As a family, our morning routine needs work. Yesterday was the first day of kindergarten, and despite our efforts to arrive early, we did not even manage to arrive on time. Scarlett wears a uniform, I had planned quick and easy breakfast options, Rob was up early to shower. But it didn’t matter, because, not to be dramatic, everything takes us forever.

Today we actually had to wake Scarlett up for school. This child has never had to be woken up for anything, but we were told that kindergarten can be exhausting, and that appears to be a true story. She rolled around for a few minutes before springing out of bed, ready for another day. Oh, to wake up like that. She then proceeded to eat two pieces of toast and a banana as though it were a three course meal that she was reviewing for The New York Times, by which I mean sloooowly. I know we’ll get the hang of this, and I really don’t want to stress her out, but watching someone get ready at a snail’s pace turns out to be one of my least favorite things.

On the plus side, the first day of kindergarten was fantastic. She may have been the last kid in the class, but it was a mellow morning and no one seemed to mind. It was a half day, only three hours long, and Rob and I attended a parent orientation meeting after dropping her off. I spent the rest of the morning sitting outside, getting to know other parents, before it was time for early pickup. Scarlett was disappointed when it was time to leave, which I consider a very good sign.

Chatting with the other moms and dads felt so normal. I really liked everyone and I felt like we were going to be part of a great community. As we left, I was tired but definitely in high spirits. Things are good.

But things are hard, too. I think about how much I’d like to be more involved at Scarlett’s school, and how it’s just not possible. I’ll do what I can, and of course I’ll be happy about it, but it won’t be half of what I was capable of prior to ALS.

My body continues to become unfamiliar territory. My right arm is mostly useless. I’m going to keep it, for aesthetic reasons, and because sometimes it harnesses enough strength to work together with my left arm to lift things, like my toothbrush or piece of cauliflower. I look down at these arms and I can’t believe they used to lift weights.

I look down further to see my hipbones right on the surface of my skin. Running my fingers over them feels strange, like my body is full of seashells, not bones. These slightly concave structures might hold the sounds of the ocean within, but I am as light as air.

Today is another short day at school. I can’t wait to pick Scarlett up, and to hear about her day, even if half of what she tells me is lies imaginary. I have to admit though, I’m looking forward to a full day of school tomorrow. Yesterday as the afternoon hours unfolded, I felt myself unfolding, too. I couldn’t access any patience for Scarlett’s antics. She was pretty much just being your average five-year-old, but the third time she opened the door and let Otto run loose into the house, I snapped. I’m not going to tell you what I said, but it was not my proudest moment, and there may have been profanity. It would be swell if that profanity does not make its way to school.

We’re in a transition period, which at this point is basically the story of my life. You’d think I’d be able to adjust better, after so much practice, but all the transitions come with their own challenges. We’ll figure it out: the morning routine, the afternoon irritability, the time for snuggles and tales of school days. It’s true that things are hard. But mostly, things are good.

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