I See You (Almost Ten Years Out)

This week marks the beginning of our tenth year since Sky’s autism diagnosis, which means it has been about eight years since I created Mom in Two Cultures. I don’t know how much this blog has helped others, or even if it has helped anyone at all, but here's what I want you to know, my fellow special needs parents:

I see you.

I see you planning and strategizing before every outing with your son or daughter. I see the time you put into trying to figure which combination of events are least likely to trigger a meltdown, planning your schedule down to the last minute, making sure your bag has the right mixture of fidgets, sensory distractions, and allergy-safe food. I see you when people judge you for handing your phone or a piece of candy to your son as a last-ditch effort to keep him from careening over the edge into a full-blown meltdown. And, I see you when all of your strategizing and negotiating fails and he tumbles over that edge anyway, tearing your shirt, hitting you in the face, running out into the street. 

I see you stumbling into work, bleary eyed and overwhelmed after wrangling your child onto the bus, following a morning that included screaming and refusal after refusal—refusal to get out of bed, refusal to put on clothes, refusal to eat breakfast. I see you as you try but fail to keep your voice even and your reactions measured because you know that losing your cool will trigger your daughter’s anxiety and make everything harder. I see you teetering at your own breaking point as you fight to keep your exhaustion and frustration masked just long enough to get him to school and yourself to work.

I see you up late night after night carefully composing emails to send to his teacher, his principal, his therapist, his doctor, his IEP team, as you struggle to figure out what has triggered the latest regression and how you can prevent the inevitable downward spiral that will happen as a result. I see you sending notes to teachers thanking them for their work and sharing with them the latest insight you gained from wherever it was that you gained it. And, I see you meeting the bus every day with an encouraging smile as you try to will your daughter through this tough spot and help her get back on track.

I see you on the phone with people who have never met your son but who think they know what he needs more than you do. I see you set your jaw as the person on the other end of the line tells you your daughter’s need isn’t great enough to merit services. Or that her need is too great to benefit from the services they offer. I see you wracking your brain to make sense of these two completely contradictory responses that sometimes happen within hours or days of one another. And, I see you on the phone fighting with the insurance company to cover what they’re supposed to cover or with various billing offices as you explain one more time the delays in payment. I see your eyes widen incredulously when the provider tells you they can’t accept your son after your yearlong wait on the waitlist simply because they don’t take your secondary insurance (even though they take your primary insurance). 

I see you constantly choosing which battles to fight and which battles to forfeit because you don’t have enough time or energy to fight them all. 

Stow coloring

I see you as you cry for your child who has been left behind by his peers, who plays at home alone instead of with classmates, who can’t handle the excitement of a birthday party or the uncertainty of a night away from home. I see your fear as you wonder how the other children will respond to your daughter’s overtures and burgeoning attempts to make friends. I see you as you try to comfort your daughter while you also try to explain which of her actions was inappropriate or annoying to the kids on the playground so that maybe she will have a better chance of getting along with others next time. 

I see how incredibly isolating it can all be.

I see you when you meet eyes with your spouse across the table while your child falls apart over dinner. I see how you look at each other knowingly but also desperately because neither of you knows how to make this better. I see you trying to protect one another from the confusion and the pain that is a real part of your day-to-day life. And, I see how guilty you feel for feeling that way about this child you both love so deeply, so fully.

I see you as you examine the bruises and scratches on your arms, your swollen lip, your disheveled hair and as you wonder how there isn't more evidence of the emotional and physical battering that this kind of parenting brings.

I see you comforting your neurotypical children as they cry about broken toys, broken plans, broken hearts. I see you as your struggle for words to help your neurotypical child to remain happy and hopeful despite the ways that life can be difficult and unfair. And, I see you worrying about whether your other kids are getting the attention they need and deserve.

I see you as you lie awake at night wondering how you will keep your child safe. I see you as you try not to think about the statistics, about elopement, about accidental drowning, about seizures, and about all the other terrifying things that are part of your life. I see you as you sit dumbfounded wondering how your child has slipped away again and paralyzed with the fear that comes with knowing that maybe this time you might not find him in time.

I see you fighting to make the best decisions for your child, knowing that you don’t have all of the information, that you might never have all of the information, but that somehow you have to make enough sense of what you know to get her the support and treatment that she needs to live her best life. 

I see you. I know it's hard. I know you are doing the best you can.

I'm sorry I can’t be there to fight with you, to worry with you, to cry with you, to drink and watch mindless TV with you, but I want you to know that I see how hard you are fighting to make it through every single day. I'm proud of you! You are amazing. Stay strong. You are not alone. I’m right here fighting with you.

Ten Words

"Stow, I got it. Just sit down and shut up."

On the bus ride home from school on the first day of October, Stow heard these ten words from the bus aide. The exchange was observed by another aide, reported to the principal, and responded to immediately. And, in the scheme of things, in a world where so very many bad things can happen to a kid, being told to shut up can seem insignificant. Somehow, though, this became the precipitating event to what has turned out to be another challenging fall.

I was there to meet him when he got off the bus that day because Ren was still very much in the throes of his post-op recovery and couldn't handle Stow on his own. When Stow got off that day, he explained that something bad had happened to a kid and that somebody was going to get into trouble and that it was ok because another grown up had dealt with it. It took three or four tries for me to get enough of the story from Stow to understand that the something had happened to HIM. Once I felt like I had a handle on the story--he was trying to help the bus aide on his special needs bus by telling her what to do and she told him to bug off--I sent an email to his IEP team. It was probably one of the shortest messages I've ever sent an IEP team.

Stow got off the bus upset because he says the bus aide told him to "shut up" and that he was annoying. Obviously, this is highly problematic, and we’d like to get to the bottom of what’s happened and the situation on the bus.  

Thanks,
Moe

Almost immediately, I got a call from the principal. He'd heard about the incident from the aide and called me as soon as his afternoon bus duty ended; he hadn't even had time to see my email. Our conversation was short. He assured me that they would act quickly to address the situation. Stow asked to talk to him, and when he did, the principal told Stow how sorry he was that someone had treated him like that and promised that everything would be ok.

I hoped and believed that it would, but fall has always been hard for the boys, and everyone who works with Stow knows how fragile his successes can be and how quickly he can spiral.

Day 1

The next morning, the aide was still on the bus. Sometimes things don't happen as quickly as we'd like. It took the bus company some time to find and review the video of the incident and then a little longer for them to find a replacement aide for Stow's bus. It broke my heart to see him get on the bus that next morning and to see the offending aide not even greet him. 

I tried asking him if it worried him to have the aide on his bus, and more than once, he said it didn't. I am sure that it's true that he didn't think it bothered him. But, what is also true, is that starting on October 2nd and for weeks now since, he has struggled behaviorally at school. Before the bus incident, he had day after day of truly positive behavior charts. In fact, not long before the incident, we'd met with his IEP to discuss scaling back some of his supports because he was doing so well. 

Stow rides the "short bus" because he finds it hard to manage the social aspects of the "long bus." On the long bus, kids get into conflicts and the driver yells. A kid like Stow can make terrible choices in that kind of setting, and the drivers aren't usually equipped to support a kid who struggles. Ironically, the very thing we were trying to avoid by having him ride the special needs bus not only happened but also triggered every anxiety he has about getting into trouble for trying to help. He can't articulate any of this; in fact, things like this remind us of how much of what he experiences/feels sits just outside of his ability to comprehend.

It seems unfathomable that something as little as this moment of impatience and a failure to self-censor could derail a kid so, but Stow's teacher and I both keep track of his behavior (because behavior MEANS things; it ALWAYS means things), and it has steadily worsened starting with the bus incident. At this point, we find ourselves in unchartered territory given the struggles he is having at school, and though his team knows Stow well, they can't figure out how to get him back on track.

This is autism, you guys. You figure out what works, and for awhile it works. Sometimes it works so well that you feel like you've unlocked finally cleared a level in the video game called Life With Autism. And, then suddenly, the littlest thing can send you right back to the beginning. For those of you out there dealing with these kinds of challenges or worse, hang in there! We’re with you!!

A Metaphor for Just About Everything

In the week leading up to the surgery, I started an 1000-piece puzzle that I'd bought after our trip to Colorado. As a fan of WPA posters of National Parks, I thought the puzzle would be a nice way to spend time with the kids during all the downtime and long periods of waiting that come with surgery and recovery. The puzzle turned out to be a total jerk, though, with purposely misleading shapes and impossible to identify markings. Friends who have done other WPA National Park puzzles later told me that this was a thing. I didn't know that when I started, though.

At the beginning

Soon, the puzzle became a pretty accurate metaphor of, well, of a whole bunch of things. It looked easy enough but was unnecessarily hard. On the outside, the puzzle seemed pleasant, almost peaceful, but on the inside, it was a jumbled, untangleable mess. Then there was the fact that I couldn't get anyone to actually DO the puzzle with me--not even Big Sissy who had come to help and who normally can't walk away from a puzzle once she starts.

In the end, I found myself obsessed with the stupid thing, staying up too late, drinking scotch, and watching Letterkenny, completely unable to walk away from it. And then, after working on it for hours, discovering I'd only managed to fit a handful of pieces into place. This went on for weeks. Ren's surgery came and went, as did his hospitalization. In the second week post-op, my brother came to help. Unsurprisingly, he also had no interest in the puzzle. As life post-op went on, I found myself stuck, making very little headway with it.

The state of the puzzle on the night before surgery.

Two and a half weeks post-op, on the night before school started for the kids and just over a week before my own semester started, I finally had a breakthrough with the puzzle. Sure, I stayed up too late and watched way too many episodes of Riverdale, but by the time I crawled into bed around 1:30, it felt like the end was in sight.

The next morning I woke up feeling more positive than I had in awhile. When Ren came rolling out with his walker, I said, "Look at the puzzle! I think it's really coming along" Pink was the first to ask me if I was being sarcastic. Ren just kind of stared at me.

Noooooooooooo!

You guys, I feel like I've become pretty good at taking a lot of things in stride. But, when I saw what the cats had done to the puzzle, my brain kind of short circuited. On the outside, I looked utterly calm and unconcerned, but in my head, I was sure this was the final sign that all hope was lost.

In a rare moment of insight, Ren and the kids seemed to know exactly what was going on even though I didn't say anything. Pink and Stow set about trying to fix it, and when I told them to just put it into the box, they did so as gingerly as possible. Ren encouraged me not to give up and suggested I keep going despite the setback, but I knew I didn't have the time or energy to do it all over again.

Waiting with the kids for the bus, I texted my brother to tell him what had happened. He asked if I planned to try to fix it, and when I said no, this is how he replied:

"Then I should probably tell you about the piece I took out and hid from you now?"

"It's in the top drawer of your coffee table...I couldn't resist...Sorry (not really)."

Suddenly, the puzzle became a whole new metaphor. It turns out that no matter how old you are, you can never escape the antics of your older siblings. Worse? Ren saw my brother hide the piece, making him an accomplice to this particular crime. Had I gotten to the 999th piece and found the last one missing, I would've been pretty upset. Had I then learned that my brother and the spouse I WAS SPENDING MOST OF MY TIME HELPING RECOVER FROM A SPINE SURGERY were pranking me, I'm not sure it would have ended well for Ren. As it was, I asked Ren why he didn't tell me about the puzzle piece. "I completely forgot about it," he said. Given his level of pain and the meds, I guess I could buy that.

I added the missing piece to the box and tried to forget about the puzzle.

But, I couldn't seem to let it go, and I found myself feeling more aimless and isolated than I had before the CATastrophe. It was about this time that the puzzle became a metaphor for not giving up and for trusting friends because the next day one showed up with a puzzle keeper and a few hours of free time and worked on the puzzle with me until it was almost back to its pre-cat state.

Almost back to its pre-CATastrophe state

A few days later, I put in the last piece. Only, it turns out it wasn't the last piece because, this puzzle wouldn't be a useful metaphor if it wasn't STILL MISSING THE PIECE IN THE VERY MIDDLE. I told my brother who swore that he hadn't taken two pieces. Knowing how much he revels in being the source of my unhappiness, his lack of glee convinced me he was telling the truth.

999 pieces

In Japanese, there's this phrase shikatta ga nai which comes in really helpful at a time like this. I mean, what was I going to do about it? Somehow over the weeks of the puzzle sitting in the middle of a high-traffic area, a piece disappeared. I looked for it, of course, but it was gone. So, I did the only thing I could do; I rolled up the puzzle and stood it in the corner of my bedroom, assuming that one day we would either find the piece or I would give in to the idea that 999 pieces of an 1000-piece puzzle was indeed the perfect metaphor for my life.

The 1000th Piece

In the end, though, I guess I don't know WHAT the puzzle is a metaphor for because once Ren started feeling okay, and once he started helping with cleaning and decluttering again, he found the missing piece at the bottom of an empty sanitary napkin box that Pink has been using to hold her colored pencils.

There. Analyze THAT!

The Alpine Slide

Remember how I said I was going to get the kids to the mountains this summer if it was the last thing I did? Well, we made it, and it went about how you'd expect it to go.

There were the meltdowns and freak outs that come with any change in routine, and, like usual, Stow was ready to head home after 72 hours away. Still, I had a chance to hike and canoe and breathe mountain air with the kids, and that was pretty amazing.

Canoeing on Grand Lake

We landed in Denver and picked up a rental car that all three kids disliked because when they sat in the back their bodies touched. "Why didn't you get one of those big SUVs?" one asked. "This is a vacation," chimed in another. "Why do you have to be so cheap?" Three minutes into our drive from the airport, Sky wanted to know exactly when we would see our first mountains, and Stow wanted to know when we'd be stopping for lunch.  Fortunately, once we hit more mountainous terrain, all got distracted by trying to determine the types of rocks and outcroppings they were seeing (score one for just enough geology knowledge to keep them occupied!).

We spent our first night in Estes Park in a tiny motel with magnificent views and a place to build our own campfire (which went ok until Stow became increasingly brazen in his efforts to show us how well he could snuff out the tiny side fires he kept lighting). Sky fell in love with the mountains around Estes Park and the shirt he bought as a souvenir there (this last piece of information may seem random, but it will make more sense in a minute--I promise), and he was sad when we headed into the park and across Trail Ridge Road to our second destination.

Stop along Trail Ridge Road

Since Ren couldn't really hike, I was pleasantly surprised by all we could see and do as we made our way across Trail Ridge Road. The short hikes we could take from various stops and the wildlife we saw along the way thrilled the kids, even as I knew that a younger more mobile version of myself would have ridiculed people like us for being such lazy tourists.

We spent the bulk of our vacation in Grand Lake, the small town where I worked for a summer as a college kid. Sky didn't like it because it wasn't Estes Park, and Stow didn't want to leave our rental cabin because it had a bunk bed and cable, and we'd been away from home for 72 hours so clearly this was our new home. (Have you ever tried explaining the difference between being on a trip and being "homeless"? Because, it's not as easy or as obvious as it sounds.)

Grand Lake and Stow

On the fourth day, we drove to Winter Park where we bought ridiculously expensive day passes so we could enjoy the gondola, alpine slide, putt-putt golf and other activities. Day four is where the trip really started to take a Moe Family turn. We went to Winter Park so the kids could ride the alpine slide (described as Colorado's longest alpine slide with "over 3,000 feet of heart-pounding track"), but the alpine slide requires a ski lift ride, and a ski lift ride for three children, two of whom are on the spectrum, requires, at least at first, two adults.

See the conundrum?

The guy selling the day passes told me that Ren couldn't ride the lift up unless he was willing to take the slide down. He also told me that Ren's spine issues wouldn't prevent him from riding the slide. When I conveyed this information to Ren, he decided it was a perfectly cogent idea for him to take the lift up with Stow and to ride down on the slow track.

On this first trip, Sky led the way followed by Pink. I took the middle with Stow behind me and Ren bringing up the rear. Everyone made it down safely, though I think I probably triggered an adrenaline rush for Pink when I nearly rear-ended her. And, I am sure the group of teenagers who came behind Ren weren't thrilled by his snail's pace.

Alpine Slide

Yay! We made it down safely and the kids had fun!

The logical next step would have been to walk away from the alpine slide. But, our passes were for limitless rides, and we're nothing if not passionate about getting the most for our money. So, I told Ren I'd take the kids on the slide again.

"I'll come, too," he said.

When you live with someone who has a life-altering and painful physical disability, you learn not to tell them how you think they should live with that disability. So, even though I really wanted to tell Ren to quit while he was ahead, I didn't want to stop him from something he felt like he was capable of doing.

My second ride down the mountain was faster and more exhilarating than the first. As each family member arrived safely at the bottom, I felt buoyed by the fact that we were doing something so....well....so normal. But, then Pink came in with Ren close behind, and before she could tell me about his spill, the attendant at the bottom of the slide was explaining how to get to first aid.

Do you know what's hard to do if you have a titanium rod from neck to tailbone? Bend. Bending is impossible and also completely necessary if you get going to fast on the alpine slide and need regain your balance. Since Ren can't bend, when he started to tip, he couldn't recover without relying on contact between his arm and the side of the slide. Today, three months later, he still has slide burns--they're healed, but the scars look like no other injury we've seen.

When we got to the first aid tent, my biggest worry was that the open wound on his arm would prevent him from being able to have surgery. The nurse gave us some petroleum jelly and some bandages and told us how to keep the wound clean and moist for quicker healing, and after a few gondola rides and a round of putt-putt golf, the kids decided they were ready to take on the alpine slide on their own.

On your second visit to the first aid tent, you know it's time to walk away from the alpine slide. While Ren managed to get a shallow slide burn that covered most of his forearm, Sky got a small deep one on his shoulder that closely resembled a golf divot. The Japanese last name I gave the nurse when we arrived at the tent the second time made her raise her eyebrows, "I thought you looked familiar," she said to me. Armed with more petroleum jelly and clean bandages, Sky and I found the rest of the family, and we all agreed it was time to head home.

"I can't believe how unlucky I am," moaned Sky, who was distraught about the hole in his new t-shirt, and whose day had been ruined by that last ill-fated alpine slide run.

Ill-fated shirt

"Look," I said. "Don't let that one moment ruin a really good day. I mean, it WAS a pretty great day, right?" Reluctantly, he agreed.

I suppose our trip to Colorado taught us all that every day is full of a lot of good and a little bit of bad and we that can choose which of those things will be our focus--

--which isn't to say that I didn't have to spend a chunk of the last few days of our vacation looking for a shirt to replace the one with the hole, because I totally did.

Reset

Oops. Apparently I wrote this and forgot to post it. That tells you how things have been going...Anyway, here's something from August 19th. I'm working on an update. Promise.

*****

It has been two weeks since Ren's SEVENTH spine surgery. In the weeks leading up to it, I felt an overwhelming sense of dread that I haven't had before the other surgeries. I mean, I've never looked forward to them, and I've always gone through a process of being angry and sad about what was about to happen, but this time, I just couldn't shake the feeling that I just didn't want to go through this again. For weeks, I thought about it, but I couldn't quite put my finger on why this one felt so much worse than the others.

Then, the morning of surgery, as we went through the various steps of pre-op--helping Ren get disinfected and dressed in a paper gown; watching as he was hooked up to heart monitors and put on an IV; talking to the anesthesiologist and the surgeon; waiting, waiting, and waiting some more--it started to dawn on me that we were about to hit reset on our lives once again.

When Ren has a surgery, it's a bit like getting killed when you're trying to make it through the level of a video game--you die and then you have to start again. This time, we'd made it longer between surgeries than ever before, and I didn't want to start over again.

The first spine surgery was March of 2012, and this last one was August 2019--seven years and five months between the first one and the last one. Seven spine surgeries in seven years. But, this time, you guys. This time, we made it for 742 days--just over two years! I really thought we had finally completed the spine surgery level of this video game of our lives.

The new hospital rooms had smart boards. "Get well soon!"

Instead, we find ourselves respawned once again. Going through the same level over and over again has taught us some things. We generally know what to expect with the surgery and post-op. Each time, we gain some new skills. This time, for example, we made sure to get all of the assistive devices out and ready before going to the hospital, and I even remembered to get his post-op prescriptions filled ahead of time. Knowing that I would be homebound and essentially unable to do work while caring for Ren and the kids, started working on a puzzle that I knew would keep me both distracted and present for everyone. None of these are earth-shattering changes, but they are things I didn't do for previous surgeries because we were in denial about what was to come.

Having new skills and knowledge to draw from for each surgery is a blessing and a curse, though. This time, more than ever, we understand that the respawning can be unpredictable and sometimes pretty traumatic. Some surgeries, we respawn really close to where we were pre-op, so the way forward is clear. Other surgeries, we've been sent back to the beginning of the level and had to work out a better way through the obstacles we encountered there.  And, last surgery, we got respawned into a place we'd never been before.

Hardware removed from Ren's spine.

I get that this is a terrible metaphor and probably even worse if you don't know the first thing about gaming. But, the point is that each surgery takes us out of the game and the puts us down somewhere unexpected or unfamiliar, and then we have to figure out how to get back into the game and make forward progress. At this point, it feels a lot like an exercise in futility. And, it reminds me why I stopped gaming.

*****

Last surgery, we were respawned into a world of medical complications that took us months to traverse and untangle. For weeks, I wasn't sure if Ren was going to be ok. He remembers nothing from the first two months after that surgery. This surgery has put us into an equally bewildering place. This surgery, Ren has had the fewest complications of any surgery thus far. Surely, this is because we spent a lot of time talking to the surgeon and the anesthesiologist to troubleshoot what went wrong last time. The surgeon has also continued to improve his procedures based on the latest findings, which I am sure also helped. Not since the first surgery back in 2012 have we respawned into a world where Ren has less pain than he did before surgery. We are, of course, very thankful. We still have four more weeks of no driving and ten more weeks of no bending, twisting, or lifting, so we aren't out of the woods, yet.

It's nice that no one has needed to go to the ER in the past two weeks, though.

Long Recovery

I had a dream last night that Stow was having a meltdown and Ren, misunderstanding my request, picked him up in an attempt to help get things under control. Stow weighs well above Ren’s 40-pound lift limit, so picking him up caused Ren's broken rods to fold upon themselves, leaving him in a tangled heap on the floor. A couple of days before his 2017 surgery, I had a bright and airy dream in which the procedure was over in the blink of an eye, and by the time I got to Ren’s hospital room, he was standing tall and unencumbered, grinning at the reflection of his restored posture. The dreams I have the week before surgery are never subtle.

Ren comes around slowly after surgery; he can sometimes spend three or four hours in recovery. Sitting in the waiting room, long after the scheduled finish time, long after other families have come and gone and come and gone again, long after the doctor meets with me in the tiny consultation room, so small that our knees almost touch as he tells me things went as well as they could have, the gravity of what lies ahead always hits me hardest.

At some point, the nurses call for me because they can’t wake Ren, and they think that, somehow, his waking has gotten lost in translation--as if he doesn’t realize he’s supposed to open his eyes already. The thing is, though, I don’t want to translate here; I don’t even want to be here. What could I say to Ren that they haven’t tried already?

The recovery room lacks anything that might give even the slightest hint of homeyness or comfort. Sterile and all hard, shiny surfaces and white sheets with beeps and drains and businesslike nurses, I feel most lost there, as I look down at Ren, who is pale and non-responsive and whose sleep apnea repeatedly triggers alarms. Since I can’t really process the sights and sounds of Ren’s incapacitation, I focus on the the feet of nurses in the recovery room and wonder why they always seem to be wearing Crocs. Why is it always Crocs?

The first major surgery Ren and I went through together--a revision surgery following a serious shoulder injury--we’d been married just three weeks. It was his third shoulder surgery in six months and was done at a hospital two hours from where we lived. In my tiny tin-can of a car, I found myself commuting on unfamiliar roads, barreling along the highway at speeds my car wasn’t meant to go. Pre-GPS and cell service, I had to memorize the exits and back roads that got me to the hospital with the impossible-to-pronounce name. And, once there, I had to remember how to find my way through the snaking, maze-like hallways to Ren. Even now I can see the farm fruit stand that marked my first turn off the highway and the onsen center--named (puzzlingly) after Confucius--just before the turn that led into the hospital. I don’t remember what I did while I waited for Ren’s shoulder repair to be complete, but I do remember being brought into the recovery room only to find Ren lying naked on a gurney covered by a single towel. Unconscious but in pain, he cringed and squirmed, and it became clear to me that my job was to watch over him and his towel. 

Nineteen years and ten surgeries have passed between then and now, but I know come Monday, when he has his seventh spine surgery, I will find myself watching over Ren as lost as I was that first time. I will find myself, once again, feeling like I have no idea what to do; feeling like I want to fall apart, but knowing that if I don’t keep it together on that first day, there’s no way I will make it through what comes next.

I know I am not the first person to go through difficult medical situations with a spouse. I know that there are people all around me who care and who want to help. I know that each week we get further beyond the day of surgery will be a week closer to reclaiming some kind of normalcy. But, I also know no one can do this for me, and there’s something impossibly lonely and isolating in that.

My Heart

I am sitting in the cramped hospital room watching the nurse keep her eye on Sky's vitals. His heart rate keeps falling and setting off an alarm. She tells me not to worry, that the medications they used during his procedure just worked a little too well.

Procedure. I've always hated this word in reference to something being done to a human body subdued by anesthesia. All week Sky and I debated the line between surgery and procedure. Now that he's a teen, we don't agree on much, but we both agree that if cutting and repairing are involved, it should be called a surgery.

"Besides," he says with a grin, "I want to be able to tell people I had heart surgery this summer."

This is out-patient, 2 or 3 hours under general anesthesia in order to thread a catheter up to his heart and put a roadblock in the spare electrical pathway that keeps causing it to race. It doesn't matter to me what they call it; the pre-op process and the time spent waiting for updates from the surgical theater are more than enough to trigger memories of so many surgeries past. Ren and I get out long enough to get some overpriced, ridiculously-healthy, oddly-paired food at the "Asian" salad bar, but soon we are back and waiting in the room that suddenly seems cavernous now that Sky's bed has been rolled away with him in it.

When the nurse calls to tell us all is fine but that they have to cross into the left atrium, I thank her for the update and then try to focus on the tiny tennis ball high on the tiny TV screen. It's the first round of Wimbledon, and we don't get cable at home. Ren wants to know who called and what they wanted. I find it hard to explain in Japanese as my anxiety rises in my chest and settles in my throat. I know that crossing to the left increases the risk of dangerous clots and stroke.

The room has no windows, and I have to traverse a maze of hallways in order to reach one. The prospect of tracing my way back to the sunlight seems particularly daunting, especially since the hospital lobby is a dizzying combination of cows and farm theme and old cars. I'm at a loss as to how to keep my shit together. This surprises me given the vast experience I have with hospitals and surgeries. Ren barely takes his eyes from his iPad. Apparently his coping strategy works better for him than mine does for me.

And, then, suddenly, it's over and the doctor comes in and explains what he did before we're asked to wait for ten minutes in the hallway while they get Sky settled in his room. Twenty minutes later, we are still waiting, so I knock on the door. The nurse says that most parents don't handle seeing their kinds on breathing support well, but she knows how many surgeries we've been through with Ren and tells us we can come in if we're ok with it. I'm more ok sitting with Sky than I am in the hallway with strangers, so I tell her we'll be fine. Like Ren, Sky comes around slowly after anesthesia, and it takes his body even longer to deal with the various meds on-boarded during the surgery.

The lighting in the room sucks--our options are a massive, blinding fluorescent ceiling light or  a depressingly dark headboard light. We wait for Sky to wake in near darkness while tennis continues on the television. When he finally opens his eyes, he wants to know if it's done. He wants to get out of bed. He wants to watch something else on TV. He switches to National Geographic, some show about the Sphinx and the Pyramids. He's still trying to watch it when they come in to do an echocardiogram.

I often wonder if I am doing right by my kids, by Sky, who is my oldest, my practice run, my test case. Every phase he enters, every new challenge he faces, I am doing it with him for the first time. Most of the time, it doesn't go smoothly and I am convinced I am blowing it. But as I watch them track his heart on the screen, I am transported back to the first time I ever saw that heartbeat. Back to that moment fifteen years ago--before I had a baby, before I learned to doubt myself so deeply--when I was simply awed to see that life growing inside of me. Watching Sky's heart beat so perfectly on the screen I am flooded with gratitude--gratitude that I've been able to hold and to love and to protect and to help grow this heart in this boy.

It's his heart, but as I look at it in the darkened hospital room, I realize that it is my heart, too. It always has been.

My heart four days post-op.

On Writing...

Thanks to a kind friend, I had the chance to participate in a writing workshop and think about my fiction writing for the first time in a really long time. The workshop combined illustration and creative writing, and by the end of the day, we had the starts to several stories and a pile of illustrations we'd drawn.

Two panels from a 4-panel comic

I've never been able to stand having my writing read aloud. When I wrote one-act plays in college, I had to leave the theater when my plays were being performed, and when I was asked to do a reading of my prize-winning short story, I could only manage to read the final paragraph to the expectant audience. Yesterday was no different. I suspect most everyone else read aloud over the course of the day, but I just couldn't do it. Seems we grow as people in some ways and not so much in others.

All of our writing was based on the prompts we were given, and we were told to start each story with "I am....." (which goes against every instinct I have). In the time allotted for each prompt, we could produce just a few paragraphs at most. Below is a sampling of what I wrote during the workshop.

The prompt was a photo with this sign and the phrase "I wish you wouldn't have mentioned that." This is what I wrote:

   I am driving through a desolate stretch of eastern Nebraska in February. The man I've picked up looks down as we pass a sign that says, "Hitchhikers may be escaped inmates."
   "Shit," I think to myself, "figures."
   "So, what's waiting for you in Seattle?" I ask, pretending not to see the sign or his reaction.
   He doesn't seem to hear me at first, but then comes to life. "My daughter."
   I'm silent then. I figure the questions tumbling through my head are ones I shouldn't ask. Maybe he doesn't know the answers to them, or, worse, maybe the answers are too hard to face. I weigh my options--if he's an escaped inmate, I should keep things light.
   "I have a daughter, too," I say finally, even though I am single and hate kids.

The prompt for this one was simply "substitute:"

I am sitting at the kitchen table late at night writing and rewriting an email to Mrs. M. Though she's been my son's teacher for weeks, it only now occurs to me that I need to reach out to her directly. The house is quiet, the kids long silenced by the deep sleep that follows the meltdowns and the chaos that come with dinner, and breakfast, and playtime, and homework, and just about every waking moment in a house with autism. 

The fridge hums quietly behind me, and I'm surprised to find I miss the drip, drip, drip of the faucet that kept me company for so many late nights the first five years of our lives in this house. Sometimes fixing things leads to more loss...

The prompt for this one was "stitches":

I am staring at the wall, my back to him so I don't have to think about the 100+ staples that look like a zipper holding him together from the base of his neck to the tip of his tailbone. If it came unzipped, would his insides spill out? I know the answer to this question, and yet, it plagues me. The human body isn't meant to be split open this way. When I turn, I can hardly see him across the room since the rented hospital bed sits pressed against and lower than the queen size bed we haven't shared for weeks now. The pattern of his breathing tells me he's awake, even though he's silent, eyes closed. 

It occurs to me that I need to learn something from all of these spine surgeries and the seemingly interminable post-op recoveries. But, mostly I've learned that I hate stitches and staples and drains, and I worry that my hate for those things is morphing into a hatred for him. 

The prompt for this one was "cars":

I am sitting in my driveway waiting for Jeff to get in. He needs a ride to town but thinks he might be too tall for my tiny car. I wonder why in the hell he's in Japan, then. I also wonder why I've left work and come to meet him when I could be on my bike riding away from him, from this town, from myself. Even now, I don't know how I ended up here in this small mountain village where everyone knows my name; knows my habits; knows what I bought at the grocery last week; probably knows what I ate for breakfast and even what I'll eat for dinner, though I don't yet know that myself, yet. 

Before the car that is too small for Jeff, I biked and bussed everywhere--no train in this forgotten hamlet. But, the bus is stressful on these mountain passes. On winding one-lane roads with no shoulder, it's easy to find yourself playing chicken with a bus. Much harder is backing your way down the hill...

A portrait of myself as grapes.

*****

Needless to say, I didn't finish any of these stories, and I am not sure I will. Still, it was good to spend a day thinking about writing (though the drawing part was much harder). It reminded me of the ways in which putting things onto paper (or the screen) helps me process, even if it has nothing to do with what's happening, even if it's total fiction. As we head into a couple of months of surgeries and travel and who knows what else, I especially appreciate these reminders.

Here's a link to a future date of the workshop.  Hopefully you can catch it somewhere!

The Heart, It Races

"Let me start with the takeaways," the pediatric electrophysiologist began. "There are two big ones. First, this won't kill you. Second, it won't go away unless we intervene."

Supraventrical tachycardia (SVT). Thirteen months (and just 81 hours) after I got home from a work trip to Japan, we finally had an answer to the inexplicable heart thing that has been plaguing Sky. Getting to the diagnosis was a combination of frustrating waits and missed symptoms and a last-minute act of, shall we say, well-timed disobedience.

SVT reading

It started early last summer when Sky came in from basketball on the driveway reporting that his heart fluttered and he felt like he was going to pass out. Because the symptoms coincided with a significant growth spurt, we figured that it was a one-off. When he reported similar symptoms once or twice a month for the next couple of months, I reached out to our pediatrician, and she ordered an EKG. The normal report was both reassuring and frustrating, especially for Sky, who wanted to know why his heart felt so funny. Two different pediatricians told us that his symptoms most likely resulted from his rapid growth and dehydration.

In the spring, when we were in to see Ren's cardiologist (that's a whole other story, btw), I described Sky's symptoms and asked what he would advise. He suggested an echocardiogram and a 24-hour Holter monitor. We followed through with both, and both came back essentially normal. By now, Sky was getting anxious. He worries about a lot of stuff a lot of the time, and the unilluminating test results made him feel bad.

You've probably noticed that life tends to be chaotic around here, so three "normal" test results sent Sky's heart issues to the bottom of my concern list. He continued to get light-headed easily and to have heart "spasms" from time to time, but since we'd been multiply assured that there was nothing wrong, I wasn't sure what else to do. Then, the week before I left for a 12-day work trip to Japan, Sky started tennis camp. On each of the four days, he had increasingly concerning issues with his heart, ending on the fourth day (a Thursday) with him going temporarily blind. I contacted our pediatrician and Ren's cardiologist early Friday morning. By the end of the day, Sky had a do-not-exercise restriction.

Some problems seem unsolvable, especially when it's Friday at 4 pm and you're leaving before dawn the following Monday and you're not established with a pediatric cardiologist and the local pediatrician has just left the practice. Fortunately, we have a pediatrician back in Indiana who sees the kids once a year and who is amazing in all sorts of ways, not the least of which is that she doggedly pursued Ren's cardiologist until we had a plan and means to get Sky hooked up to a 30-day monitor. It took a few middle-of-the-night phone calls from Japan (sorry, travel mates, I know I was being a bit loud), but we got Sky set up with both the monitor and someone specializing in pediatrics to keep an eye on its readings.

Summer in Tohoku--my job's pretty awesome (#breathedeep)

By the time I got home in the early morning hours of Saturday, Sky had been wearing the monitor for four days and off of sports and exercise for two weeks. He was frustrated because he hadn't been cleared to go back to tennis (we were told the doc wanted a baseline before he did), and he was worried we were wasting time and money on the monitor (this is a huge thing for him, despite our constant reassurances). Given the haphazard way I'd strung together the medical coverage for this, I imagined that the lack of response from the doctor had much to do with the fact that Sky wasn't actually anyone's cardiology patient.

So, I made a decision that would turn out to be either brilliant or catastrophic (did I mention how HARD parenting is?)--I sent him to tennis on Monday morning with strict instructions to stop and record anything amiss. I also sent messages to both the pediatrician and Ren's cardiologist letting them know I'd done this. Sky and I both knew the weird heart thing wasn't going to happen as long as he was sitting around chatting with friends on Discord.

I dropped Sky off at 9, and by 11 am, I had a call from Ren's cardiologist's office telling me that he needed to stop whatever he was doing immediately. Within an hour, we had an appointment scheduled with the pediatric cardiology specialist for the next morning (an appointment I'd been told wouldn't be able to happen until August at the earliest when I called from Japan).

Summer Midwestern Sky (#breathedeep)

So 13 months and 81 hours later, we finally know why Sky's heart "spasms." We are trying to wrap our heads around how we got here and exploring the various available interventions; fortunately, the condition seems highly manageable. Sky is back at tennis this morning, and I am reminded of my mantras: "Breathe deep," and, perhaps less inspiring but still extremely helpful, "Everything will be ok."

After the appointment, I took Sky for pizza and a little shopping. Not sure Taro approves of Sky's purchases, but I think if you can match the ties to the eyes, you're doing something right!

Taro is not amused.

Forest Bathing

The summer I was 20, I lived and worked at a youth hostel and retreat center in Grand Lake, Colorado. An Indiana girl, I had before then only ever dreamed of living in the mountains. I spent much of that summer in Colorado wondering why I was born in the flat land of corn.

The job required me to spend three out of every five days running the registration desk, cleaning toilets, and cutting vegetables (not all at the same time, obviously). But, the other two days, I was free to roam, and little by little, I covered most of the western side of Rocky Mountain National Park, walking alone for hours surrounded by rocks, trees, and bodies of water whose grandeur was a constant reminder of how small and insignificant my life was next to the vastness of the universe and the expanse of geologic time.

My days on those trails were spent encountering unexpected wildlife and discovering new vistas around every turn. In the mountains, I was completely present. Everything seemed clearer. I felt like I could breathe for the first time. I left that summer in the mountains restored.

Me, Colorado circa 1992

One of my good friends from college spent the same summer at Ghost Ranch in New Mexico. In those pre-email days, I was a fervent letter writer, and she was one of my most reliable pen pals. I wrote about my anguish at knowing my time in those mountains was limited since, come August, I had to go back to the stifling humidity and relentless flatness of the Midwest. She wrote back, "Breathe deep the mountain air and save it for the rougher days."

I'm not sure I've gotten such good advice before or since.

Back at college, I tried to live by those words and draw upon the lessons I learned during those hours alone in the mountains. And, when the last reserves of mountain air seemed to leave me, I drove along the lonely country roads of rural Indiana searching for any vista that could appease my wandering soul.

I've had chances to be in the mountains since then. Ren and I met and started dating because of our love of hiking. For three years I lived on the side of a mountain in rural Kyushu and rode my bike along rivers and rice paddies. I spent weekends with Ren exploring Kuju and Aso and Kirishima. But, our struggles with autism and allergies and the (god forsaken) spine have left us landlocked in a barren landscape. It's hard to imagine hiking and biking and camping given the set of challenges we face, and it's even harder not to feel completely hemmed in by the fears that these challenges bring. But, it has also become abundantly clear to me that I need the mountains and woods like I need the air in my lungs.

*****

Just after sunrise at camp.

As things have fallen apart the past few weeks, I've felt myself drawn to the woods (flat though they may be). Walking along creeks or lakes in the early morning or evening, I try to find some of that "mountain air" that makes it possible to breathe.

In Japan, they acknowledge the restorative power of nature by emphasizing the importance of "forest bathing" (shinrin yoku). Forest bathing highlights how simply being in the woods can heal our souls.

Sunset at camp.

I've started taking the kids with me when I walk or bike. It seems they could use some restoration, too. It thrills me to see them drawn to the trees and streams and rocks. They haven't lost their ability to let nature speak to them.

Near home.

We had already started planning a two-week road trip out West when we learned about the broken rods, so yesterday after we got home from the surgery consult, I had to tell the kids the trip was off. Their responses were quick and unfiltered; they were angry and sad and scared. They wanted to know why they have to spend so much of their lives waiting for their dad to have surgery or waiting for him to recover from surgery. They wanted to know if we would ever get to go to Florida or Colorado or Hawaii or any of the many places their friends visit in the summer. They worried about starting middle school and high school less than two weeks after the surgery. They know how much life turns upside down when Ren has surgery, and they were worried about what this seventh spine surgery would mean for all of us.

Whereas with previous surgeries, I could convince them (and myself) to look on the bright side, this time, I found myself at a loss for words. They're right. This is scary and unfair. None of us deserves this.

Near home.

Today, I decided we'd go to the mountains anyway. It will be a shorter trip, and we will have to fly instead of drive. I'm trying not to worry about the cost of it as we head into another avalanche of medical bills. Maybe forest bathing is what we need to get us through this time. I don't know, but it's certainly worth a try.

"The mountains are calling and I must go." 
John Muir

Nerf Karate Panda Party

Stow has been talking about his birthday party for months. He kept suggesting grand plans that sounded, well, hard. And, expensive. He wanted to go to Great Wolf Lodge (So. Overpriced. Also, no way am I spending the night at a water park with other people’s kids. I know my limits!). He wanted to go to Chuck E. Cheese (This is my wish for you, dear blog reader; may you never, ever have to do a party at Chuck E. Cheese). He wanted to do a swimming nerf party (Gah! Water, water everywhere, and not a drop to, well, you know. Plus, the last time we tried to do a swim party on his birthday, it was cold and rainy and everyone ended up inside watching a movie they’d all already seen).

“Let’s have a karate party,” I suggested more than once, but Stow resisted the idea. The anxiety Stow developed during the basketball season had carried over into karate, and he missed a lot of lessons during the winter. This made it difficult to help him get back into the swing of it. For weeks, I'd been kicking myself for not anticipating the ways that changing his karate routine might mess up the awesome vibe he'd developed there.

Two equally compelling reasons drove my persistence with the karate birthday party suggestion, though. First, it would be a cheap and easy party. They provide the karate instruction and the space as well as a free (!) month of lessons for each kid, and all I had to do was bring food and decorations. After a long semester and a fifth-grade campout, I couldn’t imagine a better way to manage a birthday. Second, I hoped having a party at a place where he’s been successful would give him confidence and maybe even reignite his passion for karate.

So, I enlisted Pink’s help. Whenever the topic of Stow’s birthday party came up, she knew to casually say, “A karate party would be so cool! I wish I could have one.”

Up until two weeks before his birthday, Stow continued to change his mind about his party. He wanted a shopping mall party (???), a movie theater party, a Build-A-Bear party. It seemed that every encounter in his life held the potential of being the world’s best birthday party.

As he started to finally settle into and do well at karate again, I decided to ask one last time.

“What would be your favorite party ever?” I asked him on our way home from a karate class.

“A nerf gun panda party!” he replied, without missing a beat.

“Well, we can’t do a nerf party at our house, but I can ask about doing that at the karate place.”

“Yay!” He replied.

And, so finally, he agreed and we found ourselves hosting the first (and probably last) ever Nerf Karate Panda party:

Nerf battle.

Makeshift panda cupcakes.

Party favors--Panda sleeping masks.

And, it turned out to be a perfect little party. The kids had fun. It was low stress for me. Best of all, many of the boys said it was their favorite party ever. The only downside?

Finn. He's been following me around the house ever since the party, staring at me with his flat affect and soulless eyes, oddly stiff arms and legs that don't entirely bend at the waist...Every time I turn around, there he is. It's hard to get things done when Finn stares at me like that. 

A Thousand Tiny Cuts

I wish I could say that Ren and I have come to terms with the spine news, but we haven't. I wish I could say that my powers of positive thinking and spiritual beliefs have helped me know it will be okay, but that's not true, either. Instead, in the down time I've had between the fifth-grade camping trip, Stow's "Nerf Karate Panda" birthday party, and various graduation activities this weekend, I've been mentally composing a list of the thousand tiny cuts that threaten to do us in. 

So, I made a table. I know it's lame and that you probably don't even care, but I feel like someone needs to keep a record, a record that will either tell of our amazing ability to persevere and overcome or one that so clearly maps the detours and road blocks along the path to our demise.

September 2009	Moe starts as teaching fellow at small liberal arts college.
December 2010	Sky formally diagnosed with autism after extensive testing; Pink is diagnosed with a severe peanut allergy.
March 2011	Pink is diagnosed with other food allergies.
May 2011	Stow is born.
May 2011	Pink is hospitalized and receives asthma diagnosis.
September 2011	Ren’s back goes south on Sky’s first (and Ren's last) ever Cub Scout camping trip.
March 2012	Ren has his first spine surgery (a lamnioplasty) in the lumbar spine.
March 2012	Moe accepts position as a Visiting Assistant Professor at the same college.
May 2012	Moe successfully defends her dissertation.
May 2012	Stow turns 1.
August 2012	Ren has his second spine surgery (a laminectomy) in the lumbar spine; Stow is diagnosed with C-diff and a MRSA infection.
March 2013	Moe accepts a tenure-track position.
April 2013	Stow has an endoscopy, colonoscopy, and cystoscopy to determine cause of multiple infections and repeated “failure to thrive.”
May 2013	Stow turns 2.
July 2013	Family moves from one small midwestern town to a another small midwestern town.
August 2013	Moe starts new job.
November 2013	Ren has first his lumbar fusion surgery.
Winter 2013/2014	Polar vortex—Ren doesn’t leave the house from November until April. Moe shovels a LOT of snow.
March 2014	Ren and Moe go to Mayo Clinic to see if anything can be done for the spine. They are told (paraphrasing), "The spine is bad. It won't get better. Learn to live with pain."
May 2014	Stow turns 3.
September 2014	Ren has a 2-level fusion in his cervical spine.
May 2015	Stow turns 4.
September 2015	Ren diagnosed with severe depression.
November 2015	Spine surgeon discovers spinal cord is at risk of being permanently damaged due to stenosis.
December 2015	Ren has a second lumbar fusion and doesn’t leave the house from December to April.
February 2016	Stow is preliminarily diagnosed with autism.
May 2016	Stow turns 5.
December 2016	Family completes first year since 2010 that no one is hospitalized.
March 2017	Stow is formally diagnosed with autism after extensive testing.
May 2017	Ren’s kyphosis is so bad, they (Ren, Moe, and the specialists) determine it needs to be fixed so Ren can have a chance at a better quality of life. Stow turns 6.
July 2017	Ren has a spinal fusion from T2-S1 that requires 140 staples. He doesn't leave the house for anything except doctor's appointments until October.
August 2017	Ren hospitalized for heart attack symptoms.
September 2017	Ren hospitalized with double pulmonary emboli.
December 2017	Lung cancer scare for Ren.
January 2018	Doctor suspects bone bruise in femur and tells Ren he has to limit walking for six weeks.
May 2018	Stow turns 7.
December 2018	Moe gets tenure. Ren cleared by spine surgeon’s office after x-rays and exam show fusion looking good, completing only the second year since 2010 that no one was hospitalized.
January 2019	Polar vortex. Ren starts feeling new pain and hearing new noises coming from his lower back.
April 2019	After months of phone consultations, Ren finally agrees to be seen at spine center again.
May 2019	Spine doctor discovers broken rods. Stow turns 8.

When I am looking on the bright side, I remind myself that these circumstances would test the strongest of families, and I tell myself we should be proud of how we've pulled through and found humor and joy even in the hardest times. But, when I can't find the bright side, I wonder why the hits just keep coming and doubt that I have it in me to keep fighting.

I've promised myself and my readers that this blog will always be "real," and sometimes real means that I don't know what comes next or whether we have the grit and strength necessary to face it.  I don't know how we go on from here, but I do know that we have a spine consult scheduled for this week and that Ren and I will do what we can to keep moving forward until we just can't do it anymore.