The Daughter Chronicles

Sunday, April 18, 2021

18 and life, you got it

It's the 18th of April, and that means it's the anniversary of Mia's accident - 18 (!!!!) years ago today, we were in the crash that damaged her brain irreparably, and changed more than one life.  As always, I like to write a post about her previous year, but I'm not sure what I'm going to say this time around.

As you might have noticed, the past year has been a bit weird. At this time last year, she hadn't been in school for about six weeks, and that continued through the end of the school year. She didn't mind, of course, because it meant more television watching for her, but I think she did start to get bored, especially because she didn't go to her summer camp, either. So she was stuck at home from March through the end of August, and while our lives continued on fairly normally, hers didn't. (Krys has worked from home for years, so nothing changed too much for her, and I was still able to go to work, because it's small enough and spaced enough that we weren't close to each other, plus we wore masks, and Norah was able to go out a little bit, even though she had the same problem of not going to physical school.) It's hard to figure out what Mia is feeling because she never expresses it, but we think she got bored.


Other than that, she was fine to a certain extent. She never stopped going to horse/swim therapy, which was nice, and they hired an occupational therapist in the late summer, so she was able to pick that up again. Her physical therapist took a little time off at the beginning of the pandemic, but then gradually worked us back into home visits, which was also nice because Mia would not have responded well to telehealth (neither would her father, but that's a whole different thing altogether!). She also got a new speech therapist in the autumn, as she had been without one for about a year. We always want her to have physical therapy more than anything else because of her difficulties with movement in a macro sense, but OT and speech are also important, and we think Mia does so much better when she has the full complement of therapy. Her OT has been working with her using her left hand more, at least to stabilize things so she can use her right hand for more micro movements, and that's been going well. Her speech therapist had to get past Mia's initial reluctance to talk to new people, but once that was accomplished, she's noticed that Mia is using more words, which is always nice. I've noticed that Mia is repeating things we say much more, so while she might not quite get what we're saying, at least she's saying things. I noticed a gecko outside her room on the wall and told her about it, and she repeated "gecko." I doubt she even knows what a gecko is (or even what a lizard is, as I told her that a gecko is a lizard), but at least she's repeating an uncommon word, and maybe some day she'll associate it with "animal" in a general sense. We shall see. So therapy is going pretty well.
She skipped the first month of school this year, despite our efforts. We tried to get her engaged in on-line school, but she was just not into it. We're not really sure if she understood that the woman on the screen was actually her teacher, live and sort-of in person. So we told her teacher that she probably wasn't going to be signing on for on-line school, and her teacher was fine with it. In September she went back to in-person school, as they decided to let the special needs kids back if they wanted to go. There were only seven of them at school, and the room they're in is quite large, so they could keep everyone apart from each other. Mia actually was fine with wearing a mask after a few days of being told she needed to, and even now, when I put her on the bus in the morning, she says "Mask!" happily until I put it on her. So she went back for a few months, and then, two weeks before Christmas break, one of the kids tested positive for COVID. They weren't going to school on Wednesdays (it was a work day, but it was for kids to visit with teachers if they needed it), and the kid came in on Thursday but not on Friday, and he got a positive test on Sunday. According to the teacher, Mia and most of the staff weren't anywhere near him, but the school still felt like they needed to shut down for Christmas. I suspect that if it hadn't been so close to Christmas, they wouldn't have shut it down, but such is life. Then, unfortunately, after Christmas break they didn't let the kids go back. I'm not sure why the special needs kids couldn't go back, but they didn't. Mia eventually went back in the middle of February, but she had had another two months of sitting around watching television. Now she's been back, and it seems like it's going well. Maybe she can make it through the rest of the year!

 
As I noted, the pandemic didn't bug her too much. She's still wildly healthy (we joke that she used up all her bad luck on one day, so now she's indestructible), and last week, she got her first vaccine shot, with the second one to follow on 1 May. She didn't react at all to the shot - I was touching her arm to see if she'd cringe or something, and she barely noticed, and she didn't act sick at all - so we're hoping the second one doesn't mess with her either. She's getting the shot on a Saturday, so if she does feel it, she'll have a day to get better before school, so we hope she won't have to miss any days. She has no idea what it is, so we don't need to explain to her why she has to keep wearing a mask after her second shot - in some ways, raising Mia is pretty easy.
Of course, the big news this year is that she turned 18, and we had to become her guardians. It was a painless process - we did a brief Zoom hearing with the judge and Mia's two lawyers, and we were approved! Yes, Mia now technically has two lawyers. She's had a lawyer for her estate for years now, and we're very happy with her. She pointed out, however, that she represent the estate, and I'm the estate's conservator, so if she represented Mia as an individual, there might be a conflict of interest. She mentioned that she knows most of the attorneys that the court would appoint, and they're all very reasonable, and the lawyer that Mia got seems quite reasonable. I had a "meeting" with her on the phone, and she said she just needed to see Mia and ask her a few questions about her state of mind. When I pointed out that Mia would not answer them, she said she has asked the questions to a person in a coma, so it was really just a formality. So she and Mia's other lawyer told the judge the current situation was fine and dandy, and we moved on. I asked her original lawyer if she'd need a lawyer forever, mainly because I think it's silly to pay someone for doing, essentially, nothing, and she said they'd ask the judge about it. Mia's new lawyer actually brought it up, suggesting it was a bit foolish to continue, and the judge said that he thought it would be a good idea for the lawyer to stay on for about a year - I assume to check out one of our annual accounting to make sure we're not doing anything hinky with Mia's money. As her accounting is almost exactly the same every year, I doubt if the lawyer will object to anything, so I hope by the end of this year, Mia won't need a personal lawyer anymore. That would be nice.
That's about it - it's been a fairly dull year, mainly because of COVID and social distancing. It's not like Mia goes a lot of places, but we've been more restricted than usual. My parents and sister came out in July because they hadn't visited in a while and they kind of wanted to experience Arizona in the summer (don't ask me why - it's really unpleasant here in July!), and they were very careful before they came and while they traveled, so we survived that. We haven't seen them since, so I imagine her grandparents miss her, even though she probably doesn't miss them. Most of the drama of this year is with Norah, who's been not enjoying on-line school at all and is happy to be back in person. Mia, as usual, is just doing her thing. She's been pulling her hair out like it's the old days, though, which is weird. Her bald spot is bigger than it's been in some time, and we're not sure why she's back to doing that (we keep telling that we're going to give her a buzzcut, like we did last summer - see below). Other than that, she's doing well - her seizures are still happening, but not too often, her weight seems fine, and she's eating a not inconsiderable amount of food, even though it's probably never going to be enough to get her g-tube out. Obviously, every year we get to spend with her is a good thing, and we're just keeping her going until she turns 21, when we'll have to decide what she can do after she's not in high school anymore. But that's a problem for a few years from now!
I always link to my updates and my post about her accident, so here they are: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, 2017, 2018, 2019, and 2020. Dang, that's a long time. We're not going away, though! Thanks for reading, everyone, and I hope you're staying safe!

2 Comments:

  • You're not going to believe this, but I've been reading your yearly updates since about 2008 or so, when I randomly stumbled across it linked from your CBR blog I think. I remember to check in at least once a year around the 18th, to read the updates. It make me feel bad that you are always carrying sadness, but at the same time, I think it's comforting to know we don't go through this struggle in life alone, and you're honest enough to share that. I think it's great you guys have been there for your daughter through thick and thin, and would continue to support her for possibly the rest of her life. My parents didn't quite disown me, but they gave up to a large extent, and I'm not that old. Anyway, keep your chin up and hang in there, we're rooting for you! (Although maybe don't let Norah read the posts about herself- yikes)

    By Anonymous Brent, at 20/4/21 3:12 AM  

  • Hi Brent! Sorry I took so long to respond to your comment! I'm very glad you read the updates - I do appreciate it! Yeah, our lives haven't quite gone the way we thought they would, but as you said, I'm not alone, and neither is my wife, so we've done pretty well, I think. I hate hearing about anyone whose parents weren't there for them, so I'm sorry about that. And hey, I thought I was being nice to Norah! :)

    Thanks again for reading!

    By Blogger Greg, at 25/4/21 11:01 AM  

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