The Daughter Chronicles

Sunday, August 30, 2020

On becoming a parent of an 18-year-old

On 30 August 2002, we became parents for the first time.  Mia was born around 8 p.m. on a Friday, and naturally, our world changed instantly.  I respect people who choose not to be parents, but it really is true that it's one of those things that people who aren't parents can't really understand.  Mia was a fairly typical kid for seven months, and while it was hard work being parents, it was also very enjoyable.  We had been married for eight years before we decided to have kids, and waiting, I think, helped us with being parents, as we were older and more mature and less freaked out by things that came our way.

These three are pre-accident photos

Obviously, this is a post-accident photo

Then, of course, we went through another change and became the parents of a special needs kid.  In much the same way non-parents can't imagine what parents go through, I imagine it's hard for parents of typical kids to understand what it's like being the parent of a special needs kid.  I'm not saying it's easier for anyone, just different.  Mia is totally dependent on us and always will be, and it's tough to come to terms with that when your child is so young.  You think a lot about getting her to a point where maybe she won't be totally dependent on you, but as the years pass, it becomes less and less likely until one day you just accept it.  There's also the underlying sadness in your lives.  I've said it before and I'll say it again: I'm sad every single day.  Those people who know me personally might think that's strange - I've always been optimistic, and I don't dwell on depressing things, and I have a good sense of humor about life.  But humans are complex creatures, and while I'm generally happy about my life and where we all are, there's a Mia-sized hole of sadness in the middle of it.  I can't think of her and not be a bit sad.  Occasionally it's more than a "bit," but it's still always there.  I imagine parents of typical kids don't feel that way.  I know I don't with Norah.

Mia herself is a delightful person.  She can be a pain in the ass, sure, and she still thinks scratching or clawing at her parents is an acceptable to way to show her displeasure with things, but the accident did not take away her charming personality, her sense of humor, and her intelligence.  We temper everything with the knowledge that her brain is extremely damaged, but we can see the way she uses her brain and wonder how well she'd be doing in school if not for the accident, because she has a terrific long-term memory and she can learn things, even if takes longer for her than for most kids.  She's usually very friendly, and while she's not too talkative, she enjoys talking as long as it's focused on her (like most kids, she's very selfish, and unlike most kids, she probably won't grow out of it).  In other words, a nice kid.

When she was injured, we were at our low point.  So many couples with special needs kids end up splitting up because of the pressure, but we were never anywhere near that point (again, I think waiting for several years to have kids helped us, because we weren't navigating a new marriage and a new child at the same time).  However, I can see why it happens, because dealing with Mia put everything about us on the back burner for a while, and some people just can't handle that.  There's also the pressure simply to be more of a caretaker than you already are, and some people don't want that, either.  The year of her accident, 2003, is an annus horribilis for us, for more reason than just Mia's accident.  The doctors weren't sure if she would survive the operation, and then she got water on the brain, so she now has a shunt in her body that will probably be there until she dies (she doesn't need it anymore, but the doctor would need to cut her head open to take it out, so it's best to leave it there).  Then we had to find therapists and figure out what we were going to do about our jobs.  Then we had to deal with suing the company of the guy that hit us, which we ended up not doing (we took the insurance settlement, but our lawyer advised against suing, because he noted that we'd get a huge settlement, the company would declare bankruptcy, we'd end up getting just the insurance money anyway, but his fees would be higher because he'd have to go to court).  We sent Mia back to pre-school in the fall, which worked for a year, but then she was too big for the baby room and not advanced enough for the toddler room, so I had to quit working to take care of her (I was a teacher, and Krys made twice as much money as I did).  It was a huge change, naturally, and we were worried the entire time.  Being a parent is stressful enough, but the added stress of raising a special needs kid is palpable.

As Mia has grown, we've adjusted, of course.  Her therapies help quite a bit, her feeding tube means that she's not skeletal like she was several years ago, when she just was not eating anything.  She's undersized, of course - she doesn't weigh 100 pounds - but she's healthy.  Interestingly enough, she seems indestructible - she never gets sick, and while we know her muscles are tighter than they should be, it doesn't seem to bother her too much (it does occasionally, but she never admits it).  We stretch her out when we can, as do her therapists, and that helps, but it's still remarkable how healthy she is.  We're worried about the coronavirus, of course, but not as much as some of the parents of special needs kids I know, whose children have very fragile immune systems.  If we're thankful for anything, it's that her injuries do not get compounded by ancillary health problems, which we know happens to many kids with autism or other genetic issues.  We've also had to adjust to the total dependence, as I noted above.  Mia will never live on her own, and we probably will not ever put her in a group home.  She has a few years of school left, so we have some time to decide what's going to happen once she's out, but more than likely we'll try to find programs that offer things to do during the day, while we keep her at night.  As long as we can move her around, we'll be fine.  Part of the sadness in our lives is knowing that she can never really do anything, but that's just something else we've accepted.

We're in the process of becoming her guardian, as the laws change for people once they turn 18.  We haven't quite finished it yet (the courts are backed up, as you might imagine), but our lawyer assures it it will be a formality, as Mia is clearly not able to live on her own.  But again, this age is a watershed, and today is both a happy and sad day, as in another timeline, Mia would be in college already and we'd be celebrating her adulthood.  I often think about a different timeline in which Mia was not in her accident.  It's a weird thought exercise, because I've been able to do a lot of interesting things due to not having to work.  I've met some wonderful people - either therapists, or teachers, or other parents - that I know because I'm part of that community.  And yet I always tell them that I wish I had never met them.  They understand completely.  There is almost nothing good that has come from the last 17 1/2 years that I wouldn't trade for a healthy child (I say "almost" because I'm not sure we'd have Norah if Mia hadn't been injured).  We always make sad jokes about finding a genie and getting three wishes, because both Krys and I have only one wish, and it's the same one.  We've had a good life, both as a couple and as parents, but there's still that layer of sadness running through it.

Here she is, the newly-minted 18-year-old!  I interrupted Beauty and the Beast, so she wasn't too happy, but I got her to smile. She needs her hair combed, but that will wait until tomorrow, when she goes back to school!

So Mia is 18.  She's a wonderful person, she's funny, she's smart, she's annoying, she's demanding, and she's super.  She's certainly not what we expected from a child, but she's made us better parents, I think, and I hope better people (Krys was great already, so maybe I'm just speaking for myself).  She's a bigger part of our lives than most children, and that's not going to change.  We just try to be worthy of her, because she deserves the best.

Wednesday, August 12, 2020

Life in the time of COVID

Many people, I know, have been going through the annoyance of the coronavirus and the way it disrupts lives if you're lucky enough not to get it. But those people don't write my blog, so I thought I'd tell you how the past few months have gone! Back in March, the kids were on Spring Break when things got really dire, so they just never went back. This didn't bother Mia all that much, because it just meant she got to watch more television, but Norah had to adjust. We had an old laptop that she had used in the past, and she made it work, despite the computer's age and the fact that she (Norah, that is) had downloaded some junk on it over the years. Why does she need four browsers? Beats me, she just does!!!! So she was able to keep on schedule and do the work the teachers assigned, and she ended up doing a bit better than when she was going to school. I still don't know if the work was easier because teachers weren't ready for the change or if she was able to concentrate better or if she was just getting in a groove after having to adjust to high school, but I guess we'll find out this semester! She missed her friends, but of course, it was early in the pandemic, so she didn't miss them too much. That would change ...

Krys has worked from home for years, so nothing really changed with her ... except she got busier. The mortgage industry has exploded over the past few months, which seems weird, but she's working more than ever, and her company is paying big bonuses to them because they want to keep who they have, as all mortgage companies are looking to poach good workers. So she's been busy. I was deemed an essential worker, so nothing changed too much for me, either. In March 2019 I decided to start working at Dream Dinners - we have been customers for over a decade, and they needed part-time work, and I spoke to the boss and made sure I could work no later than about 2.15, because I needed to get Mia off the bus, and once that was agreed upon, I started working there. It's minimum wage, but it's a bit of extra money, and the big thing is I get my monthly meals for half off, which is huge. So I've been working there, and because it's food preparation, we never shut down. Usually half the customers come in to make their own meals (we make meals for the other half), but with the pandemic, we've been making everyone's meals, so even I've been a bit busier than usual. I feel for the people who lost jobs or hours, because that sucks, but for us, nothing much changed in regards to our financial situation. We're very lucky, I know. Mia didn't have home therapy for a while, as her PT's company shut that down (she came back in June, though, so that's nice). She did, however, continue with hippotherapy and then swim therapy, which was nice. Many people stopped doing those for the time being because their kids are particularly vulnerable, but the "nice" thing about Mia is that she's really, really healthy if you overlook the brain injury. She never gets sick, even from minor things like colds, and so we decided it would be fine for her to go to therapy, especially because on the day she went - Monday - she was the only one there for a while, and even now there are very few patients in the clinic. Since March I've seen maybe two different kids there, and only a few times. So she's been able to get out of the house a little bit. Her other therapist has continued seeing her in her clinic, which has been awfully nice of her. Mia sees her on Sunday morning, so it's not like there were a lot of people there anyway, and that has also helped her stay limber ... well, at least as limber as she gets, which isn't too much. But still. Part of the reason this has been nice is because her summer camp, which she loves, was shut down this year. It affected Norah, too, as she volunteered there last summer and enjoyed it, so neither kid got to do much this summer. As usual, Mia just watches television as is happy, but she does get bored a little, so losing camp was a bummer. She did, however, get a buzz cut, which Norah gave her because her hair was just getting too long to comb, so that's something. Norah, meanwhile, had a rough summer. She just got bored, too, and Norah needs a schedule because she gets a little lost if she has nothing but time on her hands. She did see one of her friends over the summer (a friend who, oddly, actually had COVID in March, which she said was no fun at all), and they took the opportunity to have their own Black Lives Matter protest on a street corner near our house:

She did some weird things, too. She organized her closet, which isn't weird, but she cleans her room or organizes her closet a lot, more than is probably healthy. She cleans her room and then lets it go to hell almost immediately, which is just bizarre. She also put up a shrine to Frasier Crane in her room, because we were watching Cheers earlier in the summer (before it left Netflix; we haven't gotten Hulu yet and we need to finish watching it!) and she loves Frasier (we had to tell her that Kelsey Grammer might not be the greatest guy in the world, which made her sad, but she still loves Frasier!). So she was trying to fill the time, but she was still bored.


Then, in July, my parents and my sister and her kids came to visit. It was kind of weird, I agree - it was actually the second time my mother had visited during the pandemic, as she came back in March when I thought I was going to Seattle for the Emerald City comic convention, and she still showed up even though it got canceled. They have been careful, just as we have been, and we were fairly confident all would be well, and it seems like it has been (I mean, we could all be carrying the virus and be asymptomatic, but you'd think one of us would have shown it if we caught something). They wanted to come just to use our pool, which seems a bit crazy, but it had been a while since my sister had been here, so it was fun to see her. We didn't do much, but we did take a day trip to Jerome, because my parents and sister had never been there and we figured it would be fun to get out of the Basin for a while, as the temperatures have been ... the usual. Jerome is on the other side of the Black Hills, and the back way through Wickenburg and Prescott is a nice drive. But it does features many twists and turns, and Mia did not enjoy that - she threw up four times on the drive there, and Krys was not having fun with her in the back seat. Once we got there, she was fine, and we had a pretty pleasant day. Some places weren't open, but plenty of them were, and we had a nice day. We took the freeway home, and Mia only threw up once! Progress!

Norah had fun hanging out with her cousins (her female cousin is 11 months older than she is, while her male cousin turned 18 this January, so she's closer to the girl, but the boy is fine), and when my parents flew back to Pennsylvania, she went with them so she could hang out with her female cousin a bit longer. They had a good time in PA, apparently, and got to go to the Jersey shore, so that's all right: !

When she came back, it was almost time for school. The state has been debating this all summer, but despite our governor really liking the president, cooler heads prevailed and we did not go back to in-person school. We had bought Norah a new laptop for her birthday, because we figured she'd need it in the fall, and she got all set up. Last week (the 3rd), she began school, and it's gone pretty well. She has a regular schedule, meaning she logs on at 7.30, and the teachers are trying to make them not wear pajamas and not hang out in their beds. Norah wears lounge-y pants but a decent shirt so the teacher can't tell, and she's been fine in her bed. I get the sentiment behind the stricture, but it seems kind of silly. She's a little happier because she gets to see some friends, even though they're not physically together, and she has a schedule again, so she's not feeling adrift. Her classes are pretty hard so far, it sounds like, so I hope she does well, but I'm just happy that she has something to do now. They claim they're doing on-line schooling through fall break (the middle of October), but we've already told Norah to prepare for January at the earliest. We'll see. Mia is a bit tougher, because we still haven't gotten her logged on. We were using the old laptop that Norah used in the spring, and while Norah made it work, it doesn't seem to work for Mia, and I'm not sure if they revamped their on-line access somehow or what. As I told her teacher, I'm not that bothered by it, because Mia doesn't necessarily go to school to learn (unfortunately), but it's still frustrating. We got a laptop from the school this week, but I haven't checked it out yet, so she still hasn't gone on-line. Part of it is that her attention span is absolutely terrible, so even if she gets to see the teacher and get the lesson, she's not going to do any work, or at least nowhere near what she could do. I'm not a professional, and her teachers and aides really get her to work well, and we don't know how they do it. Plus, the television is always here to distract her, as are the animals, as is food, so we don't think it's going to work for her on-line.

However, this week the head of the Special Ed. department called us and told us they're pretty sure she can go back to school on the 31st. There are only 10 kids in her special ed. class, and her teacher knows that some of them won't be coming back because the kids are medically fragile, so there might only be 5-7 in the class. We're going to start putting a mask on Mia just to get her used to it; I don't know if they will make her wear one, but it can't hurt. She can social distance, because she's in her chair and she doesn't move it very well or very fast, so as long as they keep the other kids away from her, she should be good. I don't love sending her back, but it's not the worst thing in the world. So our fingers are crossed! That's our brief update about what's been going on during the pandemic. Arizona never had an aggressive shutdown (FREEDOM!!!!!), and we don't really frequent restuarants too often, so life for us didn't change all that much. We're wearing masks when we're out and about, and we stay home most of the time with our fancy new back yard and our fancy new furniture, and as we both enjoy, you know, reading, life hasn't been as horrible as it has been for those people who think sports are the only thing in the world (hey, I like sports, but I'm not that bummed about Penn State not playing until 2021 - let's get safe before we kill athletes for our entertainment, yes?). It's summer in the desert anyway, so 110+ degrees tends to discourage people from going outside too much! So I hope everyone is staying safe. I'm sure our story isn't too different from most of y'all, but that's what's been going on here!