Wednesday, June 26, 2019

The Heart, It Races

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

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

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

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

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

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

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

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

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

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

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

Taro is not amused.



Wednesday, May 22, 2019

Forest Bathing

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

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

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

Me, Colorado circa 1992
One of my good friends from college spent the same summer at Ghost Ranch in New Mexico. In those pre-email days, I was a fervent letter writer, and she was one of my most reliable pen pals. I wrote about my anguish at knowing my time in those mountains was limited since, come August, I had to go back to the stifling humidity and relentless flatness of the Midwest. She wrote back, "Breathe deep the mountain air and save it for the rougher days."

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

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

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


*****


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

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

Sunset at camp.

I've started taking the kids with me when I walk or bike. It seems they could use some restoration, too. It thrills me to see them drawn to the trees and streams and rocks. They haven't lost their ability to let nature speak to them.
Near home.
We had already started planning a two-week road trip out West when we learned about the broken rods, so yesterday after we got home from the surgery consult, I had to tell the kids the trip was off. Their responses were quick and unfiltered; they were angry and sad and scared. They wanted to know why they have to spend so much of their lives waiting for their dad to have surgery or waiting for him to recover from surgery. They wanted to know if we would ever get to go to Florida or Colorado or Hawaii or any of the many places their friends visit in the summer. They worried about starting middle school and high school less than two weeks after the surgery. They know how much life turns upside down when Ren has surgery, and they were worried about what this seventh spine surgery would mean for all of us.


Whereas with previous surgeries, I could convince them (and myself) to look on the bright side, this time, I found myself at a loss for words. They're right. This is scary and unfair. None of us deserves this.
Near home.
Today, I decided we'd go to the mountains anyway. It will be a shorter trip, and we will have to fly instead of drive. I'm trying not to worry about the cost of it as we head into another avalanche of medical bills. Maybe forest bathing is what we need to get us through this time. I don't know, but it's certainly worth a try.



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

Tuesday, May 21, 2019

Nerf Karate Panda Party

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

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

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

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

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

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

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

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

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

“Yay!” He replied.

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


Nerf battle.

Helping lead the karate instruction.


Makeshift panda cupcakes.
Party favors--Panda sleeping masks.
And, it turned out to be a perfect little party. The kids had fun. It was low stress for me. Best of all, many of the boys said it was their favorite party ever. The only downside?

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

Sunday, May 19, 2019

A Thousand Tiny Cuts

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

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


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

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

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

Saturday, May 18, 2019

Facing Your Fears

Less than 24 hours after learning that Ren's rods are broken, I left for camp where I spent three days and two nights as a chaperone for Pink's fifth-grade trip. When Sky was in fifth grade, I went to the same camp to support him through all of the excitement (and transitions and potentially overstimulating surprises) of life in the woods, so I knew what to expect. Still, even before our visit to the spine doctor, my anxiety about going on the same trip with Pink slowly inched skyward.

Sunset at Camp
Then we had the appointment and got the news and I stumbled through the rest of that day and woke up the next morning having not packed or prepared for the trip in any way. In the 2 1/2 hours I had before it was time to go, I threw things into a bag, got Stow and Sky fed and out the door (which wasn't easy since when Stow realized Pink and I would be gone, he proceeded to have a pretty spectacular meltdown), wrote the last blog post (coping strategy!), and rushed out the door.

To say I wasn't in the right headspace to deal with a group of excited preteens is an understatement. It took a lot of energy to stay present with the kids and the other parents; I really just wanted to sit and stare at the wall. But, since I was one of four parents responsible for getting a group of sixteen kids through a bevy of activities spread throughout the sprawling campground, I didn't have much time to sit and stare into space. Heck, if it wasn't for the other three parents, I might not have even had time to use the restroom. 


I can only hope my attitude wasn't as bad as how I felt. I tried to take breaks from the chaos where I could, especially when I felt least able to be my best self with the kids. Of course, the kids pushed our patience pretty consistently, and by the end of the first day, I wasn't sure I'd make it through two more days. 

But, then something amazing started to happen. We started to see kids facing and overcoming various challenges and fears. The boy deathly afraid of snakes touched the back of a python. The girl who'd never slept away from home before made it through the night without calling home. The boy disgusted by leeches discovered he was fascinated by how they swim. The girl afraid of heights stepped out onto the beam thirty feet off the ground and the managed to walk across to the other side. 

Pink discovered her greatest challenge at one of the first activities our group did--the high ropes course. Along with her classmates, she got strapped into a climbing harness and put on a helmet, and (following thorough instructions) prepared to climb up onto the ropes. But, a few steps up the climbing pole, she froze. Despite all of her confidence, she couldn't will herself to climb all the way to the top, and by the end of the hour, after multiple tries, she only managed to make it two-thirds of the way.

Halfway up the High Ropes
Her inability to get up on the ropes made Pink worry that she wouldn't be able to manage the big event at camp, a zipline that starts from a tower five stories above the ground. The students hear from their teachers and siblings and older friends that the zipline is amazing and that they will regret it if they don't try it. After she struggled on the high ropes, Pink repeatedly asked me if I would climb the tower and/or zipline with her. I ziplined with Sky three years ago, so I knew the tower swayed in the wind and that the last step is up onto a small step that's probably not even a foot square. This is a kid who still sometimes asks me to hold her hand to calm her nerves on narrow, steep steps, so I wasn't sure she'd be able to do it. As we walked together to the top of the tower, she had tears in her eyes. But, she didn't stop. When it was her time to walk out onto the platform, she did it, and when the instructor shouted "3! 2! 1!" she glanced at me over her shoulder and then took off without hesitation. 

Pink, Flying
A boy in Pink's group named Ryan never made it to the high ropes. He never got to the top of the zipline tower. But, gosh, did he try. He went from adamantly insisting that he would never put on a harness and helmet to wearing them and taking a few giant steps up the high ropes climbing pole. And, even though he was too scared to walk up the zipline tower with his classmates, he didn't stop pushing himself. On my way down the steps to check on kids who had already "zipped," I found him clinging to the rail three flights up. Despite his intense fear, he'd gotten there on his own, going at his own pace. Twice he descended the steps only to convince himself to climb them again. By then every kid on his team was cheering him from the ground. Unfortunately, time ran out before Ryan could reach the top, but he never gave up.

Ryan facing his fears on his own terms.
I was proud of all the kids for the ways they faced their fears and tried new things, but most of all, I was proud of the way Ryan never stopped trying to do just a little better and to go just a little farther despite the fact he was absolutely terrified.

Even though we received soul-crushing, scary news this week, three days in the woods with a bunch of kids reminded me that life goes on and that all any of us can ever do is what Ryan did--steadily and determinedly put one foot in front of the other to face our fears head on.

Wednesday, May 15, 2019

Broken

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

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

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

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

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

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

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

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

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

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

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

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

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

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