ANSWERS TO ALL OF YOUR PRESSING QUESTIONS ABOUT REN

Some of you have asked how Ren is doing, which made me realize it’s been awhile since I’ve written a proper update. So, now I present to you, ANSWERS TO ALL OF YOUR PRESSING QUESTIONS ABOUT REN: 

Answer #1: First, and most importantly, vacuuming is still Ren’s life source. Or should I say life force?! I guess it’s probably both. The kids know if dad is vacuuming, all is well with the world, and if he’s not, well, something’s off. Some of you may call that an obsession. I call it the world’s easiest way to know if your spouse is feeling ok physically and mentally. And, I can tell you, Ren is feeling fine!

I’m not sure how SHIRO feels about Ren’s vacuuming habit, but I’ve got to admit, I’m a huge fan of the reduction in dog hair around the house. Given the fact that she dutifully comes and lies down next to him when he grabs the vacuum and the bag of dog treats, I’ve got to believe she doesn’t mind it too much!

Have I ever told you how good Ren is at getting animals to do what he wants them to do? Are we the only family with a cat that knows how to beg for food?

Answer #2: The spine is still in one piece. Well, actually, it’s in a lot of pieces, including a not insignificant quantity of extra titanium pieces! But, for now, the pieces are all where they belong. In fact, they’ve been in the right place for TWO WHOLE YEARS, which, trust me, in the world of spine surgeries feels like a blessed eternity. 

X-ray from Ren’s 2-year follow up appointment

We know that one day it is likely that what remains un-fused may go south like the rest of the spine did, but that day is not today. And, Ren is tremendously adept at making things work with the spine he has. The man has more overall flexibility than I do (darn him!), and aside from a few notable (and entertaining) exceptions (like swimming and being able to get himself out of a deep chair…and, oh yeah, the alpine slide), you would never know he’s had seven spine surgeries!

Answer #3: Ren’s playbook of luuuuv, a lifelong go-to source. How do I know he loves me? He makes my tea and picks up the dog poop. When it comes to words, though, his skills are less developed. I’ve been working on a translation guide:

Standard Japanese  /  Ren’s Japanese

 

Hello? (On the phone) / uhn

Welcome home (when I get home from work) / uhn

How was your day? / (silence)

Yes. (In response to a question, even if it’s not a yes-no question) / uhn

I read somewhere that the average number of words exchanged between a married Japanese couple in a day is well below 100 words. I don’t know if that’s true, and I can’t remember the exact number. I just remember thinking it was shockingly low. But then I started noticing how many words Ren actually says in a day. Many people say that a healthy relationship in Japan is one that requires few words. Lucky for us, then!!

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Right Ball

On the evening of the first day of e-learning for the kids, Stow spilled a huge cup of Sprite on Sky's computer and notebooks. Sky had accidentally left his computer in our gaming space when he collapsed on the nearby sofa, worn and full of anguish from an anxious day of doing school online. Unexpected changes and lack of certainty are hard for all kids, but they can be crippling for a kid on the spectrum, and Sky was spent. The next morning, when we discovered that the computer was fried, I knew there was no way we were getting through the pandemic and e-learning if Sky didn't have a working computer, so I got him in the car, we drove to Costco and we bought another one. Sometimes, even when money is tight, it makes more sense to take the hit.

Since then, we've had four school Chromebooks (for the younger two kids) crash and my work computer go kaput. We've also had a PS4, an iPad, and a kindle stop working. Pink has started referring to our house as a tech black hole. The only way I finally managed to get the internet to work fast enough for me to teach online was by using an ethernet cable (thanks, IT!!) long enough to snake through the living room, through my study (which had been taken over by the kids), and down the steps to my temporary office in the basement. Even then, when conditions weren't right--and almost ALWAYS related to Zoom--the internet for the whole house would go down. The weirdest day was when my Zoom meeting worked, but no other internet in the house worked.

My ethernet cable making its way in the world.

That's kind of how our pandemic has been going. Today marks the beginning of our twelfth week of social distancing. The kids left school for the weekend on March 13th and never went back. My classes let out for spring break the week before that, and by the end of my spring break, I knew I'd be teaching remotely for the foreseeable future. Like so many families, we experienced lots of heartbreak. Sky missed his first high school tennis season. Pink missed her first flute concert. We had finally gotten Stow set up with a one-on-one aide and were looking forward to see how that change helped him. We haven't been able to see my elderly parents for months and don't know when we will again. We've missed birthdays and other special occasions.....*

It has been HARD. Change of routine and loss of support structures has led to daily meltdowns, some quite traumatic. We've seen regression and loss of skills that make us nervous going forward. The challenges of parenting kids whose inflexibility, anxiety, and inability to really grasp why this is all happening can make a day seem eternal  Not being able to go out for a walk or a drink with a friend to vent has been exhausting. To be honest, the combination of increased stress and uncertainty and decreased in-person support has challenged me and Ren to dig deep into our resource reservoir. And what we've discovered is that we don't have enough to manage this on our own. But, we also have figured out different ways to take turns burning out.

The days are long!

Then, somewhere around week six, it struck me that we were somehow uniquely ready to deal with this situation in a way that many other families might not be. I realized that although this was all Very Hard, we were doing ok--the kids were getting along, Ren calm and relatively pain free, and I wasn't completely paralyzed by stress. That's when it occurred to me that much of what we've experienced up to now had prepared us for this. Thanks to Ren's seven spine surgeries and thanks to special needs parenting, we've had our lives stop in their tracks, and we've had to learn how to adjust when something that was working stops working.

Talk about pandemic readiness skills! Every time Ren has a spine surgery, we go from doing tons of activities to doing nothing. The world around us keeps going, but we freeze in place. Depending on the surgery, this can last anywhere from a couple of weeks to several months. If you've read my posts from those times, you know that there is always a moment where I worry that things will never be ok again. I worry that the surgery and all of the trauma surrounding it have taken us so far out of our "normal" lives that we might never find our way back. But, every single time we have come out the other side wiser--and a little more weathered--but ok. The waiting is the hardest part, but I am learning to lean into it and to believe that everything is going to be ok. It's going to look different. It may not be easy. Some of us will lose more than others along the way, but somehow it will be ok.

I'm also trying to laugh. A lot. This (see pic below) made me laugh yesterday. I don't know why I didn't see it before. I'm sure it has been in the garage FOREVER. Maybe I just didn't pay attention. In Japanese, it says denkyuu, or light bulbs. And, to be fair, the word for baseball is yaKYUU using the same kanji character, but I haven't laughed this hard in a long time.

Right ball

Make sure you're paying attention! Laugh together. Cry together. Keep making your way together. It will be okay, somehow. Even if it doesn't feel like it, it really will!

Right ball, you guys. Right ball.

*These are just examples, of course, and I also know we have been lucky to not have lost as much as so many other people have lost.

** Also, this post is completely insignificant in light of what is happening to black people all across our country right now. Please, listen to black voices, support them and don't ask them to tell you how to help. Stand with them, listen to them, and let them tell you their experiences without being questioned. Also, here are some places you can help.

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.

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.

Broken

There are some days in your life that start off one way and end entirely differently. Somewhere in the course of the day, something happens, and you know things will never be the same. I've had a few days like that.  I suspect everyone has.

Yesterday was one of those days for us. The weird thing is, I should have seen it coming. Something I haven't talked about much on this blog is Ren's severe depression. I don't talk about it because it really isn't my story to tell. What I can say, though, is that every time I notice his depression getting worse, it turns out there is something seriously wrong with the spine. It makes sense, right? The spine goes south, the pain increases, and he gets depressed. Only because he always experiences pain and because sometimes the pain ebbs and flows based on things like the weather or whether he did something more taxing than usual, it's not always clear when there is something new wrong with the back.

Before my own depression re-emerged after years of being under control, it was a lot easier to deal with things like the obsessions and meltdowns that come with autism and with the bad moods that come with spine pain. When my depression came back two years ago, the biggest concern I had was how I would continue to manage the intense stress that comes with our particular combination of autism, spine issues, and depression. Despite the fact that all signs pointed to the depression being back, I refused to believe it for months (do not recommend, btw).

The last few months have been hard. It can be hard to figure out how to keep myself in an ok place when everyone else is struggling. Depression and autism probably go together much more than people discuss, and it's a combo I wouldn't wish on anyone. I tried cajoling Ren out of his funk. I made threats. I asked him to leave for awhile to figure out how to be happier (he refused). I'm not sure I'd recommend any of these approaches, either.

Ren didn't know what was wrong, but he knew he couldn't leave and he knew he had to figure out how to turn things around despite the fact he was feeling pretty poor physically and mentally. He agreed to see the doctor to talk about medication and agreed, finally, to go back to the spine practice just to see if they could help. His refusal to go to the spine doctor makes sense to me because the pattern of how things go is the same--they try to figure out ways to manage the pain and only if and when that doesn't work, they decide to do an MRI or a CT. Every time we start the process of trying to figure out what's wrong, we learn something is really, really wrong. This has been our experience in three different practices in three different states. Surgical intervention with the spine is always the last resort, and it is always preferable to focus on least invasive procedures. This also makes sense to me.

Yesterday, we had our appointment with the non-surgical doctor at the spine center. We told her that we were pretty sure something what up in the lower back. We agreed that it didn't make much sense that he would be having the severe, pre-surgery-level pain given the fact there should be no movement there. And yet, and yet, we both suspected something was very, very wrong. At first, she tried to tell us the pain must be muscular, working on the assumption that the least likely scenario, a broken screw or rod, was, indeed, unlikely. She talked about restarting physical therapy or doing a pressure point injection. I told Ren he needed to tell her if he thought she was missing the point. So, he did.

"My leg goes numb when I lie down," he said.

"He says the pain feels like nerve pain and is as bad as it has ever been," I follow up.

"You know what?" she said. "Let's just take an X-ray to be sure."

Fifteen minutes later, she walked back in, ashen-faced.

"Well, I'm glad we took an X-ray," she started hesitantly, like doctors do when they have really bad news. "The rods are broken."

OMG

Do you ever get ringing in your ears? Do you ever feel like you can't think straight? Do you sometimes find it hard not to burst into tears on the spot? It took a lot of effort not to lose it completely, and I only vaguely heard her as she told us we'd need to get a CT scan and that the surgeon was already working through various repair strategies. "I'm so sorry this is happening to you guys," she said as we walked out. Small consolation.

When we got to the elevator, I wept while Ren patted me awkwardly on the back.  By the time the elevator got to the first floor, I pulled it together. In the car, I asked Ren how he was doing. "At least I know I'm not crazy," he said. "If I can live without fixing it, that's what I want to do."

We don't know what will happen next, but I suspect this is something that can't go unfixed. The uncanny timing of this, mapping almost perfectly on what happened two years ago, scares me. I saw a meme on FB the other day. "I can do this, I thought. And, even if I can't, I have to." That's where I am with all of this right now. Here's to learning the depths of our strength even though we don't want to.

One Year Later...

On this day a year ago, our lives ended, and then they began again. Because a year ago today, Ren had his most major spine surgery. This whole week, FB memories have been reminding me of how raw I felt heading into what I knew was going to be a huge ordeal. I had dreams of a miraculous recovery while also harboring anxieties and anger about how bad I imagined things might go. I wrote FB and blog posts as a way of coping all the while knowing that nothing I could do would prepare me for what was to come.

He walked into the hospital (with a cane) and left in an ambulance.

Going into the surgery, it turns out we really had no idea how bad it would be--and that's saying a lot since it was Ren's sixth spine surgery. Despite all we knew about how spinal fusions could go, we were missing some pretty basic information. For example, no one told us they would remove the old hardware in order to replace it with a single rod. Looking back, this seems obvious, but at the time, neither of us realized he would be cut open from the base of his neck to his tail bone.  Later we learned that the fusion itself took about four hours, but that it took the surgeon another almost 2 hours just to close the incision. When one of the nurses finally got around to counting them, we discovered that he had 140 staples in all. One hundred and forty--like a tweet, only not.

What they removed from his spine.

Ren went into pre-op before 6 am and didn't get to his hospital room until after 7:30 that night. In the meantime, his surgery went an hour longer than the longest prediction and he spent nearly 5 hours in the recovery room as they struggled to get his heart and BP under control. Even though he was one of the first cases of the day, he was also the very last case. Around 6 pm, after I'd been waiting for 12 hours, they asked me to go into the recovery room with him because they were having such a hard time communicating with him.

And, then there was one--Pre-op at 5:48 am. Surgery finished at 2:42 pm. Still waiting at 5:22 pm.

Ren had 9 (!!!!!) surgeries before this one, but nothing had prepared me for how bad he looked in the recovery room that night. So many friends got me through that day--texting, FB messaging, bringing games and food, sitting with me. One happened to check in just as I was walking into the recovery room to discover Ren in such a terrible state. That friend surely kept me from being swallowed up by my fear and panic as I felt the floor give way beneath my feet.

The neck wasn't suppose to be an issue.

With past surgeries, the long wait on the day of surgery is normally the worst part. This time, though, July 24, 2017 was just the beginning of what I came to see as the eternal post-op of my soul. Even though we THOUGHT we'd seen everything over the course of the first five spine surgeries, surgery number six seemed to bring a perfect storm of all the things that could go wrong. Ren had major issues with chest pain and blood pressure management (like what happened with surgeries #1 and #4). One of the kids turned up with MRSA, even though no one had been near the hospital or near anyone who'd been near the hospital (like what happened with surgery #2). We ended up back in the ER, twice (which is one more time than after surgeries #3 or #5). All of those things were at least on our radar as possible outcomes, but what we didn't expect was for Ren to almost immediately lose the use of his right arm, eliciting concerns that the neck had suffered catastrophic damage in the process of repairing the rest of the spine.

Transport from hospital to rehab facility.

Since he couldn't feed himself or use his arms to help himself walk with a walker, Ren was sent to a rehab facility. The facility provided such shoddy care and messed up his pain and heart medications so bad that he ended up in the ER and then in the hospital for four more days. We left that stay with a new aortic aneurism diagnosis and a strong conviction to never use a rehab facility again.

Back to the ER.

When I finally managed to get Ren home after nearly three weeks in the hospital and at the rehab center, he was less able to care for himself than he had ever been. He didn't go outside again until a month post-op. And, then, a couple of weeks after that, he ended up back in the ER, this time for pulmonary emboli in both lungs.

Ren's first time outside, one month after surgery.

All this time, I was juggling Ren's care, the kids's needs, everything associated with their schooling, preparation for my classes, and anything else that needed to get done on any given day. Not surprisingly, it didn't take long for me to realize that I couldn't possibly do it all. Less surprising, of course, is that all of the people around me had figured that out way before I did. Even before I knew to ask, they had started to gather around and provide a network of support. They brought food. They encouraged me to let others step in for me at work. They watched my kids. They helped me figure out all of Ren's new medications. They ran errands. They came over after the kids were in bed to have a drink.

Bionic man: an x-ray of what Ren's spine looks like now.

Looking back over the hellish year that started with a 12-hour day of waiting but that also included the death of Ren's mom (at a time when he couldn't travel to be with his family) and a formal and heartbreakingly detailed autism diagnosis for Stow, I'm pretty sure I wouldn't want to do it again. But, I am also pretty sure that I learned very important lessons (ones I needed to learn) about finding my tribe and trusting (and allowing) people to step up and help. It stinks that it took 6 spine surgeries and a whole lot of pain and suffering for me to figure this stuff out, but, you know, better late than never.

About this time last year, I adopted a new motto: "I'm growing as a person, dammit." If I've learned anything through these surgeries and the kids' various struggles, it's that I am not done figuring things out, yet. I suppose that's an important lesson to learn, too.

The Strangest Anniversary Post You'll Ever Read (Actually, I Have No Way of Proving That)

Eighteen years ago on this day, when Ren and I married in a small country church in rural Indiana, I am not sure we could have imagined the path we've taken to now. I mean, sure, he had to leave the hospital for the wedding, and our first stop once he and his entourage arrived from Japan was at the orthopedic shoulder surgeon, but I honestly just thought our marriage was being front loaded with challenges. Our tax day wedding anniversary serves as an ongoing reminder that I may have miscalculated.

The original "plan" was to get married in March on a Saturday closest to the date of our first date back in 1997. But, then Ren had a motorcycle accident on his way to work and pulverized the humeral head (the ball part of the ball and socket joint) of his right shoulder. He spent from late November until our new wedding date in mid-April undergoing and recovering from shoulder surgeries. The shoulder specialist we saw in Indiana days before our wedding confirmed that Ren would need a third surgery after our honeymoon. So, we got married, we went to Hawaii for a couple of weeks, and then returned to Japan, where I immediately found myself parenting a surly teenager who was no happier about the situation than I was.

The surgery happened in a hospital two hours from home. To get there, I had to drive my newly acquired tin can (kei car) along unfamiliar highways and through windy back roads. Once there, I navigated the unfamiliar hospital's system of surgery and recovery. Much like I have done for surgeries since, I did this all alone. Looking back on it, I'm amazed by my 28 year-old self's sheer determination.

If you've been reading this blog, you know that this was far from the last of our challenges (as I'd so naively assumed in the early days of our marriage). An international move with a teenager in year two would've stretched most marriages. But, it turns out that was nothing. Because, then we had emergency c-section baby #1 followed 10 months later by Ren's retinal detachment and surgery. And, as we were trying to figure out how to parent a very non-compliant baby turned toddler, we found ourselves pregnant with baby #2, another c-section that arrived just 2 weeks before we sold our house and 6 weeks before we packed up our bags and moved to Tokyo. Moving back and forth to Japan with two small children is hard. Doing it as a poor graduate student who is trying to write a dissertation while also figuring out how to feed the family is even harder. Add to that a baby with allergies and an undiagnosed 3 year-old, and I start to run out of words to describe it.

We moved back to the states in mid-2009 and Sky was diagnosed in late 2010. Five months later, Stow was born. Fives days after that Pink was hospitalized for asthma for the first time, and a few days later, me for a bad gall bladder. For the first two years of his life--during the same period that Ren was starting to require spine surgeries--Stow went from 90th percentile to failure-to-thrive twice. He got MRSA and C-diff and was in and out of doctors' offices pretty much non-stop. For our anniversary in 2013, Stow had a colonoscopy, cystoscopy, and endoscopy. He was 22 months old. He didn't roll over until 11 1/2 months. He didn't crawl until after he was 1. Meaningful speech didn't start until well into his third year. By then, he was on his way to an autism diagnosis (and Ren had already had three spine surgeries and would go on to have three more surgeries and some other stuff).

It's weird to spend an anniversary post talking about all the things that have gone wrong. When I spell it out this way, it can start to seem a bit like we're cursed. So, when I tell the story (if I tell it), I try to focus on our resilience, on the ways in which we have maintained our senses of humor, the way we have stayed together through it all. All of these things are true, but, this anniversary, 18 years after the first scary surgery and 9 months after the last one, I no longer imagine, like I did back in 2000, that somehow we are just going through a rough patch and that soon everything will be fine. We will most likely never be the kind of fine I expected when we got married.

But, I've learned a lot as a result. I've learned how strong we are. I've learned how weak we are. I've learned that sometimes you have to fight to stay together even when you don't want to anymore. Most of all, though, I've learned how important it is to not go through all of this alone. So, thank you to those of you who have supported us virtually through this blog and to those of you who have supported us in our real life. Here's to another 18 years!

What Do You Do with So Much Awesome?

Recently, I've started to suspect that I am losing my mind. And, if not, that I have less patience than I should. At a certain point each evening (usually about 3 hours after I've gotten home from a long, busy day at work), I find myself yelling at someone or the other. And, I can't figure out if I am just tired and grumpy, or if something has driven me to it. So, yesterday, I decided to keep an informal and completely unscientific list of the conversations I was engaged in between the hours of 6 and 9 p.m. Note: this list is not comprehensive but it IS true (in that these conversations ALL happened). Looking at it, I've decided that maybe there is just a little too much awesome happening at my house, and I clearly don't have what it takes to keep up with all of these conversations.

(Just for fun, see if you can guess who said what.)

1. "Mom, look at this book I got from the library. (Holds up The Essential Research: A Complete. Up-to-Date, One-Volume Sourcebook for Journalists, Writers, Students and Everyone Who Needs Facts Fast).  Do you want to know how many people died in traffic accidents in 1990 in Vermont? It's a surprisingly low number. Can you believe I am the first person to ever check this book out of the school library?"

2. "Oh, yeah. I forgot to tell you that my left leg went numb this afternoon, and I couldn't walk. It's a like a tingling shock, but it's so strong and unexpected that I can't move my leg." 

3. "Mom, look. When I shriek loud enough, the Anpanman Christmas toy turns on all by itself." (Shriek followed by Anpanman rocking and playing Jingle Bells in a slightly flat electronic frenzy. Followed by another kid testing his shriek to see if it has the same effect. It does)."

4. "I'm going to shake this tree hard enough that all of the ornaments fall off." 

5. "Tomorrow I am going to try to hook up the DJGKESM. If it doesn't work, you need to call and tell them SKEWMG AKTJES and KGWJETASDGO. Ok? Are you listening?" 

6. "Brennan sits at the allergy table everyday because he likes Annabelle. He likes girls who are smart and pretty because he wants them to do his homework for him. I think he's stupid and should leave us alone. I like playing with Annabelle because she is nice and smart and doesn't care how she looks just like me." 

7. "I think there is something wrong with the nerve here (points vaguely to lower back). It feels really funny. (Me: Shoudn't I call the doctor?) Not, yet. Maybe it will get better besides they can't do anything about it." 

8.  "I think Momo really likes it when I _____________ (insert ridiculously cat-unfriendly behavior here). All of my friends think I am saying Mom when I say Momo, but I don't think Momo and Mama sound alike at all. Isn't that weird?" 

9. "Why don't you make the kind of gratin that Big Sissy makes with the macaroni in it? I don't like this rice one. I think you put in too much rice." 

10. "How come you never watch ______________ (insert TV program title) anymore?" 

11. "Oops. I forgot to put on underwear again." 

12. "I think the surgery failed. That's the only explanation for _____________ (insert pain description)."

13. "I'm going back upstairs. It's too loud down here. I can't eat when it's this loud and you told me to not to yell at everyone." 

14. "Can I turn on the outside lights and ride my bike in the dark?"

15. "Are you sure you love me?" 

16. "Can I use your computer to look up KGMTKSEMKG?" 

17. "Mom, why don't you exercise like Jimmy's mom. She exercises all the time." (Me: Because I use up all my free time asking you guys to do the same thing over and over again.) "That's probably better, anyway. If you had time to exercise, you'd probably start drinking Diet Coke again and watch too much TV." 

18. "Do you want to smell my bottom?" 

19. "Mom, the dinosaur's head fell off again."

20. "Why does he have more ornaments than me?" (Me: Because he's older than you). "I knew it. You don't love me. You wish I was never born."

21. "Can I use your computer to look up FLEKWGSJP?" 

22.  "It's not true that 9 year-olds are supposed to go to bed by 8:30. You're just using that stupid chart to prove that you're right."  

23. "I think I have figured out why that video game is so expensive. It's new and it's popular so lots of people want to buy it, so that's why it's expensive. That or maybe the graphics are some kind of special new technology."

24. "Can I use your computer to check my homework?"

25. "Can I play Wii?" (Me: No. It's a school night.)

26. (20 minutes later) "Why can't I play Wii?"  

ANSWER KEY:

1. Pink
2. Ren
3. Sky (and then Stow)
4. Stow
5. Ren
6. Pink
7. Ren
8. Pink
9. Sky
10. Sky
11. Stow
12. Ren
13. Sky
14. Stow
15. Pink
16. Sky
17. Pink
18. Stow
19. All three.
10. Stow
21. Sky
22. Pink
23. Sky
24. Sky
25. Sky
26. Sky

The Eternal Post-op of My Soul

Six weeks ago, Ren came home from the hospital and reclaimed his wedding band, so technically, I don't need to be wearing this bracelet anymore. I can't tell you why, exactly, but this surgery felt different than the rest. And, so I decided to keep wearing it to remind me to stay all in with Ren as he gets through this and to remind me to take heart in the fact that we continue to survive against some pretty challenging odds.

This is spine surgery number six, and since each previous surgery has showed us the various permutations possible during hospitalization, post-op, and recovery, we thought we knew what to expect with this one. We have come to understand the many ways a body can rebel--a blistering allergic reaction to steri-strips; life-threatening blood pressure drops; confusion, hallucination, belligerence, or extreme grogginess caused by the slightest failure to get the meds right; worrisome weight loss. We've also seen surgery recovery be short-circuited by something else going wrong with the spine before even making it through the post-op period. This surgery threw us a few curve balls though. Two weeks ago, Ren went back into the hospital for double pulmonary embolisms. Four weeks before that, he was hospitalized for heart issues. At the end of week 8, we find ourselves where we might normally be at the end of week 3. This has become the eternal post-op of my soul.

Ren has four weeks to go until he is free from his post-op restrictions. He still cannot bend, twist, or lift, and whenever he is out of bed he has to wear a full torso turtle shell brace. For eight weeks, I have been mom, dad, cleaning lady, laundry person, taxi driver, personal shopper, cook, referee. And, I will continue to do all of these things for at least four more weeks. What makes it hardest, though, is that Ren wants to be doing these things, and once he feels well enough, he has to be constantly reminded not to do them. We fight about it. It's exhausting for me. It's frustrating for him.

In sickness and in health....

As we enter our seventh year of severe spine issues, I have an entirely new understanding of this promise so many of us make on our wedding day (though actually, Ren and I didn't say these words). Here's what I have learned. In sickness means being able and willing to advocate for your loved one even when you are totally exhausted and have no idea what's going on. In sickness means filling prescriptions, divvying out pills, and constantly watching for signs of side effects. In sickness means keeping your patience when the "patient" is being a complete asshole. In sickness is dealing with incisions, wiping bottoms, and washing hard to reach places for weeks or even months. In sickness means feeling isolated and alone when everyone else goes about their business but you are still stuck in limbo, caring for someone who isn't quite able to care for himself and wondering if or when he will be "back to normal." In sickness means being ever vigilant about the restrictions your loved one is under even when he doesn't want to abide by them anymore. In sickness is trying to help the kids keep it together in week one and week three and week eight knowing that all of the changes and the feelings of loss they are experiencing make it almost impossible for them to behave well. In sickness is wondering whether you can keep doing this but knowing that you have to. In sickness means knowing that your life is changing in ways you don't want it to and knowing there's nothing you can do to stop it.

A few months ago, I added this tiger eye bracelet to my collection.

The one on the bottom is the bracelet I wear in memory of Ren's brother; I had bought it on the day he was killed by a distracted driver (on his birthday in 2014). It reminds me to live in the moment, and more importantly, never to drive distracted. The new one, though, I picked up in Japan a month or so before this last surgery. For reasons I can't explain, I knew that this summer would be life-changing, but that I needed a reminder to be present and engaged in whatever changes were coming. I am only just beginning to understand what this means, but the bracelet prompts me to keep trying to figure it out. I know the bracelets are hokey, but with special needs kids, a job, and spine surgeries, I need something to help keep me grounded!

Not long ago, my brother was staring down a category 5 hurricane when Irma shifted directions and took aim at the southwest Florida coast. By the time they realized the hurricane was  coming at them, they had nowhere to go. Talking with him about what he faced made me think about the post I wrote here a few months ago. Sometimes in life, you find yourself staring down the worst possible scenario. You can rack your brain for alternatives, but sooner or later, you have to accept that there is no way around the storm in front of you. You don't know if you have it in you to get through it, but you have no choice but to try. The storm will destroy some things. Things that were important to you will not survive. You won't be the same when you come out the other side. But, you will come out the other side. And, when you do, you will know that you are stronger than you realized, and you will find the strength and resilience to rebuild, creating something new and different and probably totally unexpected from the pieces of your old life that remain. Ren, the kids, and I will rebuild. We always do.

The Days Before Surgery

In the days before a major surgery, we fall into an uneasy rhythm. Neither of us really sleeps well. One of us is worried about the waiting and then the caregiving and then the weeks and weeks of single parenting. The other of us tries to alleviate his fears about all that could go wrong by working overtime in futile attempts to do all the things that need to be done while also nursing an increasingly uncooperative back. Pain and guilt and disappointment are not insignificant factors in the calculus of our arguments in this week before surgery.

I'd be lying if I said that the dominant emotion I feel leading up to surgery isn't anger. There's an anger bordering on rage that percolates in the back of my mind and settles into my stomach in ways I never fully anticipate, and I fail to suppress it completely. At unexpected moments, it spills out onto Ren and the kids, paving the way for guilt and fear to coat the nooks and crannies of my consciousness.

The thing no one tells you about being a caregiver is that it will make you mad, and it's an anger that has no place to go. I want to be mad at Ren for having such a shitty spine and for convincing me that he would always be the healthy part of our "in sickness and in health." I want to be mad at the kids for not rising to the impossibly high levels of cooperation and performance that times like this require. I want to be mad at friends and family who don't reach out or offer to help. I want to be mad at all of you whose lives aren't completely upended every 6 to 18 months and who can imagine what the future will look like well enough to plan for it. But, I know this anger is inappropriate, so I try to distract myself with mindless activities. I spend too much time on Facebook and look for reasons to run useless errands. I obsess about stupid stuff. I pick fights with Ren.

Do you know how to remove a blood drain? Can you tell the difference between a skin irritation caused by adhesive and the beginnings of a wound infection? When is lethargy the sign someone is exhausted from major surgery and its recovery and when is it a sign of something more serious? Does unexplained pain merit a trip to convenient care, or does it mean you should go straight to the ER? What about a cough? Is it allergies? A cold? Or the beginning of so-call hospital induced pneumonia? These and many more are the kinds of questions I am expected to be able to answer when I am put in charge of the care of a person who's just had another major surgery, and, while the surgeon, your primary doctor, and the hospital are great at making sure you're well enough not to die on the operating table, they become surprisingly hands off once you're sent home. I suspect that maybe what I am angriest at is a healthcare system that sends people home after major surgeries--which are benignly referred to as "procedures"--while trying to convince them that they'd be "more comfortable" at home or that short hospital stays are "safer," a healthcare system, coincidentally, that also provides so little support for families of kids with special needs that a major health crisis like this makes it nearly impossible to move forward. But, I'm not supposed to be political. This is a humor blog after all, so forget I mentioned it.

By the day of surgery, I will reign in all of these frustrations and fears, and I will sit with Ren for hours as they shave and prick and pull and ask dozens of the same questions. Then, I will watch as they use a marker to map their plan on his back like a football coach diagramming plays. When they wheel him away already hooked to an IV with his head in a surgical hat, I will walk to the waiting room and wait. As the hours pass, I will struggle but ultimately fail to suppress my anxieties. During the impossibly short few days he stays in the hospital, I will keep him company and advocate fiercely for him. On day four (!!), he will be pushed out in a wheelchair, helped into the car, and propped on pillows, and I will drive him home, slowly, avoiding bumps and taking the turns along the way carefully, hesitantly. Once we're home, I will support his full weight as he gingerly makes the seemingly epic journey from the garage to the bedroom where I will help him get comfortable in bed and where he will essentially stay for months until he is ready and able to rejoin the world of the living.

In the meantime, life will go on. The kids and I will figure out how to find joy and have fun and include Ren where we can. I will remember what it's like not to feel so raw and vulnerable. And,(hopefully, most likely, assuredly) I will find my sense of humor again.

The Great Flood of 2017

I take a quick shower. Start to finish, 7 minutes tops. Still, you'd be amazed by how much can go wrong during that short amount of time. In fact, I am pretty sure that each time I cross the threshold into the bathroom, I trip some sort of wire in the time-space continuum. It is as if time stops and then stretches so that each minute lasts just short of eternity. Multiple epic sagas occur during the brief time I am occupied with my personal hygiene and self care.

Since practically every shower I've taken since 2004 has been interrupted by someone or something, I have gotten pretty adept at tuning out the mayhem that invariably occurs. This is why it seemed so strange to hear ear-rending screams the other day as I climbed out of the shower. Stranger, the screams were coming from Ren. Ren is the kind of guy who encounters a snake in the basement and decides the best course of action is to catch it with chopsticks and keep it as a family pet, so when I heard him screaming I knew it couldn't be good.

Grabbing a towel, I rushed out of the bathroom without even drying myself. I found him furiously wiping the floor in the guest bathroom. Clearly, this was no simple potty accident. But, before I could comprehend what had happened, Ren shouted, "Stow flooded the bathroom. Check the basement!!!!"

I'd only been gone for 7 minutes. When I went to the shower, the kids were dressed, the bentos had been made, and everyone was calmly eating breakfast. Now there was utter chaos.

We had 15 minutes to bus time, so I barked directions to Sky and Pink as I threw on some clothes and ran down the steps. "Get your teeth brushed. Pack your backpacks. Keep Stow out of trouble." Normally instructions like these go entirely unheeded, but the kids were suddenly unnaturally compliant.

Downstairs, I hurried from room to room trying to locate where the tremendous amount of water (WHY is there SO MUCH WATER?!?!) was going. I started in the bathroom and made my way from room to room checking the most logical places for the water to drain. Regret about the decision to drywall the ceilings consumed me. I heard the water before I saw it. It sounded a little like someone was dumping buckets from the ceiling. In my head, I was finding it hard to calculate the cost of repair.

When I finally found the damage, I was amazed. I was amazed by colossal flood Stow had caused, but I was even more amazed by the fact that the massive amounts of water all poured down just inside the doorway to the unfinished storage room. I mean, an inch further to the west and the water would have pooled inside the drywall causing it to crumble down onto the new-ish carpet and furniture in the finished part of the basement. More surprising, even though the water was spraying everywhere, it sprayed in such a way that only unimportant and easily dried things got wet. Mere centimeters from a puddle on the table, for example, a pile of the kids' best artwork was completely dry. I got up on a chair and reached my hand over the top of the storage room door frame into the finished part of the ceiling; besides a small bit of wet insulation, it was completely dry. I ripped out the wet part and went in search of the wet vac.

In the end, the whole catastrophe lasted about 30 minutes. The kids got to the bus on time, and after drying up the bathroom cabinets and floor and relocating all the dehumidifiers and heaters in the house to the basement, I left Ren and Sky to finish vacuuming up the water in the storage room. As I drove to work, only minutes later than I might have been without the flood, I thought about how this great flood so quickly resolved was probably a perfect metaphor for something--though for what, I wasn't entirely sure.

See, the other piece of the story is this: things are falling apart again. Our literal flood symbolizes a figurative one that threatens to overwhelm us. The week that Stow flooded the bathroom, we started pretty intensive in-home therapy to try to get a better handle on the flare in behavioral challenges that feel pretty insurmountable right now. That week also Ren finally acknowledged that, yes, his back really, really hurts. I'd been suspecting this for awhile, but he wasn't ready to admit it until he could no longer stand the pain. The fact that Ren panicked so quickly and worked so slowly to stem Stow's flood was irrefutable proof to me that the back is probably past the point of no return.

So, yeah, one way to read Stow's bathroom flood is as a sign that we are incredibly luck and that everything will be okay. But, I imagine the more accurate reading of it is as a sign that the relative peace that came from 12 straight months of a cooperative spine has come to an end. We're about to hit some rough terrain again, and Stow's flood was just the beginning.

Stow's Epic Journey

It turns out that having two kids on the autism spectrum can make life pretty crazy at times. Among the interventions we've used on and off over the years is behavioral therapy. These days, we're fortunate to live near one of the best play therapy centers around, so both Stow and Sky work with therapists there. Because our particular combination of poor processing, anxiety, and sensory overload together with a considerable age and developmental gap between Sky and Stow can make for some challenging parenting, I often find myself texting the therapists between sessions.

One day a couple of weeks ago, I was engaged in a text exchange as I waited for Pink to finish checking out books at the local library. In it, I was describing to the therapist how life at our house is somewhere between "survival of the fittest" and Lord of the Flies. Just as I typed Lord of the Flies, though, I was interrupted by Pink.  She seemed upset.

"Stow's here!" she exclaimed.

Lord of the Flies...

You know how when you get news that makes no sense because it's so far out of context that you can't place it? Well, that's what this was like. Since I KNEW that Stow was at home doing his Superkids homework on the computer with Ren and Sky, I knew he couldn't ALSO be at the library. It was impossible--which clearly meant that Pink was lying, which really didn't make any sense. But, before I could figure why Pink would concoct such an outrageous story, Stow ran up to me and gave me a big bear hug.

I've never been more off put by a hug in my life. It's hard to describe the feeling one gets when one's 5 year-old appears in a place he's not supposed to be. I sought a rational explanation:

"Is Daddy in the car?" I asked.

"No."

"Then, how did you get here?" I followed up, not really wanting to hear the answer.

"I rode my bike!" he replied proudly.

Stow has only recently mastered the art of riding without training wheels. This day, this ride was probably only the fifth one he's ever taken without them. In order to get to the library, Stow would have had to leave the relative safety of our neighborhood and ride about 3/4 of a mile along a very busy road that has no sidewalk and minimal shoulder. Even Sky, who's 12 and who has been riding a bike for years now, is too nervous to ride his bike along that road. Though Stow was standing in front of me telling me he'd ridden his bike to the library, I found it hard to believe.

Struck with a sudden wave of nausea, I calmly stood up, took Stow by the hand, told Pink to meet us at the car, and left the library. Just outside the door, I found Stow's bike and helmet.

A little bike for such a big journey.

Still holding Stow's hand with my left hand, I picked the bike and helmet up with my right, and without a word, put them into the trunk of my car. Stow was simultaneously giddy with the adrenaline rush of his big adventure and puzzled by my response to him. He seemed to expect me to be happy to see him and maybe even proud that he'd gotten so good on his bike.

For a few moments, I couldn't figure out how to respond to this unexpected feat. But, once I regained my composure, I told Stow that I was very unhappy with his dangerous choice and that his bike would go into time out when we got home. He didn't seem to understand why I was reacting that way, so the conversation went like this:

"Stow, you can never, ever do that again. That was very dangerous!"

"It's okay. I am brave. I wasn't scared, even on the hard part. I just told myself, 'You can do it!'"

"But that's a busy street, and you are not very tall. What if someone didn't see you and hit you?"

"Don't worry, Mommy. The people were nice. They stopped for me."

Not surprisingly, this exchange didn't do much to calm my upset stomach or dissipate the growing sense of doom that crowded in around me. Stow had never just left the house before.  He'd never ridden his bike out of the driveway, much less out of the neighborhood. This act was so unprecedented, Ren and I struggled to get him to understand why he couldn't just leave like that.

At home, Ren and I explained that being brave and taking unnecessary risks were not the same thing. We talked about Spiderman and Power Rangers and all the good guys in Star Wars and every other superhero Stow loves, and using their examples, we explained how they were always only brave in order to help others. We told him that no superhero would do something dangerous unless he had no other choice. I'm not sure how much he understood, but I hope a least little.

In the end, we made him repeat the bike rules multiple times--

1) always wear a helmet
2) don't leave the driveway without permission
3) never ride in the middle of the road.

And, then we locked up his bike.

Grounded.

Ren and I have been co-parenting for the better part of 20 years. Stow is our fourth child. Before Stow, I think Ren and I had naively come to believe we knew what we were doing. Turns out maybe we don't.

The Problem with Inertia

A few days ago, I came home from work to find this on the kitchen counter.

In case it's not clear, that's a 14-inch snake coiled at the bottom of an empty pickle jar.

By the time I walked in, the snake had already been welcomed wholeheartedly into the family. The two younger kids tittered around the jar talking excitedly about what they'd feed it and what they'd name it while Sky searched studiously for information about our new pet on the internet.

Let's pretend you've been gone on a 10-day business trip to, say, Japan, where you were busy ten to twelve hours each day, fighting jet lag on the fumes of the caffeine you managed to get your hands on when it became clear you wouldn't sleep past 5 a.m. on any given morning. Then imagine you'd come back to a monstrously tall pile of midterm papers to grade and three children and a spouse with an infinitely deep mom-sized hole in their collective souls that could only be filled by you. Add to that a very full week of classes and meetings, and you have a pretty good idea of what state I was in when I met the snake.

Sometimes it can be really hard for me to keep it together. This was one of those times.

It took every ounce of my self control to keep a calm voice when I asked Ren, "Where'd we get the snake?"

His answer didn't do much to help my frayed, exhausted self.

"The basement," he said, simply. 

After a little more prodding, I learned that he'd found the snake at the bottom of the steps, and since it was in the kids' playroom, he assumed it was a toy. Until he kicked it. And it slithered away.

I don't know about you, but if I was home alone and found a snake at the bottom of the steps to the basement playroom (which is usually dark, by the way), and if I'd kicked that snake thinking it was a toy only to have it hiss away, I would have lost my sh*t. I'm not sure what form my screaming and fleeing would've taken, but I know that I'd probably never go into the basement ever again. Ever.

Ren is not me, though. Apparently, his first thought was to catch the snake, put it in a jar, and save it to show all of us when we got home. I wish I could've been there to see his actual reaction when he kicked a real snake with his bare foot. He tells me he did not scream and that he was not particularly surprised by it. Part of me finds that really hard to believe, but the other part of me knows just how unflappable Ren can be.

"What did you say when you saw it?" I asked hopefully, imagining that this might be the one time he expressed unfettered emotion.

"I said, 'Oh,'" he replied, "and then I caught it with some disposable chopsticks."

With chopsticks!!! Take that, Mr. Miyagi! I was too fascinated with the image of Ren plucking a snake off the floor with chopsticks to wonder whether he'd taken a jar with him or carried the darn thing up the steps while it squirmed disturbingly close to his hand. As I was thinking about this, I noticed that our usual drying pad was missing from the counter top. 

"It's in the wash," Ren said in response to my puzzled look. "The snake got away, so I had to wash it. That bugger is fast!"

Looking at the disinfectant wipes and everything that was pushed aside on the counter, images of Stow loosening the lid of the jar to get a better look flashed through my mind. 

"Don't you think the snake is pretty overwhelmed by us? Maybe we should put him some place quieter," I suggested, feigning concern about the snake in the hopes that Ren would agree to take the jar off the kitchen counter and put it into the garage. 

Mysteriously, the kids didn't seem to be the least bit fazed by this new addition to our family. (Then again, Ren is their father, so maybe this isn't such a mystery after all). By dinner time, Sky had determined that the snake was a venom-less, non-poisonous brown snake. I managed to get everyone through the dinner, homework, and baths without weighing in on possible names or giving ANY INDICATION WHATSOEVER that I would be willing to house a snake. Still, there seemed to be a general assumption that the snake was here to stay. 

When I left for work the next morning, I asked Ren to let the snake go before the kids got home.

"Okay," he responded distractedly. I couldn't tell whether he was not listening or whether maybe he thought a snake would make a nice pet, but I was pretty sure it'd still be here when I got home.

It was.

Ren was exhibiting an odd inertia about the whole thing, and I knew it was the kind of inertia that would lead us to becoming a two-pet family, so, before dinner on the second night, I took matters into my own hands and sent the kids out on a repatriation mission. They knew that the snake would die if we didn't either feed it or let it go, and they also knew--though I never said as much--that there was no WAY I was about to start feeding a snake. So, they traipsed out into the empty field behind our house and let not-so-little Snakey go.

I'm not sure what the moral of this story is, but I do know that I won't walk through the basement without turning the lights on ever again. And, I also know that a while pets can be a great addition to any family, it's okay to let the snake back out into the yard.

Deja vu

FB Memories has been messing we me again. Yesterday, the day after Ren's surgery, this memory popped up:

Sky's three wishes from fall 2014.

Apparently, a year ago, Sky was wishing his dad's spine would get better and that our overall stress level would decline (I wrote a post about this here). As I was wandering the halls of the hospital two days ago (a.k.a. a day before this FB memory appeared), waiting for Ren to get through surgery and thinking about just about everything under the sun, I came across a wall of artwork drawn by children from a local middle school. Their artwork, created to cheer up the poor souls in the hospital, made me think about our kids and about how they will never be able to think about a hospital without remembering the many surgeries Ren has had.

Looking at those pictures, I realized that most of the young artists had probably never had a family member in the hospital or never had to have their parents taken away from them for long periods of time due to injury, illness, or major surgery. They have probably never been told to cut it out because Daddy can't get out of bed today and Mommy can't handle everything unless they start pulling their own load. They probably haven't cried about the days of old when Daddy could carry them and let them ride on his back playing horsey.

Generally, I preach acceptance and joy to the kids. I tell them that we are lucky because we have each other and that we have hope because of our faith. I help them focus on the positive while acknowledging that some of this really stinks! But, when I looked at those works of art, it hit me that these spine surgeries and Ren's increasing lack of mobility will most likely be a defining, if not THE defining, event in their lives.

As parents, we all know that there are hurts from which we can't fully shield our kids. As a parent with a spouse experiencing significant health issues, I've learned that there is also no way to make life completely "normal" for our three young ones. Multiple times in the last four years, I've left them with sitters, friends, or relatives so that I can go keep vigil while their father has surgery. We've dragged them to appointments with a multitude of specialists as we try to get to the bottom of Ren's issues. We even left them with their grandparents for 10 days, so we could make the trek to Mayo Clinic. All of these times, we've tried to be upbeat and to keep their routines as routine as possible. But, they've had to learn some really hard lessons really young: Moms and dads aren't invincible. Sometimes it seems like God isn't hearing our prayers. Life isn't fair.

On Monday night, when I got home after 12 hours in the hospital with Ren, I found the kids asleep and this Pink P creation on my desk:

"Dear mom how is daddy?"

Pink worries about her dad. She wants to know he's okay. When he's gone, she mourns his absence, even when I explain it will be just for a few days. All of my kids feel the stress of these surgeries and the subsequent imperfect recoveries. And, despite their amazing resilience, I know they have all lost a little something along the way.

I've learned not to pray that my kids won't experience pain or hardship. Instead, I hope for them a life full of joy no matter what the situation. I hope for them people who love and accept them. I hope for them the words to express how they're feeling and a way through the hard times that perfectly suits each of them. And, I hope for them to discover new paths in their relationships with Ren, so that no matter what happens with the spine, these momentary sorrows will be overshadowed by so many more years of joy and happiness.