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.