Scarlett and I have been watching a new show called Just Add Magic. It was recommended by a friend at school, and it seems my daughter is learning the concept of binge watching. We do three episodes in a row, and they’re only 25 minutes long, but still, when one ends we look at each other with that look that all obsessive television viewers know, the one that says “should we do another yes we should do another let’s do another right now.” The show is about three 12-year-old girls who discover a magic cookbook. It is awesome.

On Friday, while we were watching, we opened a bag of chips and Scarlett fed herself and me. I’m not a big person, but I can take down tortilla chips like someone three times my size, so it’s pretty frustrating to not be able to just do it by myself. Every five seconds, I was saying “chip please,” which quickly changed to just “chip” so that I wouldn’t interrupt the show quite as much. Finally Scarlett got annoyed with my constant chipping. “Stop saying that,” she ordered, stuffing two triangular blue chips into her mouth.

“Well, I’m hungry,” I said. “What do you want me to say?”

She thought for a minute and then conceded that I could say “Beep.”

I beeped my way through two more episodes and we finished the entire bag. It’s fun to spend time with her in the afternoons like this, because normally she has so many activities that we don’t get to just hang around. But I’m also becoming very aware of our limitations, in terms of what we can realistically do together. That our shared interest centers around a TV show is fine with me,  I simply wish that we were able to do more. But even reading a book to her is getting difficult. Holding her on my lap has changed, as she is growing so rapidly that I am pretty sure she will overtake my own height by the time she is eight years old. When she leans against me, my instinct is always to put my face into her hair and breathe. But, oh, the breathing. It’s presenting a problem, one that is exacerbated by having a 50-pound child tucked into my lap. Our days are dictated to us by ALS. We do what we can, and we enjoy doing it, and maybe that should be enough.

One night this week, I was putting Scarlett to bed and we were talking as we often do, because this is prime stalling time for her, which means it’s a great time to say “Mom, I have three questions.”

I then sit there while she tries to come up with three questions to ask me.

But that night, instead of questions, she wanted to talk about names. She said my full name out loud “Sarah Elizabeth Coglianese.” And then “if you sing your name, it sounds like it has a lot of wavy lines in it. But when you sing my name, Scarlett Joan Goulding, there aren’t any wavy lines.”

I found this fascinating. I listened to her singing our names. It was really only after Scarlett was born that I seriously considered taking Rob’s last name. I actually started considering it again recently. I guess I’m wanting my connection to them to be as tight as possible, even while much of it slips away. There are people who will object to that line, who will tell me that nothing could diminish the connection between me and the people I love. But I’m not talking about our emotional ties. I’m talking about how we, all of us, bond by sharing things that we enjoy doing. Scarlett and I both love to cook, and to dance, and to run. We can’t do these things together. That’s just a fact.

Then Scarlett announced that she was changing her name. “To Scarlett Elizabeth Coglianese.”

“Ok,” I said, smiling. Maybe the whole family can change our name, except I doubt Rob would be on board. And then, of course, there’s the dog. Full name: Otto Joan Goulding. It really seems to suit him, although I don’t know whether or not there are wavy lines when you sing it.

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