I awake, the tension in my back becomes noticeable immediately. I breathe in deeply, filling my belly with air like a vase filling with water. I let it out slowly and then do it again. The tension begins to ease.
We are entering the final phase before Ben’s final surgery and I am feeling it. I am feeling like I’m about to step off a dock into a lake, the dark glossy surface hiding the treacherous depths below. What is lurking there? I’m not sure.
This has happened before. It’s all happened before. I’m not pushing the feelings away. It is where I am, it is what it is. But feeling all this, the fear and anxiety, the knowing of what’s coming and the knowing that there will also be surprises and things I’ve forgotten to prepare myself for, things I couldn’t possibly have prepared myself for, well, feeling all that is heavy.
Ben is feeling it, too. He was gone last week camping with his good buddies, playing Live Action Role Play (LARP). What better activity to engage in three weeks before major surgery? Be a mage or a monster. Collect magical powers. Slay a few evil dragons. (I’m sure I’ve gotten the details all wrong, but you get the picture.) Sounds like good therapy to me. He came home exhausted, happy, and dirty. He took a shower, rested and dove right into a very cranky state of being. Headaches, back aches, general bad mood. Who could blame him?
Mark is feeling it, too, though he rarely expresses it to me. Strong and silent. Removed.
That’s hard for me, if only because I need him and I need to talk to him and feel connected. I process through talk, he processes through silence. I can feel us getting farther and farther apart…floating on the lake…I can’t reach him and that treacherous stuff under the surface? How will he save me from it if he’s too far away for me to reach?
We usually are very good partners, and we’ve weathered hard times over and over, but we don’t do Hospital well together. Over the years, Mark’s been there at the battlefront for all but one surgery. I’ve been there for half of them (seven, if you’re counting). When Ben was in Children’s Hospital having his brain surgeries we were both there, in our little shells, trying to just survive. I remember one day, taking a break at a local café while one of the grandmas stayed with Ben in the ICU. We were nearing the end of our time there, we both knew that. Ben’s wound was finally responding to treatment and healing and he would be released soon. We sat quietly at the window of the café, drinking our coffees, nibbling on lemon bars and brownies. I asked Mark to talk to me about what life would be like when we finally got home, what we would do, how we would manage the transition, and he just wouldn’t do it. Couldn’t do it.
I feel the need to plan and project into the future. I want to be prepared for it. What will happen? How will I deal with it? What if? What if? Worrying…some might call it that. A mother’s prerogative.
I did it when Harry was inutero. I was so anxious that something would go wrong and we’d be that 1%...Mark’s the math guy… “There’s hardly any chance that will happen!” he told me and my response was: “Yes, but someone is that 1%...it could be us!” Cleft palatte, cleft lip, death in childbirth, stillborn. It happens. I know people it’s happened to. “How will we deal with it?” I remember asking him. “Will you talk with me about how we’ll deal with it?”
And “No. I can’t do that,” was his answer.
We’re in that place again. He can’t go there with me. I brought it up with him the other night while we soaked in the dark in our hot tub. “I don’t want Ben to have the surgery,” I said. And from him I had silence. Was he listening? Was he processing? Hard to tell in the dark. Even though I know better, I got hurt and grumpy. I hate that. I know better. I know that Mark is processing, too, feeling it too. But I’m still feeling alone and isolated in the moment.
I am tied in knots, worrying about this surgery. Even though I implicitly trust his surgeon, I am worrying. What am I worrying about? That Ben will die in surgery? No, not really, though realistically, it’s possible. That he’ll end up paralyzed? Again, a possibility, but even I can’t go there this time.
No, I am struggling with the fact that 13 of his vertebrae will turn into one long bone in his back, an irreversible change that will affect him for the rest of his life. What if he can’t stand how it feels? What if he doesn’t want to be touched or held or hugged anymore? What if he can’t ski or ride a bike or be active the way he wants to be? There’s no backsies on this one, people.
This is regardless of what I’ve already heard from many folks. That it’s the right choice. (Hell, it’s hardly a choice. More like an inevitability.) That he won’t be hindered by it…he’ll be able to ski and be active, indeed he’ll need to be active to feel his best. And that’s great because at his core he’s an active guy, and he’s lost that along this very hard way.
After all these years of going into and out of surgeries, it will most likely be a huge relief to be done with all that. But I can’t imagine what he’ll feel like to have so much metal in his body.
I can’t imagine how he’ll feel to have lost mobility in his core.
I am afraid to watch him in pain in the hospital, recovering from an 18” incision, his vertebrae being removed, ground up, packed back in with rods and screws. I’m terrified about seeing him in pain. I want to run away to another continent when I think about seeing him that pain. Oh my god. How will I deal with that?
I’m having trouble with it all.
Last night we had our last night as a family, all together, for the next five weeks. Toby’s off to summer camp today and when the camp buses return him to us in two and a half weeks, Ben, Mark and I will pick him, go grab some dinner and then drop Ben and me off at the airport to head down to LA for the surgery. (We planned it that way. Toby wanted at least one hour with us before we were off.) Mark will join us the next day. And the day after that is Ben’s surgery day. Ben and I won’t come home for another two plus weeks.
We wanted to have a blissful family time…dinner, game night…laughing…happiness…but, predictably really, it devolved into bickering between the brothers. Toby, hyped up on nerves about leaving; Ben, cranky with transitioning home after his camping adventure; Harry, resistant and uncomfortable about change of any sort…Everyone got on everyone’s nerves. In the end, even though the two older brothers went off to watch a movie together leaving Mark and me to play some games with Toby alone, it was okay. The tension was somewhat relieved. And before bed the older brothers came out to hug their baby brother good bye and wish him well at camp.
And now, as I look at it, I see where I went wrong. I wanted us to be blissful and happy, as if we weren’t all stepping off the dock into those treacherous waters together. Telling everyone, “It’s our last night together as a family for five weeks” was the death knell to a lighthearted family night. What was I thinking?
I need to process. I need to be in it to get out of it. And all I did was stir it up for them. Yet, if I hadn’t? If I hadn’t alerted them to the fact…Pay attention people! This is the last night we have together for a while! Take note! If I hadn’t said that, I’d be blamed later for not having warned them, alerted them, called attention to it all.
The thing is I haven’t been just preparing myself for what’s coming. I’m busy preparing everyone in the family. It’s my job. My thankless job. And yet, not thankless. I know that though they push back, they can see I hold it for them and I’m there for them when it’s time for a hug or reassurance or healing.
And so, I will continue to worry, and predict, and consider what is hiding under the surface. And lure their worries out of them too, consciously or unconsciously, it’s what I’ll do.