I canceled all of my appointments for this morning, feeling too tired to deal with the real world and the people who live in it. It’s raining outside and Otto is pacing the floor. I spent an hour reading blog posts that I wrote to Scarlett in 2011 and 2012. They didn’t make me sad, but I did feel nostalgic for a time when she was a ferocious toddler and I was her complete mom. I know, I know. I’m still her complete mom, but that’s not what I mean. I mean the mom who moved, who drove, who carried her across the city, even as I began experiencing symptoms of ALS. I read blogs about her first few days, weeks, and months at preschool. When I knew I had ALS, but I was still so mobile that I saw no need to acknowledge it.
Right now my sister and her family are in New York, and when I facetimed her this morning, she immediately put the phone up to the street sign over her head: 23rd St. and 10th Ave. Where Rob and I used to live. They were going for lunch at our favorite tapas restaurant, a place we frequented when we lived in Chelsea. I miss New York. I miss those early days of Scarlett in San Francisco. Sometimes I wish I could go back for just one day and appreciate the use of my legs, the strength of my arms, my ability to be alone with my little girl, or to jog along the Hudson River, just to be in charge of my life. But in most ways, I don’t want to go backwards. This month has been busy, but fun. We went to a gingerbread house decorating party yesterday, and Scarlett has a winter sing at school tomorrow. In the mornings, we sit together at the dining room table while she eats a scone and tells me stories. Who said what, who did what. She laughs and uses the words like and dude. She is so different from that feisty baby I remember, and somehow still the same. Read More>