is getting and the other will soon get real individualized, human support, including someone to guide them through understanding their neuro-diversity and learning to work with their strengths rather than constantly driving themselves (and their families) into the ground just battling their disabilities.

It is not expected to be “easy” by any stretch of the imagination from here on out. But it just might be sustainable over the long-term, if all the pieces I’m now juggling will just fall nicely into place.

Oh, and at the end, I remembered another little detail: “I moved out of a basement to a nice above-ground abode, in the midst of all the other stuff.” That, naturally, involved a lot more than just boxes, boxes and more boxes. It also involved a lot of bureaucracy since I had to gather the finances to make the move possible as well.

I put it all together and finally I did feel a little spark of pride for the first time in far too long. In the kind of life I’m living, the life of a professional medical patient and mom of patients, it is very hard to feel purpose or progress or anything but a running battle where you’re always losing ground. There were many things lost, despite those accomplishments, far too many and too depressing to list here, but still, it was a good exercise to look back and consider what had been accomplished in one year.

I encourage you to try this meditation as well, in some calm, quiet moment of this new year. What can you brag about? Don’t forget to brag about surviving the things that were truly awful. Don’t forget about fending off illness or building good habits or mastering endlessly nit-picky systems.

The flip side of that is then looking forward to the new year with some modicum of hope, strategic planning and intention. Most of the things in my world are still far too uncertain and half-baked to allow for me to plan ahead. I have filled out the initial application for a guide dog for the blind, so that may be an accomplishment possible in 2023 if I’m exceedingly lucky.

I’ve also been seriously thinking about graduate school but the important deadlines are upon me and I am not even remotely ready to apply. Nor do I know if my more-than-full-time job parenting kids with developmental disabilities will have eased due to the promised respite services enough by next summer for me to actually go back to school if I did get in and get the one and only scholarship available.

As a result, it likely won’t be in 2023 that I go to graduate school to become a writing instructor. But if not now, maybe the next year. For now, I am taking one step toward preparing. Many bloggers set up Patreon accounts for readers to support their writing, since writers are so often broke. Patreon contributions, however, will actually undermine a person with a disability due to social security restrictions. Instead, I have set up what is called an Able Account. This is a specialized account that will go toward allowing me to go to graduate school.

A few people have asked me how they can help out in these difficult times, so here at last is that way. Go to my Able Account page and follow the instructions. Even $5 is a step toward my education goals and it also helps me to be able to write more for you. All of my readers have my deepest thanks, whether you can contribute this way or not. If you can though, it goes a long way toward the day when I will be able to write more books.

I wish you the promise of unknown possibilities in the new year!