Monthly Archives: October 2015

Perfecting the Eye Roll

Scarlett is the Person of the Week at school. Last week she came home with a giant poster board and instructions to decorate it with photos or drawings which she would then present to all three Kindergarten classes.

I was excited about her poster. It made me think of the one I created for her first year of preschool. She was two years old and didn’t help with that one, since it was technically an assignment for the parents. I’ve always loved a good art project and I jumped right into it. I wrote her name across the top in bubble letters, decorated the sides with stickers of ladybugs and butterflies, two of her favorite things, added photos of the family, and wrote a few lines about her love of music, dancing, and cheese.

That seems so long ago. When this Person of the Week poster board came home, my first reaction was to wonder how we would get her name at the top so nicely now that I can’t write anymore. I even called my sister, who was in Chicago for a family wedding, to tell her that I wished she was home to help with this project. It was sometime around then that I recognized how severely I was missing the point. Read More>

|Categories: Parenting | Tags: , | Permalink

Weekend of Awesome

Fall is a crazy time. Maybe that’s true for everyone, but for some reason this fall seems more chaotic than usual in our house. Or, if not exactly chaotic, then just busy. This past weekend started with the Friday publication of an essay I wrote for CNN. I was so excited, and spent the morning toggling back and forth between different sites, trying to determine if anyone was reading it. They were! At which point I had to question my decision to send CNN that one picture of myself in the ICU with very, very dirty hair.

I then spent the afternoon at a trampoline park with Scarlett and one of her friends. When they got bored of bouncing, they went outside into a grassy field, dumped dirt on each other, and then found some puddles to splash around in. I put my mud monster into the car about an hour later, and the evening was spent trying to find a child beneath the dank exterior of what looked more like one of those dogs with dreadlocks.

So when I say we’re “busy”, I don’t always mean busy in a cool way. Read More>

|Categories: Cure, Doctors, Drugs, Life, Parenting | Tags: , , , | Permalink

Every Wednesday

Yesterday my hometown newspaper, The Wednesday Journal, featured a front page article about my life with ALS. The writer, Ken Trainor, and I spoke on the phone several times before the piece ran. He visited my parents to get their take on how ALS has affected our family. He even interviewed a friend and former neighbor. And yesterday he came out with a beautiful, thoughtful article that you can read here.

When I was a kid growing up in Oak Park, Illinois, I had a job delivering The Wednesday Journal. If you are particularly observant, you may have guessed that I delivered the paper on Wednesdays. On those mornings, I got up early and went across the street to my friend Stephanie’s house, where the papers were sitting in flat stacks, next to a large box of plastic bags.

First, we folded them up, wrapped a rubber band around each one, and bagged it. They left our hands black with ink, and the smell of it lingered, so that if I picture Steph’s enclosed front porch, even now, I can summon up the scent—fresh ink on paper and her schnauzer named Fritz—that goes with it. We piled our bagged papers into enormous over-the-shoulder tote bags provided by The Wednesday Journal, and headed off on our route. I had the east side of Scoville Avenue and she had the west. For four blocks, we perfected our paper-tossing arcs, standing on the sidewalk and launching the bags onto each front stoop. I loved nailing a perfect landing. Then we went home and got ready for school. Read More>

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