I’m rolling around on the back deck, trying to find a warm spot to sit in the sun. There’s a laziness associated with this activity; I don’t feel like going back in the house and asking for help putting my shoes on. Otto is circling me, thrilled that we are outside together. I can see my own reflection in the living room windows. My outfit is ridiculous, my hair is disorganized. I am spinning.

Last night after Scarlett went to bed, I was scrolling through emails on my phone, and I came to a Google alert letting me know that Amanda Bernier had died.

“Oh no,” I said softly, but of course Scarlett heard me from her bedroom, where she lies in wait for any sign of drama that might prolong bedtime. “What’s wrong?” she yelled. “Is Otto throwing up?”

By this time I was crying, and I couldn’t get any words out, and she had run out of her bedroom to see what was going on. Rob walked out of the laundry room, some confusion on his face as he asked what had happened.

“My friend died,” I managed to say, realizing right away how many times Scarlett has now heard me say that. I probably wouldn’t have even told her about this, but I couldn’t manage my reaction. I kept crying, and the two of them surrounded me, trying to understand.

“Was she…very old?” Scarlett asked.

“No,” I said, hating what was coming next. “She had ALS.”

Amanda Bernier was 32 years old. Her daughter will be two in November, the same day that I turn 38. I cried until I had a decision to make: either keep crying and stop breathing, or stop crying and keep breathing. A very large part of me wanted to just keep crying, but self-preservation kicked in, and I snorted and sniffed, trying to clear my nose, gasping a little because the grief – – so sudden and unexpected – – had filled up my entire head.

Scarlett hugged me. Rob stood behind me with his hand in my hair. “Her daughter was only one,” I burbled, but Rob couldn’t understand me.

“Her daughter was what?” he asked.

“One.” Scarlett clarified. And then, “Can I see pictures of her?”

It was past bedtime. I should have been putting my daughter to sleep with happy stories, Instead, I pulled up photos of Amanda, her husband Chris, and their daughter Arabella. Scarlett wanted to see them all. I showed her three, and then told her that it was OK, that I was sad, that I had been surprised, but it was time for her to go back to bed. I wanted to go with her, and hold her until she fell asleep. To be physically there.

Is it accurate to say that Amanda was my friend? I hadn’t written to her in over a year. She was on last year’s #WhatWouldYouGive team, and we used to compare notes on what we were leaving our daughters, how we would make sure that they remembered us. Amanda had familial ALS, she lost her mother and her grandmother to the disease, and her mother had tried to reassure her that by the time she was grown, there would be a shot, something to protect her, something to make sure that she didn’t share their fate. But there wasn’t. There isn’t. And Amanda lived with ALS for 2 1/2 years. She had such an aggressive form of it, and was on a ventilator after only five months. She was almost entirely paralyzed when her daughter was born, and still she pushed forward to breastfeed that little girl.

Scarlett went back to bed, coming out only once more for another hug. I stared up at the ceiling for a while, trying to get a handle on my emotions. Rob asked if I wanted to talk about it, and I nodded vigorously, but when he came over, it turned out I didn’t have anything to say.

The last note Amanda wrote to me ended with the words “Have a splendid day!”

Here I am, having found my spot of sun. It’s a beautiful day, maybe even splendid. But I can’t stop thinking about a baby, dressed as a lobster for Halloween, her dad in a chef’s hat standing beside a hospital bed, her mom lying in it, dressed as a mermaid, determined to make memories.

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