Category Archives: Life

Kinder Kid

The Great Kindergarten Search of 2015 is over for us, and we are very happy with the results. For the next nine years, Scarlett will be attending a school with tons of outdoor space, great teachers, and a lunch program that makes me jealous.

But she was not initially thrilled by this news, mainly because she is in a contrary phase. “Daddy and I have something exciting to talk to you about!” I said, once our decision was made.

“It’s not exciting!” she yelled, after I had given my spiel, full of warm and fuzzy observations about the school. She dashed out of the room.

“I think you might have oversold that,” Rob said.

Perhaps. First of all, it did not involve Care Bears. Second, Scarlett doesn’t know the details of The Great Search, which included the difficult decision to leave her current school, a wonderful place that offered her a spot through 8th grade. She doesn’t know that we spent months going to tours and open houses, filling out applications and sending emails. She doesn’t know that last weekend was spent trying to determine where she would thrive for the next nine years of her life, a discussion neither Rob nor I took lightly. Read More>

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My Birthday Girl

Dear Scarlett,
It’s your birthday and I am using this space for your birthday letter, a letter I used to post each year on a blog I wrote just for you. Life gets complicated, baby, and these days, most of the notes and letters I write to you are private. Today, I’m posting your letter here, so that I can share my thoughts on you turning 5 with a larger group of people. And because I always love to celebrate you.

Last night, you and Daddy and I sat at the dinner table and talked about all of your birthdays. Your first, when you had the hairstyle of an aging CEO, and you ate carrot cake and bounced to Beyoncé in the living room. Your second, when we started our tradition of filling the kitchen with balloons and presents. My ALS hadn’t been officially diagnosed, but we knew it was a possibility. That day, you and I took our first cable car ride together. The city rose and dipped around us, but we sat steady on a bench, holding hands and blinking against the glittering buildings. You were wearing butterfly wings.

On your 3rd birthday, we had a real party for you and your friends. Your amazing music teacher performed, and she ended the show with We’re Going to be Friends by The White Stripes, your favorite song at the time. I was limping, even in ankle braces, and I broke the news of my ALS to more than one curious parent that day. Read More>

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Trickett

I wrote an essay for The New York Times in 2013, about parenting with ALS. And every time a new comment came in online, I was nervous. I hadn’t talked to many people with ALS and hadn’t ever written something in such a public forum. I felt extremely exposed. Then a comment came through that began with the line “You and I share this journey…”

The poster was Trickett Fewell Wendler, mom to three young kids, who had lost her father to ALS and had been diagnosed herself earlier that year. Trickett’s version of the disease moved fast. She was dancing in March, wheelchair-bound in July. I felt instantly connected to her based on her comment, so I looked her up on Facebook (bless her beautiful and unusual name!) and we made a phone date. She was from Wisconsin and sounded like so many of the people I’d gone to school with there. Like so many members of my midwestern family. She was familiar.

I don’t even know what we talked about, we just talked. I had a three-year-old, but Trickett’s kids were a little older and she had to deal with their growing understanding of her illness. I do remember that she was working on an article for her local chapter of The ALS Association, and she was nervous and excited to see it in print. She was an activist for ALS awareness, and very vocal with ALS organizations about her expectations and frustrations around the work they were doing. People listened to her. Read More>

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