Blurry Boundaries

I took Sophie along with Oliver to Sherman Oaks this morning, making a stop at a vintage toy shop that I'd read about earlier before dropping Oliver off for his saxaphone lesson. Or should I say dragged Sophie along to the appointment? I'm struggling to describe how it feels to occupy Sophie's time when it's not straightforward caregiving. The caregiving includes feeding, dressing, diaper changing, bathing, assistance with walking and -- well -- everything to keep her alive and well cared for. Sophie gets pretty agitated when we're out in stores. She's not comfortable standing in one position or she just can't stand in one position. After a bit of walking around she'll start humming and want to sit down on the floor which means I have to stand next to her and prevent her from banging her head on anything around. If she's in her wheelchair, unless it's literally outside, she gets agitated as well, slumping down, humming, straining at the straps. The vintage toy store had a plastic-covered couch with a vintage television playing reruns of Dennis the Menace and Elvis Presley in front of it, so we sat there for a few minutes while Oliver wandered the aisles. Sophie doesn't like television, so after let's say three minutes, she flung her legs out (they were cross-legged on the couch), kicking me in the process and knocking the Fisher-Price toys off the coffee table in front. We stood up, and I called to Oliver to make up his mind so that I could take her outside and back to the car.

This is all exhausting on a level that isn't even physical. When I start feeling inadequate and guilty over it, I remember the more than twenty years of it. I think of the drugs she's on and the withdrawal effects of weaning her from these drugs. I wonder if she should be encouraged to go out and about, despite her obvious discomfort, or if I should just let her be in her room where she seems content mouthing toys and walking around like an artifically subdued lion. The thing is that when she's in her room, I'll walk to her door to check on her, call her name, and she'll look my way, and I don't know if I'm just projecting my own anguish on to her or her eyes are imploring me to do something about the whole situation. It's a whole lot of mental chatter that makes a monkey mind look anesthetized, to tell you the truth, and I haven't learned how to still it in any other way than to know that it will pass.

When we got back to the house, I fed her lunch and led her back to her room. She sat on her bed, pulled her legs up into a cross-legged position, and I walked out with tears pricking my eyes. I don't feel desolate all the time, so I told myself that Sophie -- who surely must feel shitty a lot of the time -- doesn't either.