Remember I said we had 30 stairs? I was wrong. It's 29. And the ambulance drivers had never seen anything like it. There was no point getting the stretcher out because they couldn't carry it up the stairs. So they picked Ben up in the blankets he was lying on and carried him in what, from a distance, looked like a body bag.
It was exciting to see him make his ascent today, but once we had him in the medical bed in his room -- beside the reclining wheelchair which will be his other main destination for six weeks -- reality set in.
D'Arcy took the other kids out for a treat and I got panicky. I put my back out at the hospital yesterday and Ben's like deadweight in a heavy body cast. He needs to be repositioned frequently. Because of the way he was casted, he can't sit on a toilet so he has to use a bedpan and urinal and we've had some accidents. He's bored and uncomfortable and at times demanding. "I hate my cast" is one of his favourite comments on his iPod.
I'm struck by all of the parents who need to lift and physically care for their children all day long. How do you do it?
The stress and exhaustion of the last week are playing out between D'Arcy and I. We seem to have fallen back into the "roles" we played when Ben was much younger and had repeated health problems and hospitalizations: I magnify everything, and he minimizes everything. I feel he isn't taking things seriously enough, and he thinks that if I'd just calm down, everything would be fine.
There isn't any redeeming quality to physical pain. I know we've talked a lot about accepting our children with disabilities, but that can never mean accepting pain. Ben had periods of terrible pain this week. I listened too many times to other children on the unit crying out: "No, stop, you're hurting me" for what seemed like an eternity. It made me feel so small and weak.
At one point I sat in the hall when a team was having great difficulty catheterizing Ben, who was being held down by D'Arcy, and I tried to do Tonglen meditation, which you may be familiar with if you read Buddhist nun Pema Chodron. I breathed in all the pain and fear, and I breathed out peace and comfort. In and out.
But Ben screamed till he was hoarse and finally I had to go in and say "I can't do this anymore." They gave up and called the urologist.
Pema talks about using our pain to develop greater compassion for ourselves and others. Perhaps that's possible for adults. But when I was in hospital this week, pain in children seemed crushing, not character-building.