My thoughts are not coherent enough to organize a real post right now. We are in the thick of medical testing and procedures. Monkey has two surgeries coming up in the next few weeks (actually three, but two of them will be done at the same time by different doctors) and during the last couple of days he underwent a new test which turned out to be even more involved than I expected (and invasive – the only reason they say it’s noninvasive is because it doesn’t require general anesthesia). This particular test – especially the process of setting it up – was so bizarre and convoluted that I felt like I was on an alien spaceship watching giant-headed people perform experiments, or perhaps witnessing the arcane methods of alchemists who’ve been handling a bit too much mercury.
“Dip the wire into this vial of solution and hold your child’s finger in it, then dip it in another vial and hold his finger in that, and voila! Elixir of youth! … Oops, I meant to say that the machine is now calibrated.”
It was odd and complicated and made me think about how odd and complicated many medical tests are – polysomnography, for instance. Medical complexity introduces one to a new world, a sort of underbelly of respectable society, where people are routinely hooked up to 500 wires at once or sent home with recording devices wired to internal organs. I’m trying to find humor in it because the alternative is crying about how much Monkey has had to go through at his young age, and wondering whether I’m a terrible mother for consenting to it.
These periods of intense medical involvement are hard on him. They are hard on me, too, because I hate seeing him suffer, and also because they require me to be constantly vigilant – monitoring and adjusting equipment, making notes, sometimes restraining him, etc. I become hypervigilant even in my sleep. I can barely bring myself to eat. Every nerve of my body is focused on him, wired to him like that machine. This isn’t some kind of virtue, just boring old exhausting necessity. It’s all I can think about. I don’t think I even dreamed last night.
I try to find the good parts, the fun parts – the gracious Child Life specialist who accompanies us down to radiology, the giant therapy dog in the GPU, the waiting room for the pediatric specialties clinic that is genuinely awesome (because these are the genuinely sick and complicated kids). I take pictures of the cleaner moments and post them on Facebook, try to make it an adventure. I suspect my family and friends think I’m a bit strange.
“Why” they ask in my imagination (and sometimes in reality) “are you posting pictures of your son playing in a hospital waiting room with a tube down his nose, or with post-surgical drains and an IV visible?”
Partly, it’s because it’s hard to deal with this stuff alone. I don’t want to live in this alien world of wires and tubes alone, don’t want him to live alone there. I want people to know this is our life. This is his life. And maybe if I share it with other human beings who care about him, it will all feel a little less alien, a little more human. Just a little bit.