My assistant, Juan, arrives at 8:30am. He helps me to the bathroom, and as he walks away, I can hear him singing a song in Spanish. He played a soccer game the night before, he tells me, when I am back in my chair. He wants to know how my night was, and then he settles in to do dishes. I drink my tea and consider, once again, what it means to have people helping me. I’m reminded of a guest post I wrote on my friend Richard‘s blog. Re-reading it, I realize it is exactly 9 months old. My ALS has progressed, but some things haven’t changed.

In June 2014, when I first wrote about needing help, I was struggling with how to handle my growing dependence gracefully. I still am. Sometimes when Juan or my other assistant, Rochelle, are here to help me, I just wish I could be alone. They are so kind, professional, helpful. But the only help I really want is from someone who can give me back my motor neurons.

Juan takes me to school to pick up Scarlett. He parks around the corner, because when we take a spot directly in front of the building, we have found that the van—with its irresistible ramp—quickly becomes full of preschoolers. They run in and out as parents try to corral them, and the last time it happened, they found a bunch of styrofoam pieces on the sidewalk and brought them into the van, so it could “snow.” I’m pretty sure my own child was the ringleader on that one.

So Juan lets me out, and I roll to school. I have to wait for another parent to open the gate, and once inside, I try to get Scarlett to leave quickly. I am taking her to get her nails painted, but this is really code for just getting them cut and cleaned up. It’s something I used to do for her and not think twice about, but now, even if I could get a good grip on the clippers, I wouldn’t have the strength to squeeze them. So sometimes, to make things easier, I just take her with me when I’m getting a manicure. This time, she chooses blue for her toes and purple for her fingers. I decide to do the same.

By the time we leave the salon, I am a little grouchy, because she has behaved exactly like most almost-5-year-olds would, and I don’t find that relaxing. “Can we watch videos when we get home?” she asks. “No way,” I say. Instead we take a walk.

The walk is the best. We go to a nearby playground, where it’s possible to forget that I can’t dress myself, cook dinner, or get in bed without help. I just watch her play. Then, when the police have her trapped inside a green plastic cage, I toss her a magical rope and pull her out. I sort of think it’s telling that in my daughter’s made-up games, it’s the police who are her enemies.

Back at home, Juan is finishing dinner, slow cooker chicken soup. He is sifting through the chicken, picking out tiny bones with a serrated spoon and barbecue tongs. He is intent on his task and looks like a mad scientist. “Look at this one!” he calls to me, holding up a bone I can’t believe he found without a magnifying glass.

Rochelle will be here tomorrow, and she will set up the house for a school committee meeting I’m hosting. She will do all of the laundry, she will remind me that I need to leave a twenty for the guy who delivers food each week. Writing this post has been a very good exercise in appreciation, because I find myself feeling like a jerk for ever wishing away these people who make my life easier. Of course, I’d rather have my freedom. But the daily freedom I still have is mainly thanks to them.

And the soup turns out to be delicious.

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