Category Archives: Life

Little Sister

Ask anyone with ALS. We are all fighting for our lives, but we have a list (sometimes a very short list) of the people for whom we’re truly fighting. My sister is very, very high on my own list. She is one of the MVPs of my story, a long-time fact that has only been underscored by my present situation. It was her birthday yesterday, so we celebrated. But the truth is, she is worth celebrating every day (or…at least once a week.)

I’m four years older than Liz, and when we were younger, we didn’t always get along. I found her to be very annoying and also cuter than me, which—if you’re someone’s younger sister—is the recipe for getting punched in the head. And I’m sure that did happen to her, although it was a great number of years ago, and so I conveniently forget the details. Read More>

|Categories: Age, Life, Relationships | Tags: | Permalink

Wising Up

Rob is out of town again. It should be fine, since he barely travels for work anymore, but even once a month makes me anxious. I think it’s more the build-up to the trip that I dread than the trip itself. It’s easier when he’s here, because we have an understanding, a way of managing my illness, our daughter, our schedules. When he’s gone, I worry that it will all fall apart. But it never does. I have plenty of help, including family who traveled to be here this week.

Last night, Scarlett climbed into my bed. “Daddy isn’t here and I get to sleep with you!” She had the beginnings of a cold all day, but it wasn’t until night that they blossomed into full-on congested coughs, snorts and sneezes. Neither of us slept, and now she’s home from school, watching My Little Pony: Equestria Girl. As an aside: this movie is TERRIBLE. I tried to turn it off, but she begged to keep watching and I gave in. It’s 9:30am, we’ve already read six books and had a dance party (she spun, I laughed.) About an hour ago, I began to wonder why I didn’t just send her to school. Then she started hacking in my face, and I remembered. Read More>

|Categories: Age, Life, Parenting, Progression, Vanity, Venting | Tags: , , , | Permalink

Things that Matter

Today I had this weird thought that maybe people think my whole life revolves around my ALS. Well, around that and around being a mom with ALS, because those are the things that I talk and write about the most. So I’m going to tell you some other stuff that I’ve been up to, because I don’t really want you to think that I write one line a day on Facebook and then kick back, streaming Scandal off Netflix until it’s time to pick up Scarlett at school. I do not do that. Ahem. I do not do that all of the time.

Once a week, I take an Italian lesson with a woman named Paola. Paola comes over and I make her a cup of coffee and we speak Italian for an hour. And sometimes we eat brownies because the lesson is at 9:30am and that is an outstanding time for chocolate. This means I have homework, so at other times during the week (usually the night before a lesson), I can be found studying Italian. Other times still, I can be found speaking to Scarlett in Italian and she can be found yelling “No Italian!” at me. Read More>

|Categories: Life, Meditation, Parenting | Tags: , , , | Permalink