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.

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.