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.