My sister is going back to work tomorrow, after a six-month maternity leave. It gives me flashbacks to when I went back to work after Scarlett was born. I had a very leisurely seven-month leave, and when it was over, I worked from home in my dining room, while my sister took over as Scarlett’s nanny and best friend.

Right now my parents are in town to help with the transition period, before my sister has to hire someone to take care of her two kids while she works. I wish it could be me. I would love to have that time with my niece, the way my sister had with Scarlett, to bond and play and snuggle. I want to be my niece’s favorite aunt, but how is that possible when I can’t even pick her up? I remind myself that my 4-year-old nephew hardly cares at all that I’m in a wheelchair, only noticing really that it’s cool because he gets to ride in it. He was born one month after I was diagnosed with ALS, and he’s never known me any differently.

So I won’t be the nanny, and I won’t be the aunt who picks them up and swings them around, who bakes with them and plays soccer and all the things that I would like to do both with my own child and with these two children who I feel are nearly mine. I’m not exactly sad about it. I’m so used to the situation by now, that it just feels natural to sit in my chair while someone brings the baby to me so that I can kiss her. My nephew puckers his lips and stands by the side of my chair for his kiss. I’m in a wheelchair. For the rest of my family, it’s surreal. For these three kids, it’s totally normal.

“Put my arms around you,” I tell my daughter and my nephew. And it sounds so strange, like the mixed-up-pronoun declarations of a toddler. But I’m really asking them: help me to hug you, because it’s very important to me that my arms can get around you still.

I have always been a hugger. I used to hug my clients in New York, which, now that I think about it, probably alarmed some of them. But I’m an affectionate person, trapped inside the body of an old recluse who fears physical connection. I don’t shake hands anymore, my fingers fixed firmly in my lap. It’s not me. ALS is the coward. Yesterday, I was trying to reach for Fiona’s hand. It was an inch from mine, but I couldn’t touch it. Instead, I shimmied my blue painted nails at her and she grabbed for them. A small victory, I thought, holding hands with my niece. Note to self: keep your nails brightly painted, so you can draw the children in like hummingbirds.

What would life be like if I could drive Scarlett to school, head straight to my sister’s, and take my niece to music class? Pick up my nephew from school and make him a snack? Pick up my daughter and sing together in the car, because our lungs are strong and we feel like making a beautiful noise? What life is like instead: these children come to me. I wink at them and wiggle my nose. I am a cartoon character, I am bewitched. I don’t care. I will take any part of them, any way I can get it. I will hold them close, even if they have to move my arms for me, and they will know – – always – – how much I love them.

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