What's been on my mind the last few days has been Robert and family life, as we move from the highly structured world of the school year into the summer when his care gets difficult and complicated. Robert requires so much assistance that I always feel we fall down on the job in the summer: trying to move among all the parts of our lives and include him at all levels is complex because it's an effort to constantly include a non-mobile, non-verbal child. If we're all buzzing around the house getting picking up and bills done, cooking, etc., the likelihood that he'll be left sitting alone is high, so the TV goes on. And that just feels bad. I'm trying to keep him in his wheelchair more often, rather than in his feeder seat (kind of a lounge chair that sits on the floor and doesn't move easily), because that enables us to more quickly get him where we are.
What's hardest, though, is cooking and eating. Robert can't eat--he can taste some things, but his digestive tract is so delicate and so unused to anything except formula that even the mildest things--popcorn, butter--can set it off. That's what happened at the movie theater today. Going to restaurants, having family dinners are all difficult because the poor kid just sits around looking at us. Generally, Roger and I just try to eat together after the kids have gone to bed. It's less guilt-inducing, and we get a chance to eat something we enjoy. We all spend time together talking or watching a TV program we like (and talking about it) in the early evening.
Robert ate just about anything once he started eating table food, until he got sick at 13 months. So I hate to deny him taste. And so many easy treats for kids involve food of some sort. Trying to find small incentive rewards is so difficult. When I was a kid, we'd swing by the cree-mee stand for a treat. Edith likes to buy gum or go to Ben & Jerry's. I try to fill in for Robert details of our lives since he can only taste bits of melted ice cream left on his lips--what the first Ben & Jerry's was like in VT when I was in 6th grade, how Grandma and Grandpa wouldn't let me go because it was run by hippies, and, frankly, was a pretty dilapidated place. They rented an old gas station, but couldn't afford to renovate it. They brought in old diner booths and kind of stuck them in. It was pretty rag-tag.
There are days when I can't stand the fact that Robert's life always seems to be a one-ups-man deal of what's worst: not walking, not being able to grab things with your hands, not eating. What would you choose as least objectionable? Which would you be willing to give up?