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 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 Great Easter Incident of 2016

Pink P tends to cry. A lot. She cries when she's sad. She cries when she's happy. She cries when she's mad. She cries if someone jumps out and scares her. She cries when her brothers hurt her, or even if she's only received the slightest of nudges. She cries about new food she doesn't like. She cries when I leave. She cries when I come back. She even cries in anticipation, upset about what might have happened even though it didn't.

Pink P's crying used to bug me, but I've come to understand that she cries because she's a deep feeler of feelings, and crying is her way of managing all those feels. The problem, though, is that when you have a kid who cries a lot, it can be difficult to ascertain whether or not something serious has happened. We've read the story about the boy who cried wolf to Pink more than once. And, we've gone to great lengths to explain the importance of not overreacting, but our recent eggplant-curry episode demonstrates how hard these lessons are for her to grasp (link).

That's what made the The Great Easter Incident of 2016 such a conundrum. I mean, I still don't quite understand what happened, and I've had a few days to think about it. The Great Easter Incident of 2016 was preceded by the Great Easter Basket Hunt of 2016 and the Great Dig Through Your Easter Loot Moment of 2016. A lot of planning and purchasing and hiding of eggs led up to that moment on Easter morning when the kids were quietly checking out their baskets, and I figured I'd earned a few minutes of down time.

The instant I sat down to drink my cup of tea, however, Pink gave an almost imperceptible grunt, stood up, and went into the bathroom. It happened so quickly and quietly, I probably wouldn't have even noticed if Stow hadn't announced that Pink had hurt herself.

Stow is prone to exaggeration and the occasional lie, though. He also tends to get his descriptors mixed up, so I wasn't convinced anything was wrong. After all, Pink wasn't crying, and she wasn't calling for my help. These are two things she does ALL. THE. TIME. so I figured she was fine.

 Still, just to be sure, I asked Sky to look in on her.

He peeked around the corner into the guest bathroom and said very matter of factly, "She's bleeding."

At this point, I figured something must be up, but I didn't think it was too serious (see the paragraph above about Pink's lack of tears and drama). I asked Ren to check on Pink anyway. Ren is EMT-trained and ALWAYS handles the kids' injuries better than I do. When someone is bleeding, Ren's your guy. Ninety-nine times out of a hundred, accidents or injuries are so minor that Ren determines they don't even merit the use of a band-aid. And, given that Pink wasn't crying or panicking, I figured the odds were even higher that whatever was going on with her probably wasn't serious.

But, then I heard Ren say, "Wow. You cut it really good!"

His Ren's voice had an odd combination of shock and admiration for how thoroughly Pink had managed to cut herself. Now I was paying attention.

"Do we need to go to the hospital?" I asked, trying hard to match the nonchalance of everyone else.

"Yes," came his reply. "This isn't going to stop bleeding."

Crap.

It was 7:10 on Easter morning. We were all in our pajamas. And, if I know anything at all about Ren, I know that he's right when he says a person needs to go to the hospital. So I got dressed and then helped Pink get dressed (since she was applying pressure to the cut on one hand with her other hand) and drove her to the ER (together with my mom who was visiting for the holiday).

Three stitches and a mini panic attack (mine) later, when we were back in the car and headed home, I asked Pink why she didn't cry when she cut her finger.

"I was trying to be brave," she said. Of course. The one time she should have cried, she didn't.

Thinking about it afterwards, I couldn't help but be amazed by just how calmly everyone handled The Great Easter Incident of 2016. In a house where eating a bowl of cereal elicits something akin to pandemonium, the fact that not one child batted an eyelash when Pink put a deep inch-long scissor cut into her finger reminds me that I can never EVER rest in the knowledge that I actually know anything about parenting these childrren.

Behold the Sacred Objects of Our Youth

On my way to bed tonight, I walked past this black bowl. Since it sits on the corner of our piano, walking past it is something I do approximately 40 times a day. Today, though, when I looked inside the bowl, I had the most unexpected flashback to the day 20 or so years ago, when a friend and I wended our way through the back alleys of  Bangkok in search of the "monk bowl" district.

Piano.

I don't know why we'd decided so resolutely that we needed to find the place where these alms bowls were being made or how we managed to purchase them without a phrase of passable Thai between us. I do remember that it wasn't easy to locate the street so far off the beaten path and that it took us hours of frustrated wandering to find what we were looking for. What sticks with me most, though, is the intricate hammering of the artisans, crouched over low tables in open-air store fronts, sealing the seams of the bowls with copper and creating impossibly smooth surfaces made black and shiny by the flames of the fire.

That trip to Thailand, far outside of my comfort zone so many years ago, is largely lost to my memory now--except for this smooth, black begging bowl sitting on the corner of our piano.

Bowl on Tapa Cloth

To be honest, what strikes me now about this bowl--and the Tapa Cloth from Fiji that it sits on, for that matter--is that there is no going back to that moment in my youth when a pilgrimage for a handmade alms bowl seemed so very important. Life just keeps moving forward, even if in not-always-perfect fits and starts. I am sure that my 20-something year old self could have never, not in a million years, imagined that the handmade alms bowl she spent hours searching for in the tangled streets of the seemingly forgotten neighborhoods of Bangkok would become the repository for the mismatched pieces of forgotten kids' toys. The bowl, it turns out, makes a pretty decent junk drawer.

"Junk bowl"

What does it mean when the sacred object of one's youth becomes a catch-all for ribbons and pens and sundry knickknacks? I don't know, really, but, somehow, this bowl full of toys strikes me as the perfect metaphor for what it's like to become a parent.

In Which an Old Post Reminds Me of Some Eternal Truths

Today Facebook took me back to this day in history in 2009. That was the day when Sky's private preschool sent home a note telling us that he couldn't go on the school field trip to choose a Christmas tree unless I, his mother, accompanied him. The school, which was closely tied to the college where I was teaching, knew that I worked full time. They also knew that Sky's dad was our stay-at-home parent. Surely, no one was stupid enough to put something so sexist and potentially racist in writing, I thought. This was the question I asked my FB friends in the post that popped up on my wall today.

To try to understand what the note could possibly mean, I scheduled an appointment to talk with the head of the school. Surprisingly, she actually WAS being both sexist and racist. She didn't realize it, of course. But when she said, "Sky might just respond better to you on the trip than he does to his dad" and "Sometimes we feel like we can't communicate as clearly with Ren as we can with you," I tried to imagine a situation in which she would send a note to a family telling them their child couldn't go unless his dad would take the day off accompany him or a situation in which she would tell any other family in the school that communication was difficult. I couldn't imagine it, though. We were being triply marginalized--for having a difficult child, for being a non-stay-at-home-mom family, and for (some of us) not speaking English as well as a native speaker--and it broke my heart.

Sky was my first kid, so it took me a little longer than it should have to realize that private school was not the place for him. I really wanted it to work and felt more upset about taking him out of the chaotic, child-driven, project-oriented school than I ever should have. This was pre-diagnosis, though, so I try to cut myself some slack. Learning how to parent any child takes time, and it takes just a little longer if your kid is on the autism spectrum.

Facebook's time hop reminded me to tell you this: It will be okay. Go with your gut. If a place doesn't seem right for your child, it probably isn't, no matter how good it looks on paper. The road is long, and it can seem daunting at times; just take things one step at a time, and eventually you'll find yourself some place pretty darn good.

Today, six years later, Sky is thriving in a public school a few miles from our house. His teachers and IEP support team are Ah-Mazing. Not only is he mainstreamed in honors classes, but he loves going to school. Most importantly, though, he has friends and a true sense that his quirkiness is A-OK because there are people around (usually hiding so far back into the wings that he can't even see them) who understand where he's coming from and accept him just as he is.

Oh, Hi! I Didn't See You There

Like I do at the beginning and end of just about every semester, I disappeared there for a bit. You know the drill--I'll tell you I'm sorry (I am) and that I'll try not to let it happen again (even though we all know it will).

ANYWAY, for today's post, I present a little photo essay I call: "Life at the MOE House in Four Pictures."

Picture #1

You know, once we got out of that infant diaper stage, I thought we'd never buy another tube or tub of Aquaphor ever again. I mean, there's petroleum jelly and coconut oil, not to mention all sorts of organic and natural remedies for irritated skin. Besides, the kids have all developed those tough outer layers that come from summer days playing in the sun and sand and winter days in the snow and cold. But then we experienced the Great Chapped-lip Extravaganza of 2014-15. So, after months of trying just about everything with limited success, in an act of total desperation, I dug out a tiny long-forgotten tube of this stuff from the bottom of Stow's old diaper bag and gave it to Sky. 

It worked immediately. 

I guess this just goes to show you that A) if it works on a baby's butt, it will work on lips (eeeww), and B) sometimes it really IS better not to clean out the diaper bag (but, other times it's not, so I am totally leaving that decision up to you).

Picture #2

One of the things you learn when you have a kid on the autism spectrum is that sometimes lining toys up can be a bad thing. Every parent questionairre we answered about Sky asked us if we'd noticed such behavior. We hadn't, of course, because we hadn't suspected autism or known that such behavior can indicate lack of flexibility, inability to adapt, or poor imitative play skills. Now we know, though, so every time Stow comes up with one of these lines of toys, I panic just a smidge. The crummy part is that all toddler/preschoolers put their toys in a line from time to time, so it's difficult to tell. We're pretty sure Stow's just making an emergency vehicle parade here. I mean, the kid has some awesome creative play skills and our walls have enough dings in them to attest to his tendency to drive these cars and trucks all over the house. My heart still skips a beat every time I come upon a scene like this, though. 

Picture #2.5

In my defense, here's a comparison from Sky (with his Lego mini-figures circa 2011). Of course, we just kinda thought he liked to look at them all (which was true), but it turns out that these are in a specific order, and back then, if you moved them, he would insist on "fixing it." I didn't pick up on this AT ALL until one day when the OT working with Sky rearranged a couple of these guys when Sky wasn't looking. While he didn't freak out, Sky did nonchalantly put them back in the exact same order no matter how many times the OT moved them. Later, the OT asked Sky to close his eyes and tell him which guy was where in the line. Sky promptly listed the guys in order, by set, based on the date they entered our household.

So, yeah, I'll be happy when Stow outgrows this particular toy-lining phase.

Picture #3

If you've been reading this blog much at all, you know that we are always and continually on a quest for a system of reward that is intriguing enough to motivate the kids, flexible enough to meet our varying disciplinary needs, and simple enough that I don't completely fall off the wagon by the third day. A friend introduced the marble jar idea to me. I mean, I've heard of marble jars before, but this one is different. This is our family marble jar. Each of us has a different color. Good choices earn marbles. Bad choices lose them. When we hit the goal line, we'll decide on a shared activity to do in celebration. Here's why I like this (and why I think it's working so darn well): the kids have to work together to reach the goal. Instead of getting on each other's nerves and egging each other on, they have started to help each other earn marbles. The marble jar has even motivated them to look for the good in each other (in hopes of scoring a marble on their sib's behalf). Because Ren and I can also earn (or lose) marbles, they have started to think about (and understand for the first time) the ways he and I help out, too. It's pretty awesome, and I hope their enthusiasm lasts until the end even though that milk bottle is A LOT bigger than it seems.

Oh, and in case you're wondering, Ren earns most of his marbles by refraining from farting during dinner. I'm thinking of having t-shirts made: THE MOE FAMILY: Keeping it Classy So You Don't Have To.

Picture #4

Speaking of classy. This is a picture of Ren's Saturday-morning breakfast. Notice the Ghiardelli mint-filled dark chocolate on top? When I saw this, I knew that he had finally crossed over to the dark side. I mean, I can't imagine any other Japanese person I know eating this for breakfast. I'm not sure whether I should be proud or just a tad disturbed. 

An interesting but totally relevant side note: I moved this scrumptious-looking bowl of food up into the cabinet so that our resident human vacuum/ninja child wouldn't get his hands on it. Ren didn't find it until a few days later. When he did, he ate it, though. Maybe that's the part that should disturb me....

Nah.

Fender Bender

You know what's at the top of the "101 Things a Mom Doesn't Want to Hear on the First Day of School" list? Well, pretty much anything that comes directly from the principal, and especially anything that has to do with bus/car collisions.  (For the record no one was hurt and Sky thought the extra time sitting on the bus was a great way to make new friends and  "memorize the inside of the bus").

When Sky's principal called me just 90 minutes into the new school year, it didn't help my nerves. I mean, I was already a bit anxious for the kids --getting ready for a new school year takes mental, physical, and social work (as you probably remember from past posts here, here, and here). The new school supplies, shoes, and haircuts are the easy part.

For Pink, a new school year means contacting the principal who puts me in touch with her new teacher so we can talk at length about the various contingencies necessary for avoiding unwanted peanut exposure in the classroom. It also means making a special trip to meet the school nurse to make sure she has all the appropriate paperwork and protocols in place. And, of course, these conversations force me to think realistically about all that could possibly go wrong with my severely allergic child in a school full of peanut butter eaters (okay, so they don't ALL eat peanut butter, but it sure feels like it when I start to think about what could happen if someone touches my kid with peanut butter on his/her hands). In case you're wondering, this is why I maintain a healthy sense of denial about Pink's allergies (while also keeping an epipen handy, of course.) The start of school means working through all of my anxieties about Pink's allergies. I get that forcing kids to eat their peanut butter at home is inconvenient and unfair, but it sure would help lower my stress level if they did.

Meanwhile, for Sky preparing for the new school year is an ongoing process. Before the last school year ended, Sky worked through social stories with his speech therapist and visited his fourth-grade school building with a group of his peers. For weeks, we've talked about the new school building, his new teachers, the new principal, and his new bus route. We've brainstormed about what to do if kids are mean or call him weird. All summer (except for when we were in Japan), Sky had weekly hippotherapy and behavioral therapy sessions. Sky works ceaselessly to fit himself into the neurotypical world around him; sometimes his hard work pays off, and sometimes it doesn't.

Every year, in the days before school starts, we set time aside for me and Sky to meet with Sky's new teacher. For a kid with difficulties processing social cues and transitioning into new environments, meeting with the teacher and talking about his concerns ahead of time always helps. It's different with each teacher, of course, but this year, Sky's new teacher met with him for nearly an hour, taking a break from her final preparations to tell him about the classroom, to answer his questions, and to help him start to understand the routines of fourth grade. We also established the best means of home-school communication and discussed how we would handle any concerns about his IEP, incidents of bullying, or any other issue that might arise (and believe me when I tell you there's no limit to the kinds of "issues" Sky can have in school). Sky left that meeting feeling excited and ready for fourth grade (and I left wondering how many other parents spend so much time with their kids' teachers before the first bell on the first day has even had a chance to ring).

Then, there's Stow.

Believe it or not, the baby started preschool--the early childhood program at the local elementary school to be precise. I actually thought I'd handle this transition fine. I mean, Stow has been receiving therapies since he was 1, and the early childhood program in our town is known to be the best around. All of our transition and IEP meetings went great, and I am sure he's where he needs to be. In other words, I didn't do much of anything to prepare Stow for the first day (except get his haircut and buy him some shoes) because I knew he was ready.

But, I didn't really realize that I wasn't.

Not long after Sky and Pink's bus pulled away, Stow's little preschool one came. He climbed right on, plopped down in a seat and waited patiently for the driver to click his seat belt into place. I don't know if he realized he was going alone (though I guess he probably did since he's seen his big brother and sister get on the bus hundreds of times), but I do know that he was grinning ear to ear as the bus pulled away.

And, much to my surprise, I totally lost it. I am so NOT sentimental. I have no idea why I cried. I suppose it had something to do with the expression of eager anticipation on Stow's face as the bus drove away.  My realization that my little guy who doesn't talk a lot was going off into the great big world on his own didn't help. Then, there was the realization that my baby isn't really a baby any more, and there's not a darn thing I can do to get a single minute back. Not one.

See, my kids? My kids, they keep going out into the world. They don't let the allergies or the autism or the anxieties hold them back. They go out into the world dancing, laughing, and making the absolute most out of it. Letting them find their own way (without letting the fear of all that could go wrong consume me) is not easy, but I know it's my job to let them go. I'm still figuring out how to do that without it breaking a little piece of my heart every time they go. All I can do, really, is believe things are going to be okay, even if there is a fender bender or two along the way.

The Things I Learned and Re-learned While Traveling Internatinoally with Three Small Children

1. When booking a Japanese hotel room online, avoid places that claim to be only for foreigners or at least ask them to send the dimensions of the room you book. Otherwise, you end up with a "triple" room that looks like this:

Three year-old included for scale.

For the record, I cried when I saw this room, but not before Sky had a massive meltdown over its minuscule size. In case you're wondering, the meltdown occurred in the hallway because although he could look inside and see how small the room was, it took time for all of us to squeeze in with our luggage.

2. It really is possible to get three children and a stroller, four rolling suitcases, four backpacks, and a man with a cane on or off the train during the 30 to 60 seconds the doors are open, but it may require yelling.

3. When traveling through Japan during rainy season, you will get rained on, the children will splash you with puddles, and their umbrellas will turn into makeshift water funnels, dropping streams of water into your shoes.

To make yourself feel better, you should have your children re-enact scenes from movies they like.

4. There can never be too many convenience stores.

5. GFCF is not as easy as it should be but also not as hard as you might think. On the one hand, this:

See all the yellow arrows? They are pointing to the clearly-marked list of allergens found in each of the dishes. Most restaurants have this helpful information, so that's good, right? Well, kind of. You see, even though many restaurants are savvy enough to make sure customers know what's in the food, this doesn't actually mean they offer alternative options. I mean, I'm glad to know all of the things my kids can't eat. I just wish there was something they COULD eat. And, if you've spent any time in Japan, you know that asking them to simply remove an ingredient to make it allergy friendly doesn't always work. McDonalds absolutely would not take the buns off the hamburgers I ordered which meant that the kids whined and cried about not being able to eat them. Telling people the kids were allergic sometimes made things worse as there is clearly a protocol in place for making sure that moms of kids with allergies take full responsibility for possible cross contamination. On one flight, I had to tell multiple flight attendants that I understood that my choice to have my kids eat the food was solely my responsibility.

6. You can never have too many KitKats.

Image from: www.mylostintranslation.com

7. I'll never stop missing Japanese-style customer service.

Each time we flew on All Nippon Airways, they gave each kid a toy. They also brought around warm wet towels for wiping our hands, plenty of extra wet wipes for eating with children, and hot soup broth as one of our drink options. Gas station attendants came out to greet us and make sure we knew how to pump our own gas. Hotel and restaurant staff walked us to the door and bowed us away. When Stow hit his head, not only did the concierge bring him ice, but she also checked on his well being the following day and every day after that until we checked out of the hotel. Every purchase was carefully wrapped, and wrapped again and bagged, and at one point, when I told the person at the register I was in a hurry, she called two people to help and still apologized for taking too long to wrap. I could go on, but you get the point.

8. It's still nearly impossible to go to a hot spring bath with a preschooler.

9. You can never get enough bad English. This sign took me awhile to figure out:

I had to read the Japanese to understand they meant no beer or wine and not necessarily no illegally produced, low-quality spirits. I assumed, since it was the Hyatt in the heart of Tokyo, that they probably didn't have a significant backwoods moonshiner problem, but then again, you can never be too sure about these things.

10. If you carry your things through US customs in a cardboard box, you will be searched, even if the thing in the box is a heated toilet seat in its original packaging.

This was not the first time we've been stopped for carrying a box of stuff (link). It was, however, the first time a customs agent laughed so hard at me that he waved us through while clutching the stitch in his side.

Rainy Season

We made the bad good decision of coming to Japan during the month of June.** June is rainy season in Japan. You might think you know what that means, but if you've never experienced it, you don't. My first rainy season back when I came to Japan as a junior high English teacher, everything molded. My clothes, my shoes, and even my books. Soon enough, I learned to run my AC non-stop and to buy little plastic boxes full of water-absorbing material to help suck the water out of the air.

The next rainy season, and all rainy seasons after, nothing else molded, but I never quite figured out how not to get so wet. This was especially true of the rainy season we lived in Tokyo. Sky and I made the trek to his preschool at 8 a.m. each morning. On days when it didn't rain, we traveled by bicycle. On the days when it rained, however, we walked. I refused to be like the other moms who wore fashionable galoshes (as if there is such a thing), and instead opted for water-resistant hiking shoes. The shoes actually kept my feet pretty dry under normal circumstances, but they could do nothing to prevent  the dousing of my lower extremities with the giant splashes Sky made in every puddle between our house and school. They also didn't help much with the water he consistently dumped from his umbrella into my shoes. By the time I got Sky to school after our 7-10 minute walk (the time varied based on the number of tempting puddles), I was always thoroughly drenched.

Needless to say, I've never been a fan of rainy season, which makes the timing of this trip somewhat ironic. I did what I could to be prepared for it. I made sure all the kids' clothes were light-weight and quick drying. I packed a pair of Crocs for each of them to wear on the days we'd be traipsing around in the pouring down rain. I brought umbrellas and light rain jackets. I packed waterproof, quick-drying shoes. Still, nothing can quite prepare you for three kids carrying umbrellas making their way down a crowded Tokyo sidewalk. Really.

Fortunately, several days into our stay, we headed north to Akita where the rainy season hadn't started yet. We managed to squeeze in four glorious, rain-free days before it caught back up with us. Once it did, though, Ren and the kids were stuck inside our fairly tiny apartment*** while I taught my class. The only thing worse than wrangling three kids carrying umbrellas through the pouring rain is doing it with a bad back (or so I assume).

The first day, we were all optimistic that books on the Kindle, origami, and plenty of drawing paper and pens would keep the kids busy. That lasted for about seven minutes. Soon, we had this:

The problem with this, however, as Sky pointed out, is that there is only so much kid-appropriate TV one can access (at least without a pretty decent cable package) on Japanese television, so soon the kids were forced to break free from the screen and think outside the box (or inside, depending on your preferences):

Eventually, you run out of boxes, though. And, then, there is only becoming one with the environment--giving into the weather and going with the flow (of water down your back from one of the kids' mishandled umbrella). Hopefully, at least, you can do it in style and maybe even channel Totoro in the process:

A neko bus would TOTALLY make everything better, rainy season or not.

**Flying to Japan in early June is at least $400/person cheaper than it is in July. There are five of us. The math for going to Japan later in the summer is not in our favor.

***To be fair, the apartment was actually pretty huge by Japanese standards, but we were still 5 people in three rooms (if you include the bathroom) for eight days.

In Which I Go to a Kindergarten Concert and Have an Epiphany

Pink P’s kindergarten concert was today. For more than a week, she repeatedly explained to me what kind of clothes and shoes she was supposed to wear and how she wasn't supposed wear a dress unless she also wore tights or shorts under it. Before we left, she also reminded me that she needed a flashlight and that we should get there at least 15 minutes beforehand to find a decent seat. In short, she was completely and totally prepared.

Sky's concert was back in December, and our "preparations" was much different. First, were the repeated negotiations about why it was necessary to stand and sing in front of a crowd of total strangers. Then there was the social story about standing still, ignoring all the distracting people in the gym, and what he would be doing in the minutes before and after their performance. There were also numerous e-mails checking and re-checking that it was okay for him to wear what he planned to wear for the concert.

On the day of the concert, I had a hard time enjoying it. Waiting for his class to take the stage, I worked to repress memories of school shows past. Of being pubicly shamed during his preschool show when he did things beyond embarrassing and all the other parents stared at us. Of being told by teachers that he should know better by now. We understand a lot more now than we did then, but concerts are still hard for Sky. For us.

When his class came out, I had to force myself not to slide to the end of my seat and grip the edge of the bleacher. As they sang, Sky bounced around, shifted from side to side, scanned the faces of the parents packing the gym, played with his hands, talked to neighbors, and probably remembered to sing about 40% of the time. During his class’s special performance, he stood distractedly twirling his xylophone mallets (instead of using them to make music like everyone else in his class was doing) as he intently counted the lights hanging from the ceiling in the gym. At one point, Pink P leaned over and asked in a ridiculously loud voice, "Mommy, why is Sky doing that?" Of course, there was really no good answer, particularly since any explanation I could have offered would have required me to yell over the din of whatever song they were singing. Sky was doing exactly what he needed to do to get through this. And, in the end, he did really well, even if his "really well" looked a lot different than everyone else's.

Sitting through Pink P's concert today was an entirely different experience. I didn't slide to the edge of my seat, heart pounding, willing her to make the right choices and to keep her impulses under control. I wasn't trying to mouth the words so she could sing along, flashing her hand signals meant to help her stay on track. I wasn't dreading all the possible things that could go wrong. I was just sitting there peacefully watching a hundred six-year olds sing about friendships and mothers and all the beautiful stars. Pink was engaged and enthusiastic (and awesome!). But, what was so extraordinary about her concert was that it was all so completely ordinary.

As I sat thinking about this, I started to pick out the kindergarten kids who were like Sky --the girl whose eyes wandered and who seemed to be dancing to an entirely different beat, the boy whose sound effects could sometimes be heard over the singing of his classmates. I didn’t notice them at first, but the more I thought about what it’s usually like for me to sit through one of these programs, I started to wonder which of the moms and dads around me were sitting on the edges of their seats silently willing their kids to just get through this thing.

I looked around to see if I could spot those parents in the audience, but as I watched the faces of the other moms and dads, I found something unexpected, instead. I found that in that hot gym filled to every crevice by the cacophonous sound of 100 kindergarteners singing, everyone was focused on his or her own kid. No one cared that the one girl kept lifting her shirt or the other boy kept flapping his hands. Most people just seemed to be enjoying the music.

Here’s hoping some day soon I figure out how to do the same!

Update Number Twenty-seven Zillion

Okay, not really, but it's been awhile since I posted an update on all of our various endeavors, so, here you go!

It has been 278 days since we moved, and, drum roll please........ I finally managed to hang pictures on the walls in Sky's room! The quality of these photos isn't great because it turns out that "midnight blue," or whatever the heck that color on the walls is called, doesn't work well when sunlit and then auto-smart-fixed on Photoshop. But you should definitely ignore all that and admire my wall-hanging skills.

You should also know that Sky cleaned his room just so I could take and post these pictures. He hopes you like his staging.

Second, after much pain and suffering (and approximately a bajillion phone calls), we may have finally managed to get Sky hooked up with some OT and behavioral therapy. It. Was. Not. Easy. And, it's way too early to see how it will go, but it's a (desperately delayed to the point of being ridiculous) start.

Did I mention that the new OT is hippotherapy? It's pretty awesome because it forces Sky to (naturally and willingly) keep tight control over his various impulses and sensory responses.

And the behavioral therapist is a play therapist--also something we didn't have access to before we moved. Again, the jury's still out on the effectiveness of this, but if nothing else, they all love the sand table. (Sorry for the fuzzy picture--this is what happens when I try to photo under cover).

Finally, it has been 498 days since we went gluten free. I've written about the ups and downs of going gluten free here, here, and here. But what I haven't told you is that since we went GFCF, Pink has not had to go to the hospital for her asthma even once. She has also backed off the serious meds she used to take. Now she's just on a mild maintenance medication and only taking half of the usual dose. Plus, she's needed her emergency inhaler only 6 times in the last year. Pre-gluten free, Pink was hospitalized twice a year and on steroids at least once every three months. She needed her emergency inhaler almost daily. The post-GFCF change is nothing short of miraculous.

Gratuitous bento shot.

Gratuitous bento shot. (These two, I made).

Stow, meanwhile, no longer sports a bloated gut, and Sky no longer randomly vomits. There are behavioral and developmental changes going on here, too, but, to be honest, even without that, the reduction of asthma emergencies and random yet persistent stomach issues has improved the quality of life at our house tremendously. Gluten free is a hassle, and it's expensive, but I am sure it has paid for itself many times over just in the number of averted trips to the pediatrician or ER.

Gratuitous bento shot.

Gratuitous bento shot (and these two were made by Ren, a.k.a. Mr. Overachiever)

Postscript

Yesterday, Sky went back to the after-school art class for the first time since being "dis-enrolled" from it. He went prepared with his visual cue card, a container of gum, his sketch pad, and a note to his homeroom teacher reminding her to send him to the art class instead of to the bus. He came home excited that two friends from his class are participating this session. Other than that, this class was no different for him than all the others. 

Later that night, I got the following message from the program director:

Dear Moe, 

Wanted to let you know Sky did a great job today, I was very proud of him!  Miss S was out sick today, and I was available to teach the class.  He politely asked me about the gum just before class and half way through, he asked to get another piece, which was no problem.  I think it really helped.  He really only blurted out once. He got a little silly a few other times, but really not any more than some of the other kids. It's cartooning so we expect a little more silliness. He fell off his chair once, but it didn't appear to be attention seeking, I didn't make a big deal about it. When I was collecting sharpies, he did throw his sharpie towards me.  He realized his error right away and said "I should have said catch", I agreed and suggested handing it to me next time instead. He didn't use his sketch pad until he was done with his picture.  He doodled on our black scratch paper between steps, which is fine.  He went ahead drawing instead of following the steps - but that's perfectly fine too. I could tell that he was really trying to control himself and to please me.  He was sweet, polite and looking for reassurance, which I gave him.  I did have him sit up front, which he didn't seem to mind (I had name cards already in place when the kids came in, so it was assigned seating for everyone). When it was time to color he shared markers with the girl next to him, they got along really well.

I really appreciated that she took the time to let me know how it went. Thing is, though, I'm pretty sure that's what he's been doing all along. He never keeps it all together, but he cares about what you think, and he tries HARD.

Isn't it amazing what people can see if they take the time to understand difference as something other than annoying? If people take the time to look--you know, to really look--they can see Sky for who he is. And, then they figure out he's not that hard to teach after all.

When teachers get Sky: This one let him play with the piano cover off so he could satisfy his strong need to see how the piano works as he plays. I remember entire lessons (lessons!) lost to the denial of his unrelenting need to look inside the piano. 

But how do we teach this? How do we find teachers like this piano instructor who are willing to think outside the box? How do we help people see neuro-diverse kids and kids with learning differences for who they really are? I'm not sure I know the answer, but I do know that it's my job to advocate and to educate until things change. 

It's all our jobs, really.

(Read the story from the beginning.)

What to Do if Your Husband Vacuums too Much and Other Useless Metaphors (My Messy Beautiful)

The first year of our marriage, we fought about vacuuming. Ren would often come home from work around midnight and jump straight into his cleaning routine. It didn't matter that his daughter and mother were sound asleep in the other room or that I had the futon spread out and was snuggled deep under the covers trying to catch up on one American TV program or another. He had to clean. I'm pretty sure I was the only newlywed in the history of the universe to complain about her spouse doing too much housework. But it annoyed me, and I hadn't yet come to appreciate how having a kid with asthma and allergies alters your cleaning habits.

I don't remember a lot from that first year other than the arguments about vacuuming, trying to figure out how to parent a less-than-willing Japanese tween, and struggling to make sense of what Ren's 75 year-old mother was telling me to do. I also distinctly remember wanting to give up on the marriage. Lying awake each night on that mat on the floor, wrapped in the warm smell of the tatami, with the lullabies of the cicadas in my ears, I felt alien...uncomfortable in my new skin.

At the time, a good friend of mine said, "It took you two years to decide to marry him. You need to  give it at least that long to figure out if you want to separate." Looking back now, her advice seems pretty arbitrary. Useless, perhaps. But at the time, it made perfect sense. So, I stayed, and we figured out how to communicate over and beyond, below and enmeshed.

When you are from two entirely different countries, speak two very different languages, and are the products of two completely different generations, you learn you have to work hard to meet in the middle. You also learn that life together comes with its fair share of of missed connections. Those early years, married to Ren and living in Japan, I discovered that, a lot of the time, marriage is just about pulling yourself up out of the futon each morning and trying again.

*****

Last weekend, we spent the night in Chicago. By the second day, Ren's back hurt so bad, he didn't want to walk. So we decided that he would drop me with the older kids at Water Tower Place while he and the baby found a quieter, more peaceful (and cheaper) place to park. Since we only have one cell phone, the plan was to meet on the side street next to Water Tower in an hour.

Or, at least, that was my plan as I thought I'd conveyed it to Ren before we parted. Ren, apparently, had a different plan.

Our meeting time came and went. Pink P (6) and Sky (9) found the cutting, cold wind difficult to bear, so we walked back and forth between our meeting place and a space just inside the door overlooking the spot where I expected Ren to appear at any moment. Over and over again, I ventured out into the cold with two miserable kids only to find the street empty and to feel the uneasy knot in my stomach getting bigger and bigger.

Where was he?

Having a kid with Aspergers means you can never let on that you are worried. Or scared. Or upset. Thing is, keeping your cool gets harder when you have a 9 year-old standing next to you outlining in great detail all of the possible ways things might have gone wrong. Sky was sure Ren had forgotten us. Pink was too tired to take another step. Both kids were hungry and tired of carrying their stuff.

When Ren didn't show up on the side of the building, we checked the back and then the other side. We walked three blocks away from Michigan Avenue, toward the lake, thinking he was most likely to have parked somewhere over there. Round and round we went. Ten minutes. Twenty minutes. Thirty minutes. Forty minutes.

Where WAS he?

Just as I was about to give up and try to find a hotel for the night, just as I made one last sweep around the back of the building, Ren pulled up.

And he was mad.

"Where were you?!" he asked. "Why weren't you where you said you'd be?!!"

Thing is, I was exactly where I said I'd be. (I mean, really, what sense would it make for me to go anywhere else, especially when it's 30 degrees outside?). But I could tell that didn't matter. He hadn't heard me. He'd been too distracted by the city traffic and his thoughts about places to wait for us. The whole time I was searching for him on the sides and back of the building, he was just around the corner in front. For forty minutes, we completely missed each other. And the whole time we were only about 100 feet apart.

*****

As soon as I understood that we were all okay and allowed my anger to dissipate, I realized those forty minutes we spent around the corner from each other could serve as a good metaphor for our marriage. When life gets hard--like it has been lately with a move, a third back surgery followed by a trip to Mayo and then the realization that Ren will probably never regain full mobility, along with the constant joys and sorrows that seem to accompany life with kids on the spectrum--I have to remind myself to actively communicate with my husband. I also have to keep telling myself that when all else fails, sometimes the most important thing I can do is pull myself out of the futon and keep on moving forward.

This essay is part of the Messy, Beautiful Warrior Project — To learn more, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!

Groundhog Day

In the middle of December, Ren went to the spine surgeon for his six-week follow-up appointment. By then, he was past most of the hard surgery recovery but still experiencing enough leg numbness and pain for the doctor to postpone physical therapy and prescribe six more weeks of the same restrictions: no bending, no lifting, no twisting. The ol' BLT as we call it. The doc might as well have told Ren not to breathe. In the car on the way home, I thought of Punxsutawney Phil and his blasted shadow. We'd just been sentenced to six more weeks of winter. 

The news disappointed us. I wasn't sure Ren could sit on his hands for six more weeks, and I certainly didn't know if I could pull off another month and a half of single parenting. With no other option, we hunkered down to face the long, dark winter and somehow managed to have a relaxing Christmas and a fun winter vacation with the kids despite the fact we couldn't go anywhere or do anything. 

What we tell ourselves is that the suffering is temporary. That soon things will get easier. That even when the groundhog sees his shadow, spring isn't far behind. 

Spring has to come eventually, right?

But then it happened just like it happened before--Groundhog Day. Not Punxsutawney Phil's Groundhog Day, Bill Murray's. Life began repeating itself, and not in a good way. For weeks the back improved, and then one morning it didn't. In fact, it got much, much worse.  Just like it did the two times before.***

And, here's where my narrative breaks down a bit. See, I'm not sure how to spin this particular story. It feels a bit like a tragedy, but one that no one would really want to read. There are no suffering children or underdog heroes, who, though crushed beneath the weight of life's injustices, manage to persevere, overcome, and somehow change the world in the process. There is no real moral to this story. There is only a somewhat average not-so-all-American family choosing to keep showing up and to keep moving forward. 

Relentlessly. Repeatedly.

And, you know what? In the end, I really do believe that, despite the maddening repetition of some pretty unpleasant stuff, it will be fine. I don't know what that fine will look like yet, but I'm willing to bet, it's going to look different. 

*** I'm resisting the urge here to go into intricate detail about symptoms, procedures, and prognoses. Ren's not okay with that much sharing, so I won't give you all the gory details. I will say, however, that the beginning of the end was October 2011, and since then, we've seen skilled, conservative doctors who have done excellent work on a very bad back. 

Adventures in Bilingual Parenting

When we moved to Japan when Sky was three, he called me "Mommy." By his second week of preschool, he was calling me "Mama." Soon enough, I became "Okaasan." Because we'd always spoken Japanese to him, we assumed he understood it and could speak it. We may have been wrong about that.

His first week at Japanese preschool, when he still called me "Mommy," Sky managed to lock everyone out of  his school. It's still not entirely clear to me how he did that, but at just three years old, he was stealth enough to sneak back into the school building, close the sliding door, and apply the lock while everyone else (including all of the teachers and the head nun) was outside enjoying recess. It must have been interesting for a sensory-motivated kid to see so many animated faces mouthing Japanese words to him through the window. Fortunately, he unlocked the door before they had to break the glass.

That's when we realized he might not understand as much Japanese as we thought. During summer break of that year, we spent a lot of time practicing simple greetings: ohayoo gozaimasu, konnichiwa, arigatoo gozaimasu. His teacher thought this was the key to his becoming conversant in Japanese. I'm not sure it was, but Sky did become much more fluent with his friends at school, and soon enough, he was calling me Okaasan.

Gratuitous "awwww" shot of Sky using his Japanese to woo his preschool "girlfriend."

I've never felt like an Okaasan. When Big Sissy was still in junior high, before we all moved to America the first time, Ren would refer to me as Okaasan, but Big Sissy didn't call me anything. Somehow that word didn't work for her foreign stepmom, at least not then. Once we moved to the US, she slipped comfortably into calling me Mom. Okaasan has always seemed unnatural to me.

On this grey, snowy morning in the Midwestern United States, as we all sit by the fire to warm ourselves in this bitter cold, I listen to Ren building train tracks with the kids, speaking to them patiently in a Japanese that seems foreign to them. And I am reminded of these moments past when I was Okaasan and not Mom. I think of the year or so we lived in Japan and how strange it felt to have my own son speak so fluently in a tongue that wasn't my own. And I am thankful for Ren's persistence as the kids vacillate between resistance and acceptance, incompetence and fluency. Most of all, I'm grateful for his patience as they slowly but gradually figure out how to go from calling him Dad to Otoosan.