Category Archives: Parenting

A Day in the Life

Sometimes I think that people wonder what I do all day. I mainly think this when they ask “so what do you do all day?” No one is saying it in a challenging way, they just seem genuinely curious about how I kill spend my time. So I thought I would share a day in the life of me with ALS.

Monday

6am: Rob leaves for Chicago, and my assistant Marianela arrives. Otto is let outside. I’m awake, but exhausted. I decide to stay in bed longer even though it’s totally uncomfortable.

6:45: It was a good effort, but I can’t ignore the pain in my back and my feet anymore, so I call for Marianela. She lifts my head and my legs and swings me to the edge of the bed. Then she picks me up and puts me in my chair. I wheel to the bathroom, where she gives me my medication and puts my contacts in for me. We are trying to be quiet because, after a big weekend in Arizona, Scarlett is still sleeping.

7:15: Scarlett wakes up. She gets dressed, and I try to convince her to have breakfast. She eats three pieces of cereal. Read More>

How Quickly Things Change

Rob and Scarlett got me a new phone for Mother’s Day. It worked for a few hours, and then just kept turning off. Although I will need to get it fixed or replaced eventually, I found that I was in no hurry yesterday to do so. When I have a phone around, I’m always on it, and I’m sure that most people reading this are the same way. I’m checking my to-do list, scrolling through Facebook, reading email, sending Bitmojis, doing crossword puzzles, even paging through books.  Occasionally, I use it to make phone calls. But yesterday, I couldn’t do any of that and it was sort of awesome.

We met my sister and her family at a playground, and I got to hold Fiona in my lap almost the entire time. There was no room for a phone. Then I hung out with Scarlett while she cleaned the garage, because that is the kind of child labor I can get behind. I read a magazine, and threatened her with various consequences when she started whining that the job was too hard. Ha ha, Mother’s Day wins. Again, I was happy to be phoneless, so that I could really focus on my task of drill sergeanting. Read More>