Thursday, July 26, 2018

Days Like This

It's 10 pm, and I didn't manage to have dinner so the lone beer I drank is hitting me a littler harder than it normally would. My day started before 6 am when I heard the youngest drop the toilet seat and lid in the guest bathroom right next to our bedroom. Since the last conversation we had before he went to sleep the night before was about the importance sitting as a way of avoiding a major mess (I know, I know, it's weird, but nothing else works), the sound of him dropping the lid jarred me from my sleep and into a state of instant irritation. I didn't want to start my day mad, though, so I just tried to pretend I hadn't heard. The next noise that interrupted my already interrupted slumber was the creaking of the door to the basement. This one was harder to ignore because I knew that meant Stow was going down to play with Taro. My exhaustion helped me stay in bed a little longer as I prayed the kitten would safely endure Stow's excessive cuddling while I squeezed in just a bit more sleep. At 6:30, I got up and noticed that Ren was in no way fit for the day. He could barely make it from the bed to the bathroom three feet away, and he was grumbling under his breath in considerable detail about the horrid state of all the things. When Ren slips into this kind of existential despair, especially if the slip is paired with an obvious increase in pain or a sudden inability to walk well, it's hard not to panic. Normally, those two things together almost always mean something is seriously wrong with the spine.

"You can sleep more," I tell him. "I'll handle the morning routine."

Our lives are HARD when Ren and I are both in decent form. When one of us is falling apart things become virtually impossible. By the time I got out of bed, Stow had eaten half a bowl of cereal that included leftover stale GFDF vanilla Oreo cookies and that might have also included syrup if Pink hadn't intervened when she did. Pink was in the middle of making some kind of lemonade concoction that included pure lemon juice and honey. Because Stow was so engrossed in his LEGO creation AND the kitten, nothing I did could pull him back to the kitchen table for the rest of his cereal, not to mention the fresh fruit. And, of course, nothing could persuade him to brush his teeth, put on some socks, or make sure his swim suit was in his bag and ready for camp. As I cut fruit and made lunches, I also called out orders that went entirely unheeded. At 8, when we needed to be walking out the door, Pink hadn't combed her hair or taken her asthma medicine, and Stow still didn't have socks or a swim suit. I ran up to grab a brush, socks, and suit, and then down to grab my work stuff before heading out to the car to wait. By this time, Ren was upright and on the couch, but he clearly wasn't ready to take on any of what was happening.

Somehow I managed to get the kids to camp on time and with lunches and water bottles in hand. From there, I headed straight to a teaching seminar that would take up every single minute that the kids were in camp. I went straight from the seminar to pick them up, and the moment Pink saw me, she told me about a peanut-throwing food fight that happened during lunch. Since the participants were all friends of hers, she couldn't believe they didn't understand about her allergies. And, because they were her friends, she also didn't want me to tell the camp leader about it.  When Stow made his way to me, his camp counselor was in close pursuit. She wanted to make sure I knew that he "tackled a girl and it wasn't even like he was playing" and that "it took him a long time to agree to apologize." I knew Stow was feeling overwhelmed and that he normally doesn't attack his peers, so for the life of me, I couldn't figure out the right response to the college kid who was giving me such meaningful looks as she told me all of this. So, I ended up talking to the camp leader about Stow (but not Pink per her specific request--ugh, teaching them agency and independence is HARD). He was much kinder about the Stow situation. "He'll get it," he assured me. "Besides, these counselors need to start to understand that there is big world out there with many different ways to think about and do things." It'd be great if 7 year-old Stow could help some of the counselors learn this, but I doubt he's the appropriate messenger. Besides, I really just want him to make it through the day without too much drama or too many blows to his already cracked and fragile self-esteem.

We rushed home from camp to make dinner to eat in the car on the way to karate. During the hour or so that I was home, every single member of the family needed to talk to me about every single thing all at once. My phone call with the vet's office about our sneezing kitten went long, so we barely made it out the door in time to go pick up Stow's friend who I'd agreed to take to karate. We managed to forget juice boxes, seaweed, and hand wipes. Pink, Stow, and Stow's friend ate rice balls as I navigated the construction between our house and karate. After thirty minutes of driving, five minutes of waiting, and forty minutes of karate, we were back in the car and headed home. Stow's friend's mom was running late, but given the how the day had gone and how tired Stow was, I decided to drop Stow and Pink off at our house before running Stow's friend across town. I called Ren, and he agreed to this plan, which I then communicated to Pink and Stow. Looking back, I should have just kept them in the car, but in my brain's version of how this would go, Stow and Pink walked calmly into the house, took showers, brushed teeth, and got into bed.  Of course, that's not how things went. As soon as he walked into the house, Stow offered Ren a fake news version of what would happen next. His version included no shower and lots of TV.  Ren knew Stow's version was fake, but when he pushed back on Stow's story, Stow lost it. His degree of tiredness PLUS his degree of out-of-sync-ness, which has been the bane of our existence this summer, triggered a kicking and hitting fit that included forceful shoves to Ren's head. Stow doesn't get how seriously he could hurt his dad.

When I was about fifteen minutes away from the house, I started getting texts from Sky detailing the meltdown and phone calls from Pink. Eventually, Ren called to tell me I needed to be home RIGHT NOW, only he didn't say these things calmly or nicely or indicate in any way that he understood why I wasn't currently there. None of these exchanges made the problem look solvable without some kind of space travel and a dry martini. And, I don't even drink martinis. By the time I got back home from dropping off Stow's friend, it was almost 9. Everyone was mad and no one seemed capable of providing anything close to a coherent narrative, much less a sense of perspective. Apparently, Pink and Sky didn't hear when their dad called for help in keeping the kitten out of the fray when Stow was melting down. I grounded Stow and relocated everyone's devices to the kitchen so at least we know they can hear and respond to us if we need them.  I also cleaned up the kitchen, picked up the living room, and started the laundry. Ren is sleeping on the couch and doesn't seem to be speaking to me. I suppose that's ONE way to deal with a day like this.

Maybe I'll have another beer.

Tuesday, July 24, 2018

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 (link and link) 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 (link). 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.

Monday, July 23, 2018

On the Road

When I decided to call this blog post "On the Road," I figured I should quote Jack Kerouac out of context. These are the quotes that struck me as most appropriate for the tales I wanted to tell and perhaps the perfect distillation of what it means to be an autism mom.

"It all ends in tears anyway."
"I had nothing to offer anybody but my confusion."
"We agreed to love each other madly."


Every summer, I am invited to return to my alma mater and give a series of lectures. The audience is an eager one, the pay is good, and it's a great chance to see family and old friends. So, every summer we load up the family and make the 6-hour drive from our house to the university. The kids love making the trip, and there are generally no surprises or new things they need to anticipate. We stay in the same hotel and do essentially the same things. We see my parents. And Big Sissy.

Obsessed with his bowling ball.
I suppose the sheer regular-ness of the excursion lulled me into a sense of complacency because I did not anticipate that Stow would lose his shit in the ways he did on this trip. It started with battles over how much he should or shouldn't tilt his chair. Then, it turned into him refusing to keep his seatbelt on. Next, he was hitting his brother and sister and then me. Then kicking the back of the seat as hard as he could to express his discontent. By the time we got to our destination, he was threatening to jump out of the car and Ren, and I were completely spent. For the next four days, Stow proceeded to behave in ways we hadn't seen for months. He was impulsive, unpredictable, and risk seeking. He relentlessly picked on his brother and sister and reacted with aggression toward us. One night at a restaurant, he said, "I want to go back to the ho-towel!" loud and repeatedly for the entirety of the final twenty minutes it took the rest of us to finish our food. In the interim, he tried to run out of the restaurant three times.

Some of you might ask whether we did X or Y or whatever to support or distract him. I can assure you that we probably did. We have, in fact, tried to do everything to help Stow. What we haven't figure out how to do, and in fact, maybe can't do, is to help Stow figure out how to process his anxiety. Change is HARD for him. Social stories, sticking to routines, bringing along familiar lovies and toys--none of these things are doing the trick any more. But, on the bright side, I guess this last short and (supposedly) simple trip showed us that it's time to go back to the drawing board.

When we pull into the garage after a day or a month away, Stow always heaves a little sigh of relief. He is just so very happy to be home with his toys and his bed and his driveway and his yard. Hopefully, eventually, we will figure out how to make being away less stressful for him. Until then, I think we might just stick close to home.

Cucumber harvest after 4 days away.
That's probably better for the cucumbers anyway!


A week or so after we got back from our road trip, Sky and I spent the night in downtown Chicago. I made the last-minute decision to book a hotel room on that particular weekend after I realized one of my friends was playing in a local music festival that also headlined one of my favorite bands. Somehow I figured I could convince Sky to come watch live music as part of his special weekend away with me. (I was wrong, it turns out).

The day before our departure, we went to the Humane Society and got a new kitten because clearly, any changes in routine should definitely be accompanied by the introduction of a new family member (and clearly, I have not learned enough about how to parent kids on the autism spectrum). Sky worried that he would miss the most important moments in Taro's young life, so it took longer than expected to get away (and required me to calculate the approximate number of hours and days Taro would be in our lives based on average cat life expectancy in order to convince him to go at all). By the time we got on the train headed to downtown, it was already after noon.

On the way to our hotel.
Our hotel, it turns out, was about a block from the Japanese Consulate in an area we know well. Sky was most thrilled by the tall buildings. Then I took him to have some Ghirardelli chocolate and to the LEGO store, and he lost his mind. After wandering for a couple of hours, Sky insisted on going back to the hotel room so he could build the LEGO set he'd bought. Turns out cable television and early 2000s comedies are also mind-blowing because we spent the next two hours in the hotel room while he built his LEGO set and watched Paul Blart: Mall Cop. Despite my best efforts, I could not convince him to come with me to the music festival, and given that I'd let Pink do her thing on the farm, I knew I owed it to Sky to let this trip go at his pace.

Sometimes you just need to go look at LEGO.
Sky was gracious enough to agree to have dinner with a fellow ASD mom-blogger friend and her kids, and he even agreed to be patient while my friend and I quickly tried to catch up on the four years since we'd managed to have dinner last. I can't tell you how reassuring (and completely disconcerting) it is to hear someone describe the insanity in their own lives in practically identical terms to the way you describe your own. If you're reading this blog because you have a kid on the spectrum, reach out! Being able to talk to people who actually KNOW what this is like may just be the thing that keeps you sane.

Tall buildings as viewed from our hotel bathroom.
Sky had anxiety about walking back to the hotel after dinner and also about using a ride service, so my friend graciously agreed to drop us off at the hotel in her Uber. (God bless friends who accommodate random anxieties! I mean, really.) After another quick walk among the tall, familiar buildings, he settled in for a Harry Potter marathon. I fell asleep AND woke up to the sound of a Harry Potter movie. After breakfast, I'd hoped to get Sky to a museum, but when I asked him what he wanted to do, he said he wanted to do the exact same things we'd done the day before.

So, we did.


"It all ends in tears anyway."
"I had nothing to offer anybody but my confusion."
"We agreed to love each other madly."

Tuesday, July 3, 2018

Down(,) on the Farm

Back in May, before I left all three kids home with Ren for 25 days, I promised each of them we’d do something special together once I got back. They jumped at the idea.
“I want to go to farmer’s market and eat Mexican ice, pet animals at the pet store, and then go read at Starbucks!” announced Pink.

“I want to stay up late with you and watch Star Wars,” said Sky.

“Let’s buy candy!” exclaimed Stow.
First of all, awwww.

And, second of all, geez, they have low expectations! When I told them I was thinking about doing something more substantial, they each just kept adding to the list of things we already do, somehow making me feel bad that we’ve worn them down to the point of expecting not much at all. 

In fact, we do take them to do some pretty great things, but it’s probably also true that they couldn’t fathom what I meant because I’d never been able to imagine going away alone with one of them before now. After all, until this year, taking one of them while Ren stayed home with the other two seemed impossible. Ren’s back has stabilized some, though, so I decided to try it. 

When they realized I would take each kid somewhere special for a night, Pink wanted to go to a farm, Sky wanted to go to Chicago, and Stow just wanted to go to a "ho-tower" (his word for hotel)--it didn't seem to matter where. To his credit, Ren agreed to this plan even though I hadn't consulted with him in advance. Thank goodness Ren's cool like that!

Last night marked step one in this new experiment; Pink and I stayed at a farm B and B. The B and B is a place I'd visited it as part of preliminary research for a student project, and since the farm has cows, sheep, goats, chickens, pigs, dogs, and cats, I immediately decided Pink P would love it there.

Helping look for eggs.
The two of us arrived at the farm just after lunch time. By dinner Pink had located and named all seven of the farm cats, found a bunch of chicken and duck eggs, fed the calves, and helped corral a particularly skittish sheep. For dinner, we managed to find a pizza place that had a gluten-free option. Sure her pepperoni pizza with no cheese cost $18, but apparently that's the cost of quality time away when your kid has food allergies! Over dinner, we laughed harder than I’ve laughed in long, long time as we talked about all the crazy things Stow has done lately, so I guess that pizza was worth it. 

Giant dogs soon became Pink's BFFs.
When we got back to the farm after dinner, there was a fire going in the fire pit, so we stayed up late roasting marshmallows and making new friends. 

S'more fire.
In the morning, after helping with chores and eating an allergy-friendly fresh farm breakfast, we headed back to "civilization." When it was time to go, Pink cried. She was going to miss the animals and the alone time with me.....but mostly the animals. We both were going to miss the reprieve from daily life with two brothers on the spectrum. 

Pink's anxieties about going home were well-founded; within five minutes of stepping into the house, Stow had a massive meltdown and pulled Pink’s hair hard enough to get a fistful of it. In fact, he's been out of sorts every since we left--it's funny (and really, really hard) how the slightest changes impact him so. The immediacy of Stow's meltdown served as a stark reminder of the limits to what I can do for my kids, but it also reinforced for me the importance of giving each kid time to decompress away from the fray.
Farm bedroom

Morning on the farm.
In general, I’ve come out on the other side of the severe depression. But, I’m still not sleeping all that well, and I'm still struggling to keep my head above water. While being at the farm with Pink made her tremendously happy, it also helped me see I still have work to do until I am back to where I was a couple of months ago. So, you know, one step at a time. In the meantime, I'll keep looking at these pictures of sunrise and sunset on the farm and listening to good music and getting up in the morning and facing the new day with as much resolve as I can muster. For now, I guess that'll have to be good enough.

Friday, June 29, 2018


The last time I really slept was more than a month ago. Most nights, like tonight, my brain spins with problems I need to but can't solve, and my body tells me I can't sleep until I fix at least SOMETHING. But, I don't even know which parts are broken much less how to fix them, so I wander--literally and figuratively. On the worst nights, I drive, hurtling further and further into the darkness in search of answers. Most nights, though, I spend wandering through the rooms of our house or into remote corners of the internet.

Wandering in late-night Kyoto.
In college, when my depression was undiagnosed and unmanaged, I avoided real sleep and chose instead to  string together a series of 20-minute naps over the course of any given night. When I did try to sleep longer than that, I found it easier to relax on the floors of friends' dorm rooms far from all the things that were worrying me. After I moved to Japan in my twenties, I had a standing invitation to use the hammock my fellow teacher had strung across her living room. She lived 10 miles away along windy mountain roads, but I still found myself there often. I can't think of a more generous act than letting someone sleep with you like that.

These days, it's a little harder to accommodate my wandering sleep habits. In fact, these days, a lot of of the self-preservation techniques I developed the LAST time I struggled with depression 25 years ago feel completely out of reach. Special needs co-parenting with a disabled spouse has shown me that ignoring my needs is the best way to get through most days, even it is a terrible idea.

Despite the reappearance of my symptoms, everyone else's needs haven't suddenly and miraculously disappeared. Ren still loses hours and days to pain and depression. Stow still melts down and engages in risky behavior. Sky still goes into anxiety spirals and wreaks havoc with his lack of empathy. The kids still need to get places and do things. Dinner still needs to be served. Clothes need to be washed and bodies bathed. And, of course, someone needs to make some money to keep the whole thing running. Who has time to be depressed? I mean, really!

Ironically, this experience will probably turn out to be the best thing that ever happened to me. Constantly running myself ragged and ignoring my own health is a terrible way to parent. I've known this for awhile but didn't see a compelling reason to change. Funny*** how depression has a way of forcing me to.

***By "funny," I probably mean "this is totally irritating and completely annoying," but since I haven't had much sleep, it's really hard to know.

Also, if you haven't read it, I recommend the short story "Sleep" by Murakami Haruki. It's in a collection called The Elephant Vanishes. "The Second Bakery Attack" and "The Elephant Vanishes" in the same collection are also pretty great.

Wednesday, June 27, 2018

Life Goes On, Really

Today I laughed, I mean really laughed, for the first time in a long, long time. Sure, it was inappropriate and in reaction to Stow's misuse of the word "attitude," and, sure, my laughter led him to throw pillows and then punches at me, but eventually, he was laughing, too.

Stow re-enacts his heroic efforts to "survive" the flash flood that happened on campus today when the storm drains clogged and our car was surrounded by rushing water a few inches deep. The tall fry is me, and the ketchup is the water.
Also today, the boys got haircuts, and the girl had fun at horse camp. Something that felt like progress happened at the kids' therapy session, and the teenager actually smiled.

Plus, no one cried.

Produce from our vegetable garden.
Life does indeed go on.

(Pssst. Click on the last sentence to read the previous post if you haven't read it already. Or go back to the the first post in this series about mental health  and read from there..)

Tuesday, June 26, 2018

Life Goes On

Bedtime tonight looked a lot like the apocalypse as three children fought over who was in charge of picking up the Lego, who was in charge of picking up the train tracks, and who was in charge of picking up Ultraman guys. Stow exercised the typical little brother tactic of walking off the job. Sky, whose voice is now at least an octave lower than it was six months ago, employed his man voice having discovered that yelling at people has a much greater impact than it did when he sounded like a child. Pink, who has learned to ignore the yelling, taunted the yeller, a strategic move that never ends well for her. Listening to it unfold from upstairs, I imagined limbs entangled in a dust ball of a fight like in the old Loony Tunes cartoons.

Ultraman guys as visual representation of the number of times I've traveled to Japan for work over the past however many years.

At one point, Stow came up, angry that I persisted in requiring these things be picked up (a request that was at least four hours old by that point) and threatened to break the lamp (our lamps take it on the chin, you guys) before coming at me with a phone handset. Fortunately, he's just barely this side of holding it together, so instead of getting clocked in the head with the phone, I got hugged aggressively (for the seventh or eighth time today), before he pulled it together enough to go back down to help. Not long after, Sky and Pink stomped their way upstairs to bed.

Ren had already retreated before the bedtime smackdown unfolded.  I know he heard it, but he didn't intervene. His leg pain is back, and after ten days of dealing with my depression (and 25 days before that parenting the kids alone), he'd hit his wall. I wasn't surprised or even disappointed by this; he made it longer than I expected he would. Both of us are married to someone who suffers depression--mine lifelong, his situational, the product of severe and chronic pain and of being so far from home and parenting kids on the spectrum--so I suppose the bright side is that we understand what the other is experiencing even if we don't have the resources to help.


When you come out the other side after a serious bout of depression, it feels a bit like you've re-entered the Earth's atmosphere in a spaceship that has a cracked heat shield. You can't believe you made it back, and, also, you feel pretty fried.

In that fuzzy state when you've transitioned from the sheer terror of ideations and a brain on the fritz to the more familiar general malaise of life with chronic depression, it's hard to figure out how how to piece things together again. The easiest way, of course, is to just go back to whatever it is you were doing before the crisis--you know, to pretend you didn't just go through days or weeks of hell. To keep going to therapy and taking the medication.To focus on work and the kids. To go out with friends. To distract yourself with television or mindless games. To exercise more. Only, it feels a little harder to do these things because you are less and less sure that anything really helps.

Plus, you don't come out the other side into a vacuum. You come straight back into real life after having lost days, weeks, or even months to the darkness that sought to overtake you. There's no trophy for outrunning it again, no celebration that somehow you made it through. Instead, you dust yourself off and keep running, slower, winded and limping, but moving forward. Life goes on because it has to, and you figure out how to go on with it because, really, that's your only choice.

Tuesday, June 19, 2018

Moe's List of Things You Can Take Away from Her (Gross) Oversharing

When I was deep in it while far from home a couple of weeks ago, the only person I told was a friend thousands of miles away. "You need to tell [the person your traveling with]," she said. "If your leg was broken, he'd want to help. This is no different."

Though I really didn't want to, I took her advice because I knew I needed to let someone closer know. But, I'm not sure I agreed with her assessment; I think the way our society thinks about mental illness IS different. Despite how much our medical system has evolved over the last 100 years, mental health issues are still treated as somehow less acceptable than all the other ways in which a body can let a person down.

I experienced my first severe depression when I was 18, an event triggered by a career-ending tennis injury and subsequent surgery. I went off to college that year hardly able to walk, and although my knee eventually recovered, I spent the next four years battling a depression I didn't want to admit I had. Depression gives you a certain empathy, and in my case, it led me to be actively involved with the student counseling center on campus. At the end of my senior year, the head therapist, who had become a good friend by that point, said to me, "Moe, You've done everything in your power to deal with this. Sometimes, though, it's just out of your control. Sometimes it really is just a matter of chemistry."

I had done everything--hours of therapy, prayer, meditation, exercise, lifestyle changes--but I had refused to consider medication. To me, taking an antidepressant was akin to failure because I didn't really grasp what my friend was reminding me of a couple of weeks ago. Depression is not a personal failure; it's the body's way of responding poorly to a host of internal and external factors. And, along with a whole bunch of other mental illnesses, we need to talk about it.

Depression and anxiety don't define me any more than my nearsightedness or my flat-footedness. Though I can't imagine a conversation in which I describe in great detail my use of orthotics, I suspect most people would be more comfortable with that conversation than with one about the ways in which my brain has been messing with me the past few weeks. That's why I've been writing these posts. Mental health struggles shouldn't be a secret. We need to be able to think about depression and anxiety and all the other mental health issues in the same way we think about a broken leg or an astigmatism.

I will be okay. I've been through this before. And, if/when I ever feel that I will not be okay, I have assembled a safety net of people I've promised to let know. But, I am sure there are people all around us who are still fighting this fight largely alone--afraid or unable to get the support they need. Chances are, they are people like me--highly successful and driven and with a sense of humor perfect for masking what's going on. Being vulnerable is hard. Being vulnerable regarding your mental health feels impossible.

If you've been reading my blog for awhile, you know I'm a fan of lists. So, here's a list for you:

  1. We need each other. And, we need to be okay being vulnerable.
  2. It's okay to ask for and receive help. One day you will be able to return the favor.
  3. Having mental health issues doesn't make you weak. In fact, you're probably the strongest person you know.
  4. Every day that you keep going in the midst of your mental health struggle is a tremendous victory. Try to celebrate it and know that one day it won't be so hard any more.
  5. Sometimes your family can't help. Mental health issues are hardest on the ones you love the most, so it's okay to look for support outside your immediate family.
  6. Sometimes the best way you can help a struggling friend is to keep talking to them. Don't pity them or patronize them. They don't want to worry you but probably really, really need someone to be present with them and treating them the same way they've always been treated.
  7. Total "recovery" from mental health issues is probably not a realistic goal. Think about ways to embrace and accept this part of yourself.
  8. Learning to live with things like depression can actually help you tap areas of strength you didn't know you had. For me, it's writing. I often write better when I am depressed, and at the very least, depression motivates me to put to words things I wouldn't normally talk about.
  9. It's up to all of us to remove the stigma around mental illness. We must teach our young people to do this differently.
  10. If not us, then who will take these hushed whispers and turn them into a collective roar for change?

Monday, June 18, 2018

Day Three

Pink wants to know if today is the day that I won't sleep on the couch for hours at a time. She asks how long it usually takes for jet lag to wear off. I explain to her about depression, so then she starts telling me the best jokes she knows.

Stow wants my attention. He comes to me frantic about his train, his tummy, his sister, his window. He hits me in frustration when my responses are slow and sloppy. I turn him away when he asks me to go downstairs and play with him. I can't possibly muster the energy it would take to play.

My chest feels like someone has filled it with quick drying concrete that hardens as it seeps into my stomach and down to my legs. The simplest tasks feel insurmountable. I'm able to make it through the grocery store but can't face putting gas in the car or picking up a prescription. The kids have a swim lesson that I'm not sure I will make it through.

This pizza felt like a herculean achievement.
Ren's patience wears thin. Under his breath, but loud enough for me to hear, he says, "She's back, but I am still doing everything myself." Supine on the couch, I don't disagree. Sleep beckons me in the middle of the day. At night I lie awake hour after hour as it eludes me replaced by anxiety dreams and a buzzing in my brain that can't be shut off.

This is not my A game, or my B game, or even my C game. This isn't really even coping. In my head, I know that it will get better (it always does), but I also know that it could take awhile. I don't have awhile; being a mom in a special needs family means I'm operating on borrowed time already. Still, my only choice is to put one foot in front of the other, to wake up each morning and to try again, to hope that tomorrow will be a little easier than today, and to pray that somehow everyone else can keep it together just enough to avoid complete catastrophe.

Sunday, June 17, 2018

A Game: An Anxiety-fueled Post at 3 AM

The other part of it, of course, is the anxiety. My anxiety is as old as my memory. When I was six, I insisted I go to bed at 6:45 pm EVERY. SINGLE. DAY. for I was convinced I'd never be able to sleep if I didn't. Bless my parents, they accommodated this demand and then spent many nights sitting up with me as I cried well past midnight. By fifth grade, my anxiety had expanded and taken over; I cried every single day for the first six weeks of school filled with worry about things I didn't have words for. It's hard to make friends and be liked when you're constantly crying for no reason, so eventually I learned how to internalize those feelings and instead would start awake each morning gripped with a sense of terror that ripped me from my dreams and set my stomach on edge. That's when I stopped eating breakfast.

By seventh grade, I decided the only way to deal with anxiety was to take complete control of any and everything I could. Sure, that led me to develop an eating disorder, but I was also a straight A student, star athlete, and successful musician. That summer I shot 100 free throws, served 100 tennis balls, and rode my bike 10-15 miles every day. It turns out perfectionism is a pretty effective way to deal with anxiety; it drives you to be the very best at everything, even if doing so isn't well-advised or necessary. The downside of course is that when you're striving to be perfect, you miss a heck of a lot along the way.

Eventually, I internalized my coping strategies so deeply, that it wasn't until recently that I understood how much my anxiety still controls my life. Parenting has a way of highlighting these kinds of things for you, especially when your children start to exhibit some of the same behaviors you remember struggling with as a kid.

Texts from Sky; he outgrew size 12 but hasn't grown into size 14....
During the three plus weeks that I was in Japan for work, Sky frantically texted me almost every day. The nature of the texts were largely the same--they either highlighted for me whatever was going horribly wrong at home or repeatedly asked me to walk him through something that was happening or about to happen. Autism and anxiety go hand in hand, and Sky's anxiety is absolutely brutal. From thousands of miles away and with my own anxiety percolating just below the tipping point, I eventually had to stop answering his texts and hope that somehow Ren was on top of it.

These are just the moms I managed to fit into the screen shot.

Calling home didn't go much better. The first Skype call ended in a wrestling match. During the second, a lamp got broken. I stopped calling after that. For kids on the spectrum, change is hard. Reminding them of that change by calling leads to chaos, so as awful as it seems (and is), it's actually better for me just to disappear when I am gone.  Fewer interactions meant slightly less anxiety for all of us.

Even as I felt things falling apart for me on the depression front while I was away, I also knew that my family wasn't the place where I could find solace or respite. We love one another fiercely, but mental health issues are hard on everyone. Special needs parenting requires your A game, and if you can't bring it, you don't get the option of sitting this one out. Your best (and only) hope is that the other parent can be on their A game while you try to hobble alongside offering support where you can.

In the first 24 hours I was home, Stow broke a door, attacked his sister over a couple of Hotwheels cars (causing her to have a pretty scary asthma incident), wept uncontrollably multiple times at the thought that I don't love him, and ran away twice. When I tried to introduce the kids to a new board game, Sky got so anxious that he gave himself a nosebleed bad enough to convince me that he was patient zero for a new Ebola outbreak. It took two of us to help him get it under control and to keep him from passing out in the middle of the kitchen. I spent the rest of the afternoon in bed with headphones on and a towel over my eyes. At dinner, which didn't happen until 9 p.m., Stow spilled a plate of curry, eliciting an unwanted critique of plate carrying methods from his brother who didn't, of course, extend his helpfulness to assisting us with the clean-up.

Stow's "Welcome Home" note for me: "Please don't leave me like that. (heart heart). How much I love you __________ Moons."
Mercifully, despite the fact he single parented for 25 days (the longest stretch, yet), Ren senses where things are for me and has managed to stay on his A game so far. I know the limits of his reserves, though, so I'm hoping to turn things around quickly and take on some of this load.

First, though, I really need to figure out how to get some sleep.

Saturday, June 16, 2018

Safety Net

Not long ago, I got back from trip to Japan where I participated in some exciting and hopefully life-changing work, but I also had a pretty significant mental health regression while I was there. Normally, I don't write much about the mental health aspects of my/our lives, but given the high profile suicides that happened while I was in Japan and given a recent post by one of my fellow autism mom bloggers describing her very recent suicide attempt, I think it's important to add my voice to this conversation that so desperately needs to go from hushed whispers to an unrestrained collective roar.

Shallow river
Depression is terrifying. One minute you can be doing just fine and the next you're totally overtaken by the grim calculations of suicidal ideations--if I jumped from this bridge, would I die or would I just break my legs or back? If I land just right, would I hit my head and drown? Is that door frame high enough, and how would I need to tie the sash to make sure it holds and my feet don't touch the floor? At which spot on the train platform is the train moving fastest, and if I jumped, would I be able to do so without anyone stopping me? .......

Eight stories
Eight stories should be high enough, but can I get over this wall and scale the safety fence fast enough to avoid being caught? If I step in front of this truck, could the driver brake in time? How can I be sure he doesn't swerve and hit something/someone else? These thoughts come at you regardless of where you are, what you're doing, or what you should be doing.

Some days, you spend a lot of energy just making sure your feet stay firmly rooted to the ground. Waiting at a crosswalk with friends, you find yourself stepping behind them--in a move subtle enough that they probably don't notice--because you know you need that extra barrier between you and your demise. You exhaust yourself as you try to shut out those thoughts and you recalculate your routes so you aren't crossing any bridges or using stations without security gates between you and the track. Some days, you hand over the obi to your pajamas and your car keys to an unsuspecting friend/colleague/spouse and hope he/she doesn't question why. Those days you know it's just a matter of making it until morning because you know that when the sun rises again, you will have bettered the depression, at least for one more day.

Sometimes depression finds you sitting on the floor of the train station at midnight, too overwhelmed to go home, too overwhelmed not to go home. You'll discover you're crying only when a nice young man and his girlfriend come to ask in anxious and broken English, "Are you okay? Need help?" And, you will lie and say you're waiting for a friend, which turns out not to be a lie entirely because you do need a friend to save you but you don't know how to ask for that or how anyone could ever possibly save you from the noise in your head. After the guard kicks you out of the station and you find yourself sitting next to a drunk homeless man, you might find the strength to text someone, and if you're lucky, they will come sit with you or they will stay on their phone, talking/texting you through making your way back to the hotel. Sometimes, they may even let you sleep on their floor so you don't have to spend a long night alone with the buzzing in your brain.

Depression tells you that there is no way you can go on like this. And you know this is true, but you you're not sure what to do about it. On the days when the depression isn't as crushing, you let some people know what's going on. And, somehow, those people work out ways to help; they share Spotify playlists, and YouTube videos, and FB memes. They invite you to do something fun months in advance to give you something to look forward to. They tell you how amazing they think you are and remind you of all the good you do in the world. None of these things is actually enough, but you tell yourself the glass is half full, and you hold on tight to them. You try to string together the little joys (when you can find them) into a chimera of hope, fragile and unsustainable. You see your therapist. You adjust your meds, and you pray like hell for it to get better.

The more you do all of these things, the more you come to understand that, for better or worse, depression is just part of who you are. You cannot separate yourself from it, and no one can take it from you. You realize that the life you lead will not be the one you hoped for, but you will discover that if you give people who care for you a chance, they will show you tremendous grace in the midst of your worst moments.

All I can tell you is the same thing I tell myself--hang on. I know the herculean effort it takes to make it through any given day. On those days that you can, reach out to others and start to string together a safety net. The work you are doing is hard, but it is so very, very important that you keep doing it.

National Suicide Prevention Lifeline: 1-800-273-8255

Sunday, April 22, 2018

Searching for Manna, Part 4

Part 1

Ruth zipped her coat, pulled up her hood and stepped back into the cold. She walked to the edge of the woods and yelled twice. There was no answer. For all of the light outside the Fletcher house, the woods were surprisingly dark. She needed a flashlight.

"Do you have a flashlight in here anywhere?" Ruth asked her mom as she opened the car door. Her mom looked up from the piece of yarn she had unravelled from her glove.


Ruth looked at the Fletcher's "Greatest Christmas Spectacle Ever." The light was still on in the dining room. She crossed the road and walked along the edge of the yard around to the side of the house. Instead of theme bushes, it was surrounded by words spelled in white lights. To the left of the one that said "Feliz Navidad" there was a sidewalk that was gradually vanishing under new snow. Ruth stepped over the red ribbon. The music grew louder as she got closer to the house and then faded once she was behind the speakers. For a moment, she wanted to slip behind one of the giant firs and pretend she was 007.

The bell surprised her. She expected it to play a tune like "Jingle Bells" or "We Wish You a Merry Christmas." It didn't. No one answered, so she rang it again. A middle-aged man, in at­shirt and worn brown corduroys and no shoes or socks came to the door. She could tell from the pictures that it was Mr. Fletcher. He had a beer in his hand and was smoking a cigar.


"I 'm so sorry to bother you this late on Christmas. We've lost someone. Do you have a flashlight?"

Ruth expected concern or sympathy or at least curiosity. Instead, he said, "Just a minute," and left her standing in the entryway. In the room straight ahead and a little to the left, Ruth saw that he was in the middle of a game of poker. Two men and a woman sat at the table. The woman was chewing on a piece of pizza, holding it in her left hand, mulling over the cards in her right hand. Looking beyond the people at the poker table, Ruth saw a grey-haired woman sleeping on the couch.

Mr. Fletcher came back with a MagLite, a flare and some matches. He handed her the flashlight first.

"I don't know if the batteries are any good," he said. "If not, try this." He handed her the flare. "Just leave them in the mail box when you're done."

He smiled. It was a genuine smile. Ruth turned to go. The people at the poker table wished her a Merry Christmas. She walked back through the yard and past the car. Her mom got out.

"You coming with me?"

Ruth's mom didn't answer. She followed her to the woods. Ruth turned on the MagLite. The light was dim but usable. Besides her sixth grade camp-out, she could not remember ever being in the woods at night.

The beam from the flashlight bounced off the trees, sections of it disappearing completely into the darkness of the woods. The trees went much deeper than they appeared to from the road. The two women waded in. They walked slowly and carefully, each step sounding vaguely like two styrofoam coolers rubbing together. Ruth swept the woods with the narrow beam of light. From within the trees, the Fletcher's was no brighter than a few lighters held up by enthusiastic fans before a rock concert.

They went into the woods a few feet and then moved laterally. "Dad," she called into the trees. It occurred to Ruth that he would be a lot easier to find in day light. She supposed they couldn't wait that long. She yelled again. Something moved a few feet further in. They stopped and then moved cautiously forward. Ruth's dad was burrowed in the snow under a fir tree twenty feet into the woods. His lips were still pink. Ruth knew he hadn't been there too long. He reminded her of the baby Jesus sleeping in the manger. A baby some said would change the world. A baby sleeping under the stars, resting on his mother's breast not yet aware of what it is to hurt, to fear, to distrust--one who didn't realize that at any moment his mother's arms could spread open and take flight, allowing him to go tumbling to the ground.

The End

Friday, April 20, 2018

Searching For Manna, Part 3

Part 1

Ruth crossed the street toward the house. It was "The Greatest Christmas Spectacle Ever," a place owned and run by Bob Fletcher. He and his wife had been accumulating Christmas decorations for years. The lights on the house blinked intermittently. Across the sky, above their heads, a plastic Santa in a plastic sleigh pulled by plastic reindeer moved back and forth on a cable strung from the roof of the house to a utility pole across the street. When it moved forward, the light was on, giving Santa a jolly-red glow. When it reached the utility pole and began to move backward to the roof, the light went off.

Ruth stopped with her shins touching the rope of red bows tied to candy canes that kept people from walking across the Fletcher's yard. Maybe they didn't want footprints mucking up the snow. The yard was divided into sections and cluttered with plastic statues and mechanical dolls. There was a fake pond with fake skaters who spun and moved in figure eights and sang "Winter Wonderland." There were polar bears, and four different manger scenes, one of which had three wise men that actually walked and pointed at the Star of Bethlehem overhead. Each of the trees and bushes had a different theme. One was wrapped in white lights with yellow bows and had a sign hanging from it which read, pray for Peace." Another was covered with big primary colored light bulbs and had all of the Disney characters hanging from it. Mickey was Santa, and Goofy was an elf.

Ruth thought it must cost hundreds of dollars in electricity alone to make this place run. She wondered if the light made it hard for them to sleep. Maybe they had black shades to pull over the windows and keep the light out. Ruth looked at one of the windows. Instead of seeing black shades, she saw directly into their dining room. It was gold colored. They must have just finished dessert, she thought. It occurred to her that the music must be bothersome too.

She thought about the endless tangles in the hundreds of feet of cord that powered this spectacle, imagining trying to find the one burnt bulb that kept the peace tree from lighting and cut the electricity off from two of the manger scenes. Ruth wondered what the yard looked like when the sun was out and there wasn't any snow. She could picture the orange heavy-duty extension cords that bound the trees and wove through the grass like poisonous snakes. Perhaps the whole thing became a giant electrical field when it rained or snowed. That's the real reason for the red­ ribbon, Ruth thought.

Next to the parking lot, across the road from the Fletcher house was what looked like a little shrine. Ruth walked to it. There were hundreds of pictures taped to it, pictures of people-­singles, couples, families--all of them standing with their arms across Mr. Fletcher's shoulder. Ruth had left her camera at home. It just as well, she thought, it's late. She tried to imagine their picture on the wall--Ruth and her mom with their arms around Mr. Fletcher's shoulder, and her dad standing behind, all of them grinning like the people in the other pictures.

On the ledge inside the stand, there was a painted coffee can with a sign that read, "Please donate to make the Fletcher's display an annual tradition." Ruth wondered how many coffee cans full of money it took to cover the electrical bill. Next to the can was a register for all of the guests who had visited "The Greatest Christmas spectacle Ever." There were names from as near as Letts and Madison and as far as Ohio, Illinois, and even California and Maine. It occurred to Ruth that this place was a beacon that drew people out of the dark, if only for a moment.

She turned back toward the car. Her mom was standing next to it smoking a cigarette. She didn't see her dad.

"What do you think?" Ruth's mom asked.

"It's something."

"It sure is." Her mom looked up toward the giant star which flashed over the house and exhaled a stream of smoke which concealed itself in the whiteness of her breath.

Ruth and her mother didn't make eye contact. They both wondered how long he would take. They'd been there for nearly thirty minutes. The wind began to bite them through the layers of clothing they were wearing. Ruth got into the car, turned the ignition, and flipped the heat to high. They sat in the front seat, waiting for it to warm up. Ruth began to consider the possibilities. He probably got lost on the way back from the port-a-let or forgot where they parked. Or maybe he slipped and hit his head and was bleeding to death somewhere in the woods. The idea intrigued her. Maybe he was dead. A part of her hoped that it was true. She wanted to leave. She was tired of waiting.

"Do you think he's coming back? It's been almost an hour."

"I don't know."

Ruth couldn't tell if her mom was scared, sad, or relieved. "I guess I should go look for him, huh?"

"I'll go with you." Ruth's mom said pulling her white glove back onto her hands and buttoning the one button on her dress coat.

"No, you're not dressed for it."

Wednesday, April 18, 2018

Searching for Manna, Part 2

Searching for Manna, Part 1 is here.

The snow rushed before them, through the headlights, at the windshield and on over the top of the car. Ruth gasped like she was taking her final breath before trying to swim the length of the pool without coming up for air. Her mom turned up the heater. Warmth burst from the vent. The windshield clouded and then cleared. She pushed her way back into the upholstery. They drove for five more minutes and then ten, making their way deeper and deeper in to a darkness they didn't want to be in but couldn't turn away from.

They drove through Napolean. The buildings were dark, and the streetlights reflected dimly off of the crumbling buildings and the cheap Christmas decorations--red and white candy canes, green Christmas trees, gold stars of David, all of which whipped in the wind looking a lot like giant pipe cleaners. The sign in front of The First Bank of Napolean displayed the vital information 27°, 10:52 pm.

Ruth's dad began to snore in the back seat. It occurred to her that he should have been driving. He knew these roads better than anyone. They were the roads of his youth, of winding rides on rickety school buses to every one stop sign town in southern Indiana. These were the roads where he had learned first to drive and then to fly. She hadn't been this way since she was a girl.

Three miles outside of Napolean, they encountered their first oncoming car. It seemed like a good sign. It can't be too much further, now she thought.

Her mother asked meaningless questions. So, what were Jeff's plans for Christmas? Do you still have that green blazer we bought on sale last fall? How come you never wear it? They were the same questions she always asked. Sylvie couldn't let her focus be drawn from the road.

Another set of headlights appeared faintly in the distance. Ruth could tell that the oncoming vehicle was moving fast. She braced herself. For a moment, she could no longer see the lines on the road. The truck barreled past, and she felt the passenger-side tires rumble on the edge of the pavement. She imagined their car springing from the road, climbing and somersaulting into the crisp black sky, eventually landing softly, upside down in the snow-layered fields. There would be no pain or discomfort, only rest, absence of motion. The car slid back across the center line and toward the driver side ditch. She regained control without using the brake.

They drove on in silence. Above the trees, in the distance, the two women began to sense a pulsating light.

“That must be it,” Ruth said.

Soon, they were part of the dome of light which flickered and flashed against the falling snow. Ruth felt herself becoming part of it. She could picture it--the little 4 door sedan sliding along this road where the cornfields start to give way to the glacial hills of the terminal moraine--as if they were preserved by the dome of light like in one of those paperweights with falling snow that settles and can be shaken again, at once peaceful and chaotic.

When they got there they found a makeshift parking lot on the side of the road opposite the house. There was just enough shoulder for two or three cars to pull off of the road at one time. She eased the car into the first available space. The odometer read thirty-two miles.

Her father woke up, climbed out of the back seat, and walked into the woods without saying a word. She was used to this. There were many nights while she was growing up that he didn't come home at all. Her mother would make excuses. Your father had to work late out of town, so he's staying in a hotel, she would say, or the roads are slick, we both thought it was better if he didn't come home until morning. It took Ruth a long time to see through the lies.

"Too much beer?" said Ruth, getting out of the car.

"I don't know," her mom replied, never facing her, walking toward the house.

As long as she could remember, Ruth's mom never betrayed him.

Part three is here.

Monday, April 16, 2018

Searching for Manna, Part 1

I used to write fiction. In fact, I started this blog way back when as a way to keep writing in hopes that I might one day write fiction again. This story is one I wrote long, long ago. It was published in a student magazine when I was an undergrad but otherwise hasn't seen the light of day. This is part 1 of what I think will be four parts. Let me know what you think!

Searching for Manna

     On Christmas night, on the way home from Aunt Martha's, they decided to go. It was then that they realized how much they needed to see it. They were afraid if they waited one more day, they would miss the chance altogether. Ruth was driving. The car heater put out enough warm air to make her think she was wrapped in a cocoon--wrapped together with her parents, two dirty casserole dishes which sat at her mother's feet as patriotic survivors of one more baked ham and twice-baked potato meal, and a huge round tin with caramel, cheese, and sour cream and onion flavored popcorn, Grandpa's annual expression of love and good will. Outside, it was snowing. It had been for several days.
     Ruth navigated the pathways of slushed roads, lined with grey snow and headed south through town toward the countryside. She could feel their car being pulled from the stark incandescent streetlights into the gentle glow of the stars and moon that rolled with the hills for miles.
     Tiny towns appeared as dots along Highway 42. Ruth tightly gripped the steering wheel and pulled herself closer to it. Whenever she moved the wheel, it lightly brushed her breasts. The wind cut across the long-since plowed frozen fields, picking up bitter speed with each invisible row of corn that it passed over. The dark parallel lines on the roads shifted and changed without design as the snow blew relentlessly across them. She aimed for the middle, crossing the double yellow line and then back over again, focused on keeping the car out of the ditch on either side. There were no other cars on the road.
     Ruth's dad was the first to speak. "This is ridiculous," he said, when they were already several miles out of town. "You're going to get us killed."
     Even in the front seat, she could feel the warm bourbon on his breath. "Shut up, Dad," she said glancing over her shoulder. "We asked you what you thought ten minutes ago, and you didn't say anything."
     The sight of him leaning in the corner of the back seat, turned to his side, with his head resting on his hand, reminded her of the time several years before when he broke his rib at the hotel the last day of their vacation. At first, he had refused to go to the hospital and instead, resigned himself to lying in agony in the back of their woody Oldsmobile wagon. Her father, as they learned later at a hospital in the heart of southern Georgia, had no internal bleeding but a broken twelfth rib, the tip of which hung on to the rest of his rib cage like a loose hinge and threatened to break off at any moment and start a careless journey through the rest of his abdominal region. The injury resulted from a late-night fall either in the bathroom or on the patio. He couldn't remember which.
   That was the summer when she was eight, and it was the only time she remembered the family seating arrangement being altered. It always went by age. Dad drove. Mom co-piloted. The older two siblings were in the middle seat, and Ruth and Fran were in back, lying amid the suitcases, coolers, and discarded magazines. Ruth was the youngest, so she always sat in the back.
   This time, their father was back there, and she felt sorry for him. The suitcases could be isolating. She turned in her seat and sat facing him on her knees, reading parts of Ramona the Pest, and, when she saw tears in his eyes, offering him her stuffed goat. No one else in the car spoke. When he couldn't take the pain any longer, they stopped at the tiny hospital in Georgia. In that cramped and humid waiting room, sitting between her two older sisters, Ruth learned about drunkenness, and, she learned about her father. It was the first and last time that she heard anyone make a link between the two.

To be continued....

Also, when I post two days in a row, I know I run the risk of readers missing the earlier post, so here's a link to it. Check yesterday's post out if you haven't seen it already!

Sunday, April 15, 2018

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!

Thursday, February 15, 2018

How Not to Make a Kids' Movie

The new Peter Rabbit movie opened recently and has drawn a lot of criticism for its depiction of a group of rabbits attacking their nemesis with his known allergen. Using a slingshot, the rabbits shoot a blackberry into Tom McGregor's mouth causing him to have a severe allergic reaction and forcing him to his use his epipen. This is not actually the first time Sony Pictures has depicted severe food allergy reactions in kids' movies. Similarly harrowing scenes occur in Smurfs 2 and Cloudy with a Chance of Meatballs.

Just a week or so before, in response to a news story out of Pennsylvania in which three teenagers were charged with a crime after one of them spread pineapple juice on her hand and then tried to touch a severely allergic classmate, I pointed out that this kind of thing happens a lot more than people think and that I don't expect things to change until there is some kind of shift in the way we think about allergies. Severe food allergies continue to be used as a source of laughs. If it's funny to portray people who swell up and struggle to breathe after exposure to an allergen, is it also funny to depict a child getting knocked out of a wheelchair or dying from a disease? People argue that we should all just loosen up a bit, but really?

Allergy-friendly homemade pizzas!
Every time anaphylaxis becomes the butt of a joke or a twist in the story line, and every time it's depicted unrealistically, it becomes that much harder to overcome the various stigmas and misconceptions still associated with food allergies. And, as a result, the risk to our kids gets graver.

When Pink was in second grade, another kid on the bus shoved a peanut butter and jelly sandwich in her face. Several other peers have joked about doing the same thing. I get it; most kids have no idea of the kind of injury they can cause by exposing a kid with allergies to something they're severely allergic to, but can you imagine never knowing whether or not someone will threaten to try to kill you today?

Kids with food allergies are often described as weaklings or snowflakes. Their parents are accused of being overprotective and enabling. I can't help but think that at least part of the reason for these risky behaviors and negative attitudes toward kids with allergies is the fact that allergies continue to be a joke.

Another of the hundreds of lunches Ren and I have prepared over the years.
Children like Pink are fierce. They encounter serious risk on a daily basis and take it in stride. They learn earlier than most how to advocate for themselves (by reading labels and making sure they have their epipens handy, for example); they quickly figure out how to deal with being excluded or treated differently from their peers; and they become pretty adept at finding alternatives and workarounds. Plus, learning these tough lessons over and over again teaches them empathy and compassion that will serve them well for life.

So, how about this? What if we lived in a world that accommodated kids with allergies like we accommodate all other kinds of difference? What if schools spent as much time on allergy education and awareness as they do about other kinds of disabilities? Pink has had classmates tell her that they didn't invite her to their party because of her allergies. Others have admitted that they haven't had her over because their parents are worried about possible exposure. I find it hard to believe that she would experience these kinds of things if allergies were more widely accepted and understood.

As my bento post earlier this week illustrates, most parents and kids living with allergies work hard to live a normal life. We figure out how to prepare safe alternatives of our kids favorite foods. Though, we carry an epipen wherever we go, we also seek to make sure that our children live not in fear but in courage. Day after day, we do the work.

After much pressure, Sony Entertainment apologized (way too late) for the tasteless scene in Peter Rabbit, but wouldn't it be great it Sony and others who have larger platforms than our kids (who often fight this fight alone) followed our kids examples and showed a little empathy and compassion without having to be coerced into it?