Category Archives: Relationships

Where Memories Live

Yesterday, on my 37th birthday, I woke up to the sound of little feet running toward my bed.

“Happy birthday Mama!” Scarlett yelled, her face nearly hidden behind the gifts she was holding. My face was also hidden, behind my breathing mask, and although I wanted to scoop her up and snuggle her, all I could really do was watch her and smile.

Rob unhooked my mask, took off my foot braces, and raised our adjustable bed so I could sit up to open my gifts. Scarlett was most excited about the one she had wrapped herself. It was one of her stuffed animals, a beanie goat who has the same birthday as me.

To be unable to open your arms to your child, is there a word to describe this? I would say it’s unbearable, but of course that’s not true. Nothing that you live through is unbearable. Scarlett climbed in bed next to me and we looked out the window together: ocean, a valley of sleepy houses, the cotton candy sky.

“Look at all the old memories in the sky,” she said.

Whoa, I thought. But what I said was, “What do they look like?” Read More>

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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>

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Going Places

Scarlett’s school had a very special visitor this week. The legendary Jane Goodall came to speak to the students about realizing her childhood dreams of traveling to Africa to live among wild animals. This is seriously so cool, and among the parent group (who was not invited), the general consensus is that the girls have no idea how lucky they are to have met such an amazing woman.

Scarlett has a great book called Who is Jane Goodall? (thanks Emily G!), and she and I sat down to read it last night. Scarlett was particularly interested in a story about Jane digging up earthworms, then bringing them home and putting them under her pillow so she could sleep with them. Scarlett looked at me with wide eyes. Actually, so did Rob, who immediately interjected with something along the lines of I hope that never happens here, as if by merely reading this passage, I was encouraging Scarlett to snuggle up with live bait.

“That will never happen here,” I assured him. “Jane’s mother explained to her that the worms needed to be in their own homes, and Jane put them back in the garden because she was a good listener.”

Scarlett ignored us, which is one of her finest skills. Read More>

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