I sit in a shadowy, windowless room, 8 paces by 6. It must be an old storage room that has had a bathroom added to it to provide a kind of halfway house for parents of patients here. A place to come and spend the night (or nights) and to try to keep up with all of the meds, and feedings, and changings, and monitorings, and checking, and all the rest. It is quiet here, which is nice, and encourages the kids to sleep more than they normally would, with all of our usual comings and goings.
And it’s a nice space, with faux hardwood floor, chair rail and crown molding, and fancy tile in the bathroom. A small flat-panel TV and a new sleeper couch with matching chair make it feel like some good-hearted administrator somewhere leaned toward a conference table and said, “let’s make it nice.” But it’s also bare, which means that said administrator’s moxie must have run out by the time ‘wall hangings’ made it onto the agenda. Still, the chance to sleep in a little, and nap, and just generally hang out with our kids keeps me from complaining too much. When I first came into the room to drop off our giant collection of bags, I heard the door latch behind me, looked around, and felt like I had been convicted of some kind of white-collar crime. But when the two kids took their respective places, there was light and life to spare.
Our time here has a bit of an edge to it, though. The whole experience feels a little like an extended job interview, with everyone watching us and our reactions and our stress levels and our ability to rise to this formidable task. We feel all of this, and so try to strike the right balance in our interactions. We ask questions (but not too many). We show a willingness to forgo sleep, and distractions (but not too much). We forge ahead when slightly uncertain (but not too far). We make sure we present a positive (but not unrealistic) outlook. We want the staff to know that we can handle the care of our family, but that we also understand the gravity of the situation and the difficult road ahead.