Dominic Update #9

When you are just being you, an object in space, your body is doing a hundred hundred thousand things you’re probably not aware of. Things that only become apparent when something disturbs the natural order. It wasn’t until Dominic’s surgery that I learned that the growth plates in bones extend from the ends, so that even though he is very much a growing boy, the titanium rod holding his right femur steady won’t affect its growth. But that in turn led me to ponder in amazement just how leg bones work when they haven’t been broken: there’s these two bones, not at all connected, and they grow at the exact same rate so that your legs stay the same length, all through your childhood. How the heck does that happen?

Or think about walking. When you do it, your feet land on the ground naturally, back to front, heel to toe. Your toes are pointed forward, more or less. Your legs stay under your hips. An intricate dance, performed unconsciously — until something throws it off, at which point you have to get it all back again. That’s where Dominic is. Physical therapy, three times a week, all about stretching, strengthening the right knee and leg, and restoring his natural stride. He is still using one crutch, when he has to walk for a bit, though at this point its function could be replaced by a cane or walking stick or the like. That function probably has a psychological component, though it’s hard to say how much. Every day I sound like a broken record –“Toes forward! Heel to toe!” — and I wonder how much of it is that his leg still isn’t steady enough, and how much of it is that he just needs to learn to trust it again. The trajectory of his recovery is good, the outlook is all good, but I won’t be fully at ease until the limp is gone.

In the middle of all this, we went to Michigan for a week and a half to see family and friends. It had originally been planned for earlier in the summer, but we decided to push it back until a time when Dominic was a little more mobile, which proved to be a good choice. His daily stretches and exercises and his nutrition regime may have suffered a little, but after we got back his physical therapist was pleased with his progress, so we did all right. After Michigan, he and I took a detour on the way home and went to Gencon. This was a plan from long before the accident, so it doesn’t strictly have to do with his recovery — and yet it was recovery, for his mind and soul if not his body. It felt like a closing chapter, a last stop on the long road that started to on May 17.

Gencon is a gaming convention, sixty thousand people filling up the convention center in Indianapolis, all the surrounding hotels, and the neighboring football stadium. Board games, roleplaying games, card games, miniatures — if you’re familiar with that scene you can probably picture it (though it’s way bigger than you’re picturing), and if you’re not, nothing could possibly prepare you. That first day in the exhibit hall, Dominic was like a kid in a candy store, hardly knowing where to go or what to see first. Most people show a little bit of extra deference and caution when they see a kid with a crutch, but, oblivious to the attention, he just used the extra space people afforded him to cut through the crowds that much faster. I was the one who had to hurry to keep up with him.

His main reason for wanting to go to Gencon was to attend a live taping of The Letters Page, his favorite podcast, in front of a studio audience. It consists of two guys, Christopher Badell and Adam Rebottaro, discussing and answering questions about a superhero universe of their own invention, which got its start in a card game they made but has spread to a variety of other games and books. Dominic has listened to every single episode of that podcast, and wanted nothing more than to see a live taping and hopefully ask the guys a couple questions in person.

As a lifelong geek I’d be the last one to look askance at somebody else’s quirky niche interest. But it’s fair to say that before I took him to the taping, I didn’t “get” it — didn’t understand why this particular corner of geeky-gamerdom appealed to him so. Christopher and Adam are masters, though. The world is overfull of dudes chatting into mics about some bullshit and calling it a podcast, but these guys have it all — the wit, the delivery, the banter, the chemistry, the passionate fans. I enjoyed being there just for myself, but it was an incredible seeing Dominic there. He was one hundred and ten percent engaged, laughing at all the jokes, enjoying being among fellow fans, getting to ask his questions, thrilled at their attention — it was literally everything he dreamed it would be.

When you have kids it extends your vulnerability — when they get hurt, it hurts you too. It’s just one of many prices they exact upon you. But the converse is true as well — when they find the thing that gives them deep joy, you get a part of that joy — seeing them happy makes you happy in a way that is deep and real. Seeing Dominic so whole in that moment almost made me believe he might toss his crutch aside and not walk, but run out the room and down the hall — even strides, toes forward — pumping his fist in the air victoriously. That didn’t happen, of course. But maybe he walked out of there a little straighter. And it made me say to myself, once again, believing it a little more each time: Dominic is going to be OK.

Some pictures:

With Christopher and Adam after the podcast. This is a kid who cannot smile naturally for photos 99.9% of the time.
Obligatory escape photo from the trash compactor on the Death Star.
Waiting for the bus, tired and pensive after a long Gencon day.

Dominic Update #8

After an x-ray at the last follow-up, Dominic got the all-clear for his left shoulder — at long last, we bid farewell to the wheelchair. Thus began the long tail of his recovery. The big life disruptions have one-by-one fallen away, but what’s left will be with us for a while: A slowly-improving leg, assisted by crutches. Physical therapy, three times a week. A long list of stretches, exercises, and nutrition guidelines to follow at home.

He took to the crutches quickly enough, but what’s most encouraging is the discipline he exerts to use them the Right Way, not the Easy Way. The Easy Way would be to use his good left leg and the crutches to propel himself forward with great power and speed. It is tempting. But what he is supposed to do, of course, is to put pressure on his right leg, and use the crutches to assist with that and make sure he doesn’t press too hard on it. It makes for a much more awkward gait, but one that lets him push the envelope on his leg. As a general rule, he is not one for envelope-pushing. But time and again, when he sees it’s what’s needed to recover, he grits his teeth (sometimes literally) and does it.

We had started growing accustomed to the THUD THUD THUD of him hopping all over the house on one leg. But just a couple days ago he made the switch from the hop to the cautious limp — much quieter, and a step in the right direction, though we have to keep reminding him to keep that toe pointed forward. It’s made me realize that this won’t be “over” until he can walk and run normally, and that might still be a ways off, especially if there’s subtle ligament damage or alignment issues that can’t even be detected until he’s back to a normal range of motion.

Hopefully, though, by the time we hit GenCon together at the beginning of August, he’ll be down to one crutch … or maybe none? Time will tell.

Dominic Update #7

Today, we reclaimed the living room. After weeks of Dominic sleeping on the couch, we disassembled his improvised mini-man-cave, put the Xbox back in the basement, cleaned his room top to bottom, and moved all his stuff back where it belongs. This was precipitated by a test-run on Friday where he successfully clambered up into his loft bed and out again.

So yeah, things are steadily improving. Indoors, Dominic hops everywhere with increasing confidence bordering on recklessness. Outdoors, he still uses the wheelchair. On Friday he’ll have his next follow-up, when he’ll get his shoulder x-rayed and we’ll find out whether he can ditch the wheelchair and switch to crutches. He still doesn’t like putting weight on his leg, and I suspect there’s going to be a ton of physical therapy in his future to get it back in shape.

If Phase One was that first week or so at home, when he couldn’t even do stairs at all, then we’re now at the end of Phase Two. I look forward to Phase Three getting even closer to “normal” life: for me, regular exercise, consistent piano practice, reasonable diet. All the usual regimens went out the window with the accident and it’s taking time to get back into the swing of things.

I would like to give a shout-out to the board game Gloomhaven, which has helped D and I fill the long hours at home these past few weeks. It’s a game that comes in a gigantic box with tons of sealed containers and envelopes tucked inside. The sort of game where you gradually unlock new maps, pieces, rules, and challenges each time you play — and you have to play dozens of times, countless hours, before you ever get to the “end.” The sort of game that even those brave or foolish enough to buy it rarely play more than a few times — but we have. If you have a high tolerance for complex and difficult fantasy-themed boardgames and are stuck at home caring for a similarly-inclined twelve-year-old with limited mobility, I highly recommend Gloomhaven.

Dominic Update #6

Things are starting to feel “normal,” for some value of normal.

Every day he pushes a little bit further in terms of independence and mobility. He can sit up, stand up, even hop around short distances. With a little assistance he has scooted/hopped/scooched downstairs to watch a movie, and upstairs to take a proper shower (with the help of a shower chair). The living room is still his bedroom and base of operations, but I could see that changing in a week or so.

Yesterday was the follow-up at Children’s Hospital. Two weeks ago, the trauma and surgical care sections were the picture of efficiency, efficacy, and comfort, but returning to the orthopedic center for a routine follow-up visit showed us another side: traffic, overcrowded parking, overcrowded waiting room, 90 minute (!) delay for our appointment. Fortunately everything looks good: his leg x-ray checked out, and he got the stitches out of his left knee. The doctor encouraged him to put some pressure on the right leg and see what he can get away with. At this point his only restrictions there are his own pain and the time it takes to wake up the muscles again.

Suanna’s out of town for work this weekend; if you had told me a week and a half ago that Dominic would be well enough by this point that it wouldn’t be that a big deal, I wouldn’t have believed you. Sure, there’s a little bit of extra logistics with everything, especially if the wheelchair is involved. But it’s manageable. D stayed home this afternoon while Ella and I ran to the music store for a couple errands. She needed repairs on her marching clarinet, but I was there to see what could be done about Dominic’s violin case. We are renting his violin from the place, and it turns out we were paying the little bit extra for insurance, so they actually just swapped out case and violin for another one, easy as pie.

That was nice and all, but part of me was reluctant to let that case go. It got cracked when the car hit Dominic, and though we haven’t sussed out all the details yet of where exactly he got hit and how his bones were broken, it seems at least possible that the violin case bore some of the impact and spared him even more injury.

His next follow-up is in three weeks, where he’ll get his shoulder x-rayed again and see if he can switch to crutches. Before that, he’ll finish up his remaining school work from home. But before that, we have perhaps the clearest indication of “normal” there is for him: he’s going to have some friends over tomorrow afternoon to play D&D. He is beyond excited.

Dominic Update #5

We weren’t really sure what sort of recovery patient Dominic would be. Easier to predict what it would have been like if all this had happened to Ella: she would have tackled it with steely determination, pushing the envelope of her mobility, masking the pain, and showing no weakness whatsoever. But D is thoughtful, sensitive, empathetic, emotional. And, God bless him, he doesn’t handle pain particularly well.

So it has been especially inspiring to see him confront his situation with true grit. Every day wants to try something new, pushing me away so he can sit up by himself, then stand up by himself. His right leg is still very sensitive and basically deadweight, but he has become adept at propping it up with his left leg underneath and shuffling it to where it needs to go, an inch at a time.

Recovery is going very well, better than expected, but that doesn’t mean there aren’t things to worry about as a parent; they get pushed further back. At first, after the initial shock, we worried about head trauma, or spinal damage. When that cleared we worried about the surgery. Then it was how on earth we would get him home and what things would be like there. Now that we’re there and it all seems difficult but entirely manageable, the worry horizon extends past days to weeks and months — once he starts what will certainly be a long course of post-recovery physical therapy, will any other issues crop up? Subtle distortions of his bodily alignment caused by the impact, unnoticeable until he’s moving around again? Will he walk with a limp? These possibilities are outliers — in all likelihood he will have a total recovery — but that’s just the sort of thing that is perfect fodder for parent-worrying. The thing that’s not very likely but possible. Like getting hit by a car crossing the street.

Even though he hasn’t gone out much, the past couple days have been busy with a consistent stream of visitors. It’s especially touching to watch him and his school friends when they come over to see him. A few different boys have come by, but the steps are always the same:

  • A concerned 12-year-old shows up at the door.
  • As they are let inside, they are hesitant, not really sure what to expect, bracing themselves for they-don’t-know-what.
  • Then, when they see that Dominic looks pretty normal and is in good spirits, their relief is palpable.
  • There follows a period of trying-to-talk-about-what-happened, replete with awkward silences.
  • But then they both realize that they can just talk about the things they usually talk about, and the awkwardness evaporates.

In their visits and their texts and calls, it’s great to see kids whose usual discourse is a constant stream of fart jokes, Internet memes, and MCU conspiracy theories pivot instantly to touching concern and emotional support for a friend. Hope for the future!

Dominic Update #4

It has been a good day. Dominic got steadily better at navigating the left leg / right arm life. His pain was managed. Between all the books, comics, and activities people have already sent him, and moving the Xbox to the living room, he never wanted for something to do, even if he had to be stuck with his foot elevated most of the time. He received visitors, including dear friends.

And at the end of the day he announced he wanted to go outside. Getting him and the wheelchair out the front door and down the steps of our front stoop is still our biggest logistical challenge, but we did it. Once outside he announced he wanted to go to Holy Cow for a burger. (He is very pleased that, since he needs protein, iron, vitamin D, and calcium, a bacon cheeseburger is literally what the doctor ordered). So, a day or two before I would have guessed he’d be ready, all four of us were heading down the sidewalk. And though he was pretty exhausted and his leg was sore by the end, it all went off without a hitch. Now he’s back on the couch, playing Fortnite with a friend, and all feels right with the world.

Some random thoughts:

These past few days, it’s been hard to settle my mind. My thoughts are constantly racing to the next logistical hurdle, or, even if I’m trying to quiet them, speculating wildly about an uncertain future. So much more of my time is taken up with attending to another person’s basic needs — it’s like being the parent of an infant again (except a little better since this is an infant who can crack jokes that make you laugh). But for us this is temporary. Think about parents whose kids have chronic conditions, or for whom life in a wheelchair is not a temporary setback but a permanent state of being. How do they do it? They are heroes.

I’ve also been thinking about how impossible all this would be for a family without a middle-class income. Not even thinking about the actual medical costs — at the margins, we spent well over $200 the past few days on things like parking, cafeteria food, multivitamins, random supplies for the house. Even if we lived in a world where your medical costs were sure to be covered regardless of your income — which we do not! — if you don’t have the wiggle room in your checking account to handle all that other stuff, it would make an already difficult situation even more stressful.

Finally … we were out of doors for a scant hour and a half today. But in that short time, walking down the sidewalk with someone in a wheelchair, helping someone with severe limitations use a bathroom in a restaurant (because it was an emergency!), has given me a profound new perspective on the ADA. Accessibility matters — I guess I knew that in the abstract, but now I’ve felt it.

Dominic Update #3

He is home.

The big moment in the morning was physical therapy, where Dominic learned how to use his right arm and left leg to pivot out of bed and into a wheelchair, out of a wheelchair and onto a step, then up three steps and down again, then back into a wheelchair. And we learned to help him, because, at least for now, he is a very long way from doing any of that by himself.

Imagine that your left arm is in a sling. It doesn’t really hurt, and it’s actually pretty flexible, but there’s a crack in your shoulder so you’re NOT SUPPOSED TO USE IT. Your right leg is still a bit swollen, especially around the knee, and jostling or bumping it can cause a lot of pain. It’s really best if someone else moves it for you, very gently, and holds it so it doesn’t touch the ground (even though it could). Your left leg is your real hero for leverage, but there’s some stitches in that knee too so it’s not really at 100% yet. How much do you think you could do on your own?

PT was great in that the (amazing) therapists were impressed by his determination, and cleared him for discharge. But it drove home one of the specific realities of “this is going to be tough” — that for the first couple weeks at the very least, he’s going to need at least one of us to help with sitting up, using the bathroom, getting into and out of his wheelchair, everything. That right leg / left shoulder combo makes it really hard for him to do things independently. And, for the first week, he’s supposed to keep his right leg elevated most of the time on top of it all.

Afternoon involved a lot of waiting around for test results, tackling the logistics of getting him home and making it livable, and making sure a wheelchair was delivered to the house in time. We live in possibly the worst sort of space for this — a 3-story townhouse where his bedroom is upstairs and the bathrooms are upstairs and downstairs, but not on the main floor. Oh, and he has a loft bed. So for the next few weeks he will be set up in the living room, where (thankfully) the couch is plenty wide and very sleepable. We got a portable commode so he doesn’t have to go far to do his business.

In the evening all the permissions were granted and documents were signed and we were allowed to take him away all by ourselves. It’s a little like leaving the hospital with your first child, when it doesn’t quite feel right that you’re even allowed to just take this thing home and care for it by yourself — you are clearly not qualified! And you drive home as patiently and carefully as you have ever driven in your life.

We pulled up to the house around 10pm and Ella was there waiting for us, sitting in his wheelchair with an air of impish insouciance. Getting him out of the car and into the house was just as difficult as we imagined, but it’ll get easier with practice. Once he was safely settled on the couch, we opened the many packages that had arrived for him. Some of the presents gave him so much joy that he started to cry. Actually that might have been me.

Earlier in the day, going over everything with the orthopedic RN, one thing became clear — with all the help he was going to need, and with only a few weeks left until summer anyway, he wasn’t going to be going back to school. He asked about that on the way home and when we explained it to him, it brought on his first moment of true, deep sadness in this whole ordeal. He’s really bummed that he’s not going to be able to be there, hanging out with his friends, in the waning days of the semester.

But, as we told him, his friends are welcome to come to him. As is, at this point, anybody who wants to pay him a visit. He’ll be mostly couchbound for a while so we’ll be home a lot — just call first to make sure it’s a good time. Come on by!

Dominic Update #2

Sadly, this is not the “Dominic gets discharged and arrives home!” update.

He slept great last night, and has been doing well with food and drink. With some help from the physical therapists he even sat up in bed. Turns out, if it wasn’t for the pain, he could totally put some weight on that foot, even walk, without risking damage to the broken bone. Benefits of a titanium rod holding it in place. In reality he won’t be putting weight on it for a good long time, but it still blows my mind to think that it wouldn’t be a big deal if he did.

The bad news: he did need more blood, which means 8 hours today having it fed in via the IV (it’s almost done as I write this). That in turn means no morphine to take the edge off when his pain spikes, unless he wanted to start a second IV, which, I can assure you, is an idea he would definitely not support. So he’s been in more pain today than the previous couple, though after a bad bit he slept for three hours, then woke up and devoured a cheeseburger and broccoli. He’s doing great now. Physical therapy comes tomorrow morning, so (fingers crossed) he is set free tomorrow afternoon.

Things that make me suddenly tear up these days:

  1. Sitting down to eat food that neighbors have brought by.
  2. Watching Dominic talk to his friends on the phone.
  3. Turning at the intersection where it happened.
  4. Standing near anyone else who is tearing up for any reason at all.
  5. Thinking about any of the above while driving to or from the hospital.

An Update about Dominic

I’m taking the old blog out of mothballs in order to have a centralized place to let people know what happened to Dominic and how he’s doing. This post will explain all the basics, and I’ll provide updates here on the blog over the next few days and weeks.

What Happened

First of all, so that the opening doesn’t cause too much concern, let me say: Dominic is going to be OK.

This past Friday, May 17, he was hit by car. He was crossing the street coming home from school. A passing school bus stopped to let him cross, but there was another lane, and a car in that lane passing the school bus hit him. He lost consciousness, but only very briefly. He lost a shoe. His violin case was cracked, but the violin survived. His backpack has a hole in it. There were people nearby to call 911, and EMS was on the scene less than two minutes later.

This was just down the street from our house, so it wasn’t long at all before kids were knocking on my door. “Dominic got hit by a car!” How do you respond to that? You put on flip-flops so you can rush outside. A second later you think, “That was dumb, I can’t run in flip-flops.” Then it turns out that you can. He was awake and surrounded by people when I got there. “Is this really happening?” he moaned. Faster than I could process it, I was with him in the ambulance.

A side note for those who live in Alexandria: the accident occurred where Ancell St runs into Commonwealth Ave. If you live near there you probably realize how very many people cross at that exact point every single day. Let the mayor and city council know that it is long past due for that intersection to have a robust crosswalk.

Nothing will test your faith in humanity as much as riding shotgun in an active ambulance and seeing how many people do not even get the hell out of the way, or are stupid or oblivious in a thousand other annoying ways. But nothing will restore your faith in humanity as much as walking into the ER trauma room of a children’s hospital and seeing over a dozen people — nurses, med students, social workers, doctors of every possible specialization — standing at the ready to figure out exactly what your child needs to be OK, and give it to them.

How He’s Doing

The best news is what Dominic doesn’t have. He doesn’t have head or neck trauma. He doesn’t have bleeding or other internal injuries. What he does have is a broken right femur — a complete but relatively clean break, midway — and a hairline fracture of the left shoulder. Plus three stiches in his left knee, and a wide assortment of other cuts, scrapes, and bruises.

We’re at Children’s National Hospital in DC. Saturday afternoon he had a 3.5 hour surgery to set his leg, and it was completely successful. There’s a titanium rod in there to hold it in place, so he won’t even need a cast. The shoulder won’t require anything other than a sling to make sure he doesn’t use that arm much while it heals. But the combination of the two is a doozy, because he won’t be able to use crutches. Recovery is going to be tough.

Now it’s Sunday afternoon, and when he’s on pain meds he is in very good spirits. He’s making up for twelve years of limited screen time by watching as many movies as he possibly can. Because his blood levels are low after surgery, he’ll be kept here for a third night in case they need to give him blood. Still ahead: physical therapy, getting discharged (hopefully tomorrow), figuring out the logistics of living in recovery. It will be an interesting plus or minus six weeks.

Through it all, family, friends, and neighbors have been amazing with their encouragement, prayers, rides, and food (please hold off on more food — our fridge is full!). Ella hasn’t just handled herself well through it all — she has been our emotional support. Over and over we say, “It could have been so much worse.” And we say, “He’s going to be OK.” He’s going to be OK.

Al Takes On Al

I thought Hamilton itself represented a brilliant synthesis of quintessential facets of the American experience  — seemingly incongruous parts that fit together perfectly. I had not reckoned with the fact that it might all get taken to another level.