Of Foam Weapons and a Boy's Bedroom

Ben's scoliosis was the biggest worry of the past year, of course, and it was all-consuming. From the day we found out about its progression (Feb. 2009) to the numerous doctors' and specialists' appointments to the surgery (Feb. 2010) to the recovery period, it was hard to fit anything else into the same bandwidth. Every day I had some item on my To Do list related to Ben, and sometimes I even made a note to be sure I spent time with him in a way UNrelated to his medical condition.

Ben's scoliosis is not troubling me right now. At his last x-ray (7 weeks post-op) his curve measured 15 degrees, down 20 from the 35 degrees measured in Philadelphia before his surgery. It looks about the same as it did just after surgery, practically straight! You can look at that x-ray here. A tremendous improvement. I am now able to feel that much more confident about the process we're putting him through.

His separation anxiety, which was accute both pre- and post-surgery has calmed down enough that he survived my two absences in the past few months (to Sacramento and England) without issue. This week also saw him moving back down into his own bedroom, a move that is significant. Last summer we set up his first private bedroom, complete with posters from his favorite comicbook villains and one of his favorite video games. We picked a color scheme (red, black, white, and gray) and got new linens. We set up his new drum kit. And two weeks later (coinciding with his getting his back brace and being extremely unhappy about that) he decided he didn't want to sleep down there, but upstairs in the booknook, just around the corner from Mark's and my room. We traded the loveseat in the 'nook for his red and black bed and let it be. He could have been sleeping on the floor of our bedroom, after all. He's slept there ever since. Until this week.

My mind has eased up on the worry mostly, though, because of Fanwar, Ben's absolute favorite activity. Several times a month, sometimes even twice a week, Ben (and Toby) meet up with a crowd of other kids and one amazing man, Christopher Melville, at a park in Sonoma county to spend the day acting out a fantasy adventure replete with monsters, mages, orcs, and trolls. And weapons. Don't overlook the power of those weapons (made from insulation foam, duct tape and PVC pipe). There is a tremendous amount of running around, battling with foam swords and other weaponry, story-spinning, casting of spells, healing of wounds, and laughter. Think Dungeons and Dragons Live. Since our discovery of it several years ago at a homeschool conference, it has been Ben's idea of the perfect day. But it was a little hard to picture putting yourself in the way of a falling foam flail when you have three scars healing on your torso, so Ben sat on the sidelines, actually didn't even want to go at all, for the first several weeks post-surgery. About a month ago, Ben and I coordinated our family calendar with the Fanwar calendar, and now we're booked for many day-long Fanwar events and four week-long Fanwar camping trips this summer. The day a few weeks ago I saw him get out of his chair, don his armor (his camoflage-patterned protective brace) and tear off to run, bend, kneel, and battle, to engage in the adventure, I knew he had hit a milestone in his recovery. He puts his whole being into the act.

You've seen this photo before. Ben in his camo brace.

Much more palatable than his other brace which was a restriction for him both physically and mentally.

I have great compassion for any parents who must walk alongside their child as he or she walks such a challenging life path. It is the most difficult thing I've ever done. I have spent a lot of time grappling with not being able to change it for him, not being able to make life much easier. I have to remind myself to be more patient, more giving, to not expect life to be the same after so many critical events.

We adjust to a new normal.

This pondering makes me wonder then why I cringe when now and then, at age 12, he asks me to tie his shoes. Whether his reason is it's hard to bend over, or he isn't very good at it, or he's lazy, or he wants to act like a baby a little longer, or he knows it's something I can actually do for him, why do I cringe when, really, isn't it the least I can do?

Ben has an x-ray coming up in June, 3 months post-op, and after that we'll hear from the doctors at Shriners about his next surgery to lengthen the rod in his back. We're expecting it to be in September, but no plans have been made yet. It's a much more minor surgery, and if we can swing it he won't even spend one night in the hospital (just go directly to the Ritz-Carlton!). I guess that's far enough away for it not to be a worry. I can live with that.