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.