I just realized today that things aren’t going to get better. Nowhere have I ever read, “Well, the first 7 years were tough, then we really cruised through this rare disease thing”.
It hit me when I pointed out a herd of elk across the street from the cabin we were staying at this weekend. Campbell had spotted them, and I pointed them out to Cooper. He couldn’t see them. They were these large, brown creatures, meandering about 200 feet away from us, and he couldn’t see them. I felt sick to my stomach. It’s starting to click. Yep, he fails the vision screening at school every year. Yes, he glasses for an astigmatism. When he wears said glasses, he says everything is blurry, so the glasses sit in a case in his bedroom. He has recently been diagnosed with the beginning of corneal clouding. This doesn’t usually happen to kids, so no one at Children’s Hospital can help us. We’ve got an appointment at University Hospital in November. I feel like we are opening a new can of worms on this one, and I’m scared.
But we aren’t all done with the last can of worms, now are we? Cooper’s (surprise) spinal decompression surgery was June 4. At that point we were told he’d be in a neck brace for 2-3 months. Let’s do the math…. carry the one…. yep, we hoped we’d be hearing we could be rid of that thing by now, four months later. Yet, the latest note from the doctor is something along the lines of “Things look good. Continue to wear the brace for car rides and high-risk activities, do more X-rays in FOUR MONTHS and we’ll review again”. I nearly puked reading that one. Cooper is an active 7 year old boy. I think most of his life is “high-risk”. Riding his bike, playing hockey, football, baseball and soccer in the backyard. Playing sports at recess. Swimming and wanting to ice skate. Participating in PE. Occasional scuffles with his sister. Maybe the doctor didn’t expect Cooper to be such an active kid and that “high-risk” activities weren’t on the agenda. I should feel blessed that he’s an active kid. I should feel blessed he isn’t really bothered by the neck brace. He remembers to put it on, he can do it by himself, and he knows when he needs it. (We’ve been living by the “high-risk activities” rule for a month now already.) At the beginning of the school year, I told Cooper he could take the neck brace off for his school photos. He forgot to, and didn’t care that he had it on. I’m not going to have him retake the picture without the brace. This is real life, and where he is right now. And he’s happy. Apparently Brian and I are the ones who so desperately want the neck brace gone.
All of this swirling though my head as we now have new dates for this summer’s surgeries for Cooper’s hips, knees and ankles. This part sounds like a broken record, I’m sure. This is the exact same place we were last year, preparing for this surgery before we found the severe cervical stenosis that forced the spinal decompression surgery instead of the hips, knees and ankles last summer.
It’s a lot to process. But at the same time, I find myself needing to adjust my filter. When Cooper gets mad at Campbell for something that seems ridiculous, I ask him, “Are you making this sucky?” I try to point out that he can be angry at things, and it can suck, or he can let it go and it won’t be sucky. So at this point I ask myself, “Am I making this sucky?” Yes, it may be less than ideal, but I need to adjust my filter, because it’s not going to get easier.