The Daughter Chronicles

Sunday, March 07, 2021

Norah learns about life

Norah sailed through her first decade of life, more or less.  She wasn't the best baby; Krys loves to tell her about her whining and crying when her mother just wanted to sleep, but she grew out of that and became a great kid.  She had no issues going to kindergarten, unlike the one kid in her class who cried every day for months because he wanted his mommy (Norah and I still talk about that dude; I hope he got better as the years went on!).  She liked school, she worked hard at school, and she did well.  She was more mature than her cohorts, mainly because we kind of forced her into it.  We told her from when she was very young that we would have to pay more attention to her sister, and it didn't mean we didn't love her, just that she would have to figure things out on her own a little sooner than some other kids.  She's still more mature than most kids her age, but at least the gap isn't as pronounced as it was when she was in third grade.  So things were pretty good with her.

The first day of kindergarten, and Norah has already forgotten her father exists!

That began to change in fifth grade, so in 2015.  She began to do slightly worse in school, mainly because school started getting harder for her.  She still did well, but it wasn't as easy and therefore, to her, not as fun.  She had liked her teachers until fifth grade - well, she didn't love her second grade teacher, but for the most part, she liked them - and it took her a while to warm up to her teacher in fifth grade (her fifth grade teacher was a wonderful woman, by the way, but she was a bit harder and less "maternal" than Norah's fourth- and third-grade teachers, so for Norah, it was a bit of a culture shock), so that initial reaction plus the harder work threw her a bit.  We still think she had never learned enough how to learn, so that when it didn't come easy to her, she got frustrated.  But she recovered and did pretty well.  The other problem she encountered, beginning in fifth grade (well, toward the end of fourth grade, really), was the changing social structure of the school.  The kids began noticing the opposite sex, for instance (or, of course, the same sex but in a different way), and when that happens, things get weird.  Norah was not interested in romance in fourth or fifth grade (and even through middle school, it didn't really concern her), and it bugged her that so many others were.  The girls she had been friends with for years started to be more interested in what boys' attention they could attract, and cliques began to spring up, despite the fact that Norah was in a class with about 45 kids, so it's not like there could be much of a social hierarchy.  The boys began being far more rude - if you think boys today don't act as horribly as boys years ago did because we live in a new era of enlightenment, you're very much wrong.  In fifth grade and sixth grade, she was "betrayed" by her best friend - we got all of this from Norah, of course, so we filter it through that, but it seems like the girl started wanting to be "popular" and thought the best way to do this was treat Norah poorly.  I don't know how bad it was, but Norah was very upset by it.  Norah isn't the most social person around, so it's not super-easy for her to make friends, so losing one who was close to her hurt her.  So fifth grade and sixth grade (which was harder academically for her than fifth) weren't great for her.  She also knew that she wasn't going to go to the same middle school as many of her friends, because we had moved to a different school district before sixth grade but kept her at the school (it was a good school, and we wanted Norah to finish her elementary school there).  So that probably didn't help her.  I still think it was the right decision to keep her at the school, but there's always going to be a bit of doubt in my mind - maybe we should have just moved her into the school in our neighborhood?

Action shot of Norah at the Arizona Science Center

In 2017 she began middle school, and her problems became a bit more acute.  First of all, the school she went to contained grades 6-8, which meant that when she joined in seventh grade, many of the kids had already made friends (more doubt about whether we should have moved her after fifth grade!).  Now is not the time for my rant for the division of grades (K-6 should be in one school, 7-9 should be in another, and 10-12 should be in another, and that's that!), but it did throw her a bit.  And, of course, now she had different teachers for each subject, so she had to adjust to several different styles and, unfortunately, biases and other idiosyncrasies.  It has taken Norah a long time to realize that sometimes, even if she does everything right, things still don't work out for her because of external issues.  She didn't understand that teachers are human and subject human frailties.  Obviously, you'd like teachers to overcome that, but occasionally, you'll get a teacher who simply doesn't like you.  They might not grade you poorly, but they might not give you the benefit of the doubt if there's some gray area.  Norah couldn't understand that.  She didn't make it easier because as she got hit with those same hormones that made her friends so nuts in fifth grade, she obviously changed a bit.  That's just what happens!

Getting ready for seventh grade!

Obviously, she got her period.  This has not gone well.  It's pretty bad, according to Krys (who knows a bit more about this than I do).  Her flow is quite heavy, and it lasts longer than "normal."  It messes her up physically quite a bit, too, as her cramps are pretty terrible.  So that's no good.  We put Mia on birth control pills years ago because we wanted to skip her period, as she has enough problems (I'm sure some people know this, but if you take the Pill and skip the placebo week, basically you wipe out your period).  Norah thought this was a great idea, but her doctor thought it would be better to wait until she was a bit older.  So she had to deal with that for a few years.  Just recently we put her on the Pill, so we'll see how that works (I think it's only been two weeks, so it's too soon to tell).

Look at the attitude on that shirt!

She had other issues in middle school, too.  She made some friends, but she was into the thick of "mean girls" territory, and she was ill-equipped to navigate those waters.  She was friends with someone one week, and the next the girl was her enemy, and Norah often had no idea why.  She's always been very respectful of authority, so she never questioned her teachers, and she had trouble even speaking up in class to ask questions about the work, because she didn't want them to get mad at her (yes, that's really what she says).  I always wanted her to be a bit more competitive, not in a crazed, unhealthy way, but in a way that would motivate her, because too often she'd feel bad for, say the person she was playing tennis against, and I think she wouldn't try as hard because of that.  She's gotten better at that, but it took her a while, and I think for a few years, she wasn't terribly motivated to do well in school, even, because it might make her friends feel bad.  And, of course, when the work got hard, she got frustrated and didn't do it, which put her further behind.  It was a vicious cycle.  She managed to do fairly well in middle school academically, but her social life wasn't that great.  She didn't want to act the way girls wanted her to act to get into the right cliques, and she didn't find a lot of people who shared her interests.  Also, as she became a bit more interested in romance, she found what most adults know - teenage boys are complete idiots.  So that didn't help.  She just couldn't figure out how to be a person and have friends who weren't jerks and just have a nice time.  It was a frustrating time.

Chillin' at the Eiffel Tower

High school hasn't been much better, but a little.  First of all, more of the kids are at Norah's level of maturity, so she's been able to make some friends (even though some still turn around and act like jerks for no reason) and she's playing tennis and enjoying that.  School work, however, has become more difficult for her, and it goes back to her motivation.  If she likes a subject or the teacher, she does pretty well, but if not, her grades suffer.  I know that's probably true of a lot of kids, but it's still frustrating.  (Krys gets "mad" at me because I really liked school, from kindergarten all the way through twelfth grade.  I never had any academic problems, and I liked all my subjects, even math!  So it really is hard for me to relate to Norah.  Krys does much better with that.)  She was doing okay in ninth grade, but then the pandemic hit.  That was not a good thing at all.  She did fairly well after Spring Break last year, because the school let them work at their own pace and it wasn't as rigid.  That seemed to suit her, but we knew she would need the guidance of the teachers for the long term.  So this year has been very frustrating, to say the least.  The school district had four months or so to come up with a plan to have the kids in school, but in August, they still hadn't figured anything out (Mia's Special Ed. teacher said she hadn't heard anything about what they were doing until a week before school started).  Then they decided to do on-line school, but they offered full on-line school for the entire year or the option of going back in person when it became available.  We chose the latter, but it sounds like the on-line for the year option might have been better for Norah (I don't know the particulars, but it seems like they do half the curriculum in the first half of the year and half in the second, so it's a bit more intense but there aren't as many subjects, which might have helped Norah focus).  She was on-line for a few months, and then they let the kids back to school, with half the alphabet going on Mondays/Tuesdays (Norah's days) and the other half going Thursdays/Fridays, with Wednesdays being a day to catch up on work and meet with teachers (on-line) if they needed it.  That didn't last long.  Kids were ignoring mask mandates, kids were coming to school with symptoms, kids were coming to school after they had been tested but before they knew the results.  Arizona is run by a deeply Republican governor (and the legislature is largely Republican, too) and businessman (he was the CEO of Cold Stone Creamery for 12 years), and the state never really shut down too severely even though for a while it was showing more COVID cases per capita than anywhere in the world (we're #1!!!!).  So we probably have a lot of people who think it's no big deal, and they didn't think anything of sending their kids to school and probably telling them masks are no big deal.  So after a few weeks, Norah was back on-line, where she's been ever since.  It has really been a struggle for her, especially because she hears so many of her friends saying how wonderful on-line learning is.  She needs interaction with the teacher, because, as I noted, her motivation is always an issue, and being in class keeps her focused.  Her refusal to challenge authority is even worse when she isn't in class, so she rarely asks questions about the work, even when she doesn't understand it.  She doesn't ask us questions even though we're fairly smart people and have begged her to ask us for help.  Part of this is our fault, of course - when we told her when she was young that we had to deal with Mia more, she really took that to heart, and now she thinks that if she bugs us too much about helping her out she's being a burden.  Yes, we've told her that's not true, but it's very hard for her.  People hear what they want to hear, and kids especially, so she internalizes any and all criticism from anyone and never hears the praise.  I'm sure none of you readers do that!

With her awesome aunt in State College, PA

So that's where we are.  She is going back to in-person school after Spring Break (so, the 15th of March), and I hope against hope that the school will enforce mask protocols and social distancing.  I don't have a lot of hope, but we'll see.  Norah knows that some kids are staying on-line (the school is keeping that option), so I hope it's all the knuckleheads who think COVID is harmless.  We've been in contact with her teachers, so they know that she's been having issues with the quarantine, and they've told us (and Norah) that they're always ready to help her out.  She needs to make that step, but she seems more inclined to do that recently, so that's good.  She's been playing tennis for school, and she's friends with some of those girls, so that's helped her lack of social interaction for so many months.  If the world gets back to a semblance of normal, that will surely help her out.

Those are some fierce pants!

I hate seeing Norah learn that life is often terrible.  She has had to learn that people can be jerks and terrible friends, that boys are often idiots, that things happen to you beyond your control that might be wildly unfair, and that hormones wreak havoc with your body.  None of that is fun!  I often tell her that I would hate to be a teenager right now, because teens today have to deal with everything teens go through when they grow up, plus there's social media, so everything is amplified and permanent.  Norah and her generation are much more politically interested than I was, so there's another layer of stress on their already stressful life.  All of this messes with kids a lot, and Norah's generation has had to deal with this stupid pandemic as well.  She's still a wonderful kid, obviously, and we're very glad she is well behaved, she doesn't do drugs, she cares very deeply for her sister, and she has a very strong social conscience.  I just hope that these annoying and frustrating days don't last much longer and she can continue to grow into the amazing woman I know she'll be.  We'll be there to help her, obviously, and we know it's going to be difficult.  But it will be worth it.

Pandemic chic!

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!

Saturday, April 18, 2020

Not even Kip Winger wants to celebrate this anniversary!

Today is 18 April, which means, once again, that it's the anniversary of Mia's car accident, which I grimly write about every year. On Good Friday, 2003, I was struck from behind by a flatbed tow truck while my car was motionless on the exit ramp to Chandler Boulevard off the I-10 South. He hit us while he was going approximately 60 miles per hour, and permanently damaged our 7-month-old daughter. Such is life.

These updates aren't as momentous as they used to be, mostly because Mia has settled into a nice routine, and luckily, she doesn't have to have much done to her these days. Last summer, she went back to her summer camp, which she's gone to for over a decade, but this time Norah went with her as a volunteer. She and Norah weren't together - Norah had a class of younger kids to deal with - but they saw each other occasionally, and we always think Mia likes seeing her sister, even if she doesn't express much enthusiasm when she does.
The same thing happened this past school year. It was the first time Norah had been in the same school with Mia, and she told me that she would see Mia every once in a while, and Mia would usually either point at her or say nothing. Mia doesn't respond to questions very quickly, so if Norah asked her who she was, she often would say nothing. You have to coax it out of her, and Norah never had the time. But Mia did get to see her sister every so often, and we think she likes that, even if she doesn't express it.

This school year was a bit more bittersweet than the others, as this would have been Mia's senior year. We're kind of bummed, because her cousin is also in his last year of high school, and while we don't speak to my sister all that often (as she lives 2000 miles away), we've still been hearing a bit about his preparations for life after high school. Mia gives all indications of being a smart girl, so we're wondering what she would be doing right now if the accident hadn't interrupted. We're going to keep her in school as long as we can, obviously, so it will still be a few years before we have to think about what to do with her. But it's still a bit sad, because we'll never know what her plans would have been if she had been able to make them.

She's turning 18 in August, too, so we have to move forward with taking over guardianship of her. In Arizona (and, I assume, in other states), if you have a special needs kid who can't live on their own, when they turn 18 you have to go to court to get guardianship of them, given that they're technically adults. I've had a few conversations with a parent who's gone through this, and it doesn't sound like too painful a procedure, especially in Mia's case, where it's clear she can't live on her own (it might get sticky if the kid is mobile and mentally able to live on their own but, for instance, might be taken advantage of because they're too trusting).
Her lawyer has already mentioned it, and that's something that will be coming up in a few months.

As for this last year … nothing much has changed. She's doing well, both in school and physically. She keeps working on basic skills, and she's doing quite well with those, and she still loves school. They were able to procure a chair much like the one we got, that converts into a stander, and she's been using that a lot at school, which helps her muscles and gets her out of her chair, which is always nice. She's still getting her therapy, both in school and at home, although that's slowed down a bit, not surprisingly. She's been very healthy, as usual, and while her seizures continue, she seems to be in a down period right now, as they haven't been coming in as great a frequency as they were for a while there. I don't know if just being at home and being relaxed all the time has helped, but they seemed to be tailing off even before the schools closed, so maybe that's not it. She's been getting more sleep recently, obviously, which is nice. Her school bus was picking her up at about 6.10 in the morning, which is no fun for anyone, so just the fact that she can sleep past 7 probably helps her. One of the weird things that has happened recently is that she lost weight. We saw her gastroenterologist in January and she had lost about 6 pounds, which is pretty significant for someone who still hasn't cracked triple digits in weight. She was down to about 85 pounds, and I had no explanation for it. She was still being fed her regular amount, she still eats solid food sparingly but consistently, and it's not like she started a new exercise regimen or anything. The doctor wasn't too concerned about it, just puzzled. We're feeding her a bit more than we had been, but I guess we won't find out if her weight is back up until we head back to the doctor … and who knows when that will be! It's just a bit strange, is all.

Of course, the big news is that she hasn't been to school since 6 March, and her therapies have been severely limited. Her teacher has dropped off work for her to do, but she's spectacularly bad at concentrating when she's at home, so we haven't even tried to get her to do work. We think that she knows school is the place to work, so even though they let her watch television occasionally, she still does work there. Plus, of course, her teachers and aides are quite good at their jobs! When she's at home, however, she knows that's the place to watch television, so even if we try to get her to work, she gets too distracted. So she's been watching a lot of television, unfortunately.
She was getting therapy at school, of course, and that's not happening anymore. Her physical therapist, who comes to the house, has been shut out of homes by her employer for several weeks, so she's not getting that. Her occupational therapist decided to distance herself, and then last week she called me to tell me that she was moving out of state, so she won't be back. That's great for her - she's a very cool person and I hope she does well - but not great for Mia, even though she wasn't getting OT recently anyway. I hope that by the time this is over the clinic she goes to will have hired a new OT. We shall see. She is still going to horse therapy, which is nice for her. The clinic isn't that big, and most of the parents have voluntarily kept their kids away (a lot of special needs kids have immune system issues), so she's only in contact with 3-4 people when she goes, and it's good to get her out of the house and out in the fresh air. She's also going to her other therapist on Sunday, whose also stopped seeing most people in person, so her circle has shrunk as well. Mia needs to move around a little bit, and while we try to get her into her chair and get her standing often, it's nice that she's still able to get some therapy to go along with it. I always joke that everyone has a certain amount of health "bad luck," and Mia used all of hers up in one shot, so she's now indestructible. She never gets sick, and she hasn't shown any signs of coronavirus symptoms at all (none of us have, which is fine with me). So while I wish she were still in school, at least she's able to do some things and she's certainly not bored, because she gets to watch a lot of television!

There's not much else going on. We took her to Pennsylvania in July for our anniversary party, and she had a grand time. My parents visited over Christmas, and while Mia doesn't seem to care who's around her at any given time (even if it's her mother and father), she does seem to like seeing her grandparents. My mom came out in March, because I was supposed to go to Seattle for the comic book convention and she was going to help Krys with Mia, but even though that was canceled, we still told my mom to come out.
Looking back, maybe that was foolish, but we all survived. So Mia got to hang out with her grandmother a bit more. We hope that my mom, sister, and her kids are still coming in July, but we'll see. Mia continues to do well, and we're just happy that there's nothing upsetting her routine too much. Her health is fine, she's still learning stuff (slowly, but still), and she seems perfectly happy (most of the time; she's still a teenager). Obviously, we're happy she's alive!

If you're interested and missed things, here's the post about her accident. And, of course, my annual updates: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, 2017, 2018, and 2019. Thanks, as always, for reading. I always hope I'll update more than once or twice a year - we'll see going forward!

Monday, November 25, 2019

Our vacation to the garden spot of the world ... Pennsylvania!


Hey, it's November, and I decided that I should probably write a little about our trip to Pennsylvania in July. Timely updates matter greatly to me here at the blog! We went to the old homestead area because this year was our 25th anniversary, and I thought it would be fun to have a party at my parents' house and invite a bunch of people we probably would have invited to our wedding if we hadn't gotten married in Portland, 3000 miles away from almost everyone we knew (no regerts!). The kids were done with summer camp (Mia's, at which Norah volunteered this past summer), they didn't have anything going on until school started, and Krys had a little time off from work, so we were good to go! Krys didn't want to take too much time, so I went with the kids a few days earlier, on Friday, 12 July. She joined us the following Wednesday, and we spent the rest of that week and the next week chillin' in PA. We had a grand old time!

Before Krys got there, I hung out with friends of mine. On Sunday I went to a barbecue at my friend Frank's house, where I caught up with him and a bunch of other old friends. I hadn't been back to PA since 2012, which has been my longest stint away from there since I moved away in 1993. Airfare is just getting so expensive, and I can't go alone because Mia is too big for Krys to handle, so it's the whole family or nothing! So there was a lot to catch up on. I found out one of my friends whom I hadn't seen since the late Nineties was in town, so I had breakfast with him and we talked for hours. One night I went to my friend Dave's house to practice singing, as I was planning to perform some songs for my lovely bride at the party and I needed to get together with my band - three musical friends I had asked for help a few years ago. I hadn't sung in public in 30 years, and needless to say, I needed the practice. So that was fun.

On Tuesday we went to beautiful Columbia, Pennsylvania, home of the Turkey Hill Experience. The Turkey Hill Dairy is a local phenomenon, and the "Experience" is a very kid-friendly museum about how they make ice cream and other dairy products. We figured Mia might actually like it, so we took her, and my sister's kid, who gets along very well with Norah, came up for the weekend and decided to stay the entire week. It was fun - we mixed up some ice cream, saw various displays, and Mia seemed to enjoy it … as much as she enjoys things, which, if it's not television, isn't all that much. But she behaved herself, which is nice. Unfortunately, the weather was already getting bad - that week, apparently, was the worst of the summer - with the heat rising steadily and the humidity getting worse and worse. I grew up in it, but that doesn't mean I like it!




Krys came in on Wednesday morning, and we went out that night to a trivia night with Jen and Jeff, two of our friends. They had finished second the week before with only them and one other person on their team, and they figured we would put them over the edge, because our knowledge of useless pop culture trivia is so vast! And we did - we won, which was nice. The next night (after a horrid day), we were out at a different place with different friends, and we won another trivia contest. Good times! On Thursday, before our night, we went to Hershey Park. I love roller coasters, and we thought it would be fun. We figured we could meet my sister and her son there, and have a grand old day. Unfortunately, it didn't turn out that way. We got stuck in traffic on the highway because there was a horrible (and fatal) accident some miles ahead of us. We got off the freeway and tried to get onto a different one, and we got a little bit lost (Krys's phone was showing us how to get there, but the orientation was weird, so I kept turning right instead of left, for instance). Finally we were on our way, but we were 90 minutes behind schedule or so. The weather was ominous, too - all the way there, we kept seeing dark clouds and we were getting a little rain, but we were hoping it wouldn't hit Hershey. We got there almost two hours after I wanted to get there, because I wanted to ride roller coasters before it got too crowded and go to the water park, which is relatively new and which I didn't know existed the last time we were at the park (maybe in 2011?) and I love water parks. So we got there late, and I had a sinking feeling that we wouldn't get to do the water park, but whatever (I wanted to get there relatively early because I had made dinner plans, so we couldn't stay too, too late). Of course, as we were standing in line for the first coaster, it started pouring. That wasn't too bad - I don't mind getting wet, and it cooled everything down temporarily - but it was still a nice metaphor. Of course, then it stopped and the humidity got even more oppressive! Then no one wanted to ride coasters with me. The kids were either blasé about it (my nephew, who's 17 and blasé about everything except video games) or they didn't feel great (my niece and Norah) and they just didn't like the coasters (my sister). Luckily, Krys went on several with me, because she's awesome. Of course, I didn't get to go to the water park, and I couldn't go on one coaster because I was too fat (seriously - it really made my day!), and we got to dinner 45 minutes late, but the coasters were fun, and dinner was great, so the day wasn't a total loss.


We had our party on Saturday, and it was a lot of fun. It was ridiculously hot and humid, and I changed shirts three times, I think, because I could never get cooled down. I was running around helping set things up in the morning, and then I just couldn't sit down and relax a lot, but I didn't care too much. A bunch of Krys's high school friends came, her sister and a bunch of her family came, a bunch of my high school friends came, and I think everyone had a good time. It was so great to catch up with people, and I really do wish I had had more time to talk to some people, because it had been so long since I'd seen them. I love my friends, and it's so nice when I can actually hang out with them. Eventually I performed my brief concert for Krys, as part of our anniversary celebration, and the less said about it the better. My voice is pretty good, but again, it's been years and I'm out of practice, and I also haven't used a microphone very much in my life, so I was too quiet. My friends played brilliantly, though, and I hope everyone enjoyed it even though it wasn't the best singing in the world. The next day was also fun, as my cousin and aunt who couldn't make it the day before came by for brunch, and my cousin and aunt are pretty awesome, so that was fun.




We hadn't been up to visit Krys's homestead yet, so we did that in the next few days. We all went up on Monday and had dinner with Krys's dad, sister, and brother, but then I went back down to my parents' house because there was no place for Mia to sleep. On Tuesday, I went back up to Pottsville, without Mia, because we were going to State College to check out Penn State, which Norah really wanted to do. We drove there on Tuesday afternoon and spent most of Wednesday there, which was fun. I hadn't been back on campus since the mid-1990s, and while a lot was the same, it was cool to see some of the changes. We showed Norah where Krys and I lived (Krys lived in an apartment off-campus, while I lived in West Halls), we went to the Nittany Lion shrine and the Creamery, we drove past the stadium, and we strolled around downtown for a while. It's such a nice town, and Norah loved it. I don't know if she'll want to go to school there (out-of-state tuition is bad, man!), but it's definitely on her list.




After that, we chilled for the rest of our time there. A lot of my friends were doing other things, so I was glad I got to see them the week before, even if it was hectic. We went out to dinner with my parents one night and with Jen and Jeff another, and then we flew home. I had a good time, and while I was there for over two weeks, I still would have liked to stay a bit longer. Mia watched a lot of television - my parents set up a TV in my dad's den, where she slept, so she could watch without interfering with the big television in the main living room - and when she did go out, she seemed to enjoy herself. I felt bad that on the day of the party, it was so hot that I could barely take her outside. I brought her out for about 10 minutes, but I could see that the heat was making her really uncomfortable, so I took her back inside. Mia can be very friendly, and a lot of people hadn't met her, so she would have had a good time, but I could see it wasn't going to happen. Norah had a great time hanging out with her cousin, and it was excellent to see not only my friends, but my sister-in-law, who's awesome. I am glad I moved away, because it was absolutely the right decision, but I do miss my friends. It's fun to see them when I can!

So that was our quasi-vacation. We've done something for three consecutive summers, and I don't know if we will do anything next summer. Traveling is expensive, people! Plus, it's so tough with Mia. We didn't have to drama at the airports that we did when we flew out of Florida a few years ago, but it's still a pain to fly with her. She was great on the plane, of course, because she seems to like the steady drone - it helps her sleep, naturally, and I was kind of annoyed that random people kept sneezing or coughing on the red-eye to PA and waking her up - and she's remarkably patient, remarkable because she can be so impatient elsewhere. She spent a lot of time in her wheelchair - the bed she slept in wasn't a hospital bed like we have, so we couldn't raise the head - and I think she got a bit stiff after a while, but we tried to get her out every so often so she could stretch. But I think she had a good time, and my parents love seeing her, so we'll call it a success. And despite the heat and the crappy day at Hershey, I had a good time, too. I don't see my sister all that often, and she's fun to talk to, and it was nice driving around and checking out old haunts. Maybe it won't be seven years before we head back there!

Thursday, April 18, 2019

Not-so-sweet sixteen

Today is the sixteenth anniversary of the car accident that caused Mia's traumatic brain injury, and as I do every year, I'm going to write about the year and how she's doing.
It's a tradition! Even as I update this blog less and less because there's not a ton to write about these days, I do like giving people an overview of how Mia is progressing, even if that progress is very slight and slow.

This past August she turned 16, which blows my mind, as I'm sure it does every parent whose kids grow up. She finished her first year of high school last May, had a fun summer going to her camp, and is now almost done with her second year of high school (she's technically a sophomore, but as we plan to keep her in high school until she's at least 21, the traditional designations for what year she's in don't really work). Her first year was good, but I think this year has been a bit better. The teacher and aides know her better, and she has had one peer tutor assigned to her all year, and while I'm not exactly sure what the girl does with her (I could ask, I suppose, but I'm not that curious), I have met her and she seems very nice.
She's learning quite a bit - she knows how to add simple numbers and she uses a stamp to "write" down the correct answers, and she recognizes a lot of words even though she can't really read. She has been eating quite well both at school and at home, so she's gained a little bit of weight - she's up to about 91 pounds right now, and it's getting harder to lift her, let me tell you! - and she always seems to have a grand time at school. She knows who the bus is picking up and in what order, so every morning she tells the driver who she (or he) needs to get next. She continues to enjoy getting out and about at school - she can't go into mainstream classes, but she still loves choir and she always digs P.E. We're just impressed that she does as much work as she does, because when she's at home she is far too distracted to ever try to get her to do brain work.

She's doing well in therapy, which is nice. She continues to swim in the summer and ride horses in the winter, and she made great strides with her occupational therapist this year. She was working on Mia getting her shirt off, which Mia likes to try when we're changing her, which I don't let her in the morning because it takes too long but we often try to encourage when we have some more time (usually we're too impatient, but that's just the way it is).
She also got much better using a knife this year, which I find fairly impressive, and I watched her do it once and saw what a good job she's doing. Unfortunately, her OT is leaving the state, but we're hoping that Mia can pick another one up who can continue working on her with her fine motor skills, because they've gotten much better this year. Of course, the big news this year was that she finally got her activity chair, and that's been working out quite well. She likes sitting in it, and she's standing in it like a pro. She often likes to stand up just to stretch her legs - she gets tired of it quickly, of course, but it's nice that she doesn't really whine about it. If you get close to her she might say "down" quietly, but she's not standing there whining. I think she likes it because it makes her tall, and she gets a nice, slightly different perspective on the world. At school, this year they were still putting her on the standing frame that is simply a flat board with restraints on it, but the therapist there wants to get the chair we got for the school, mainly for Mia, I guess, but probably for other kids, too. Mia's home PT recommends this chair for almost every kid she sees - it's only not great for kids with very low muscle tone - so she wonders why they haven't already gotten one. Of course, I doubt that it will take 13 months for them to get theirs, but I hope they have it when school begins in August, because I know it's very good for Mia. We shall see.

Her seizure activity has been bizarre. She was having a few every once in a while, and we had discussed getting some CBD oil for her, as we thought it would help.
I took her to the neurologist in October but forgot to discuss it with him, and we were going to wait because she was seeing him again in March. Right at the beginning of the year, though, she started having them every night. They're still very short, but she would have at least two and occasionally up to five every night, and it would wake her up and cause her to be sleepy in the morning. It was frustrating because she went through a period for about two years where she didn't have any, and she had never gone through a period where she had so many. After two weeks we went to a local CBD dispensary and got some oil and some ointment for her twitching legs, which are an intermittent problem (no one knows why her legs twitch, not even doctors). We started giving her the CBD oil and noticed an immediate improvement, and it's taken a few months, but she's having fewer and fewer seizures - less than once a week over the past month or so. I took her to the neurologist in March and talked about it, and he was fine with it - he gave me a few pointers about it, and noted that the very few studies that have been done on CBD show that it helps best with seizures. So that was encouraging. The ointment didn't work as well - her leg twitchiness comes and goes, and it came and went while we were applying the ointment, so it didn't seem to have any correlation with the ointment. Both products are a good chunk of change, so we decided to forego the ointment and keep giving her the oil.

There's not much else going on.
She's doing very well, she's working pretty hard in school and she's liking standing at home. She eats a good amount and tries some new things every once in a while, and she enjoys some of the new DVDs we bought her for Christmas (she digs the Wiggles and Mickey Mouse Clubhouse DVDs we got her, including the Wiggles DVD which guest-stars Lou Diamond Phillips, of all people, but she is still not happy with Moana or The Incredibles, and I'm about ready to give up on those) and we still try to get her to play the keyboard we got her, which she does occasionally. She was much better at moving her old wheelchair because it was narrower, but she's gotten decent at moving the new one around, although she usually doesn't have much reason to. She's still a terrific kid, of course, and she seems to be enjoying life as much as she can, so I guess we can't really complain!

I always link to the post about her accident, and I always link to the annual updates: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, 2017, and 2018. I can't believe it's been so long since that awful day, but as always, we're very happy she's with us and she always makes our days brighter. Thanks for reading, everyone!