The first time I took Andrew’s oldest daughter—I’ll call her Elizabeth–out for some “quality time,” I flunked. Elizabeth has a syndrome called Smith-Magenis, a rare chromosomal anomaly that brings with it a collection of unusual symptoms.

The plan was to get coffee at McDonalds and then go to Deseret Industries to look for 1) small note pads 2) large spiral notebook and/or loose notebook paper 3) a Bible with crinkly pages (I’ll explain this one later). At MacDonalds, I pulled up to order with plans to get a small decaffeinated coffee for Elizabeth. The words never made it out of my mouth: she hollered—she has an exceptionally resonant voice– across me that she’d have the Big Breakfast with pancakes, biscuit, scrambled eggs, hash brown and sausage with all the sauces and condiments, a chocolate chip cookie, a cake-pop and a large coffee.

I sat there frozen, absolutely stunned. I had been with Andrew many times, taking Elizabeth out. He managed her meals and her behavior easily. I wasn’t Elizabeth’s mother; I couldn’t object on the grounds of the dubious health value of the food. Elizabeth was a 36 year old woman at that time.

“Elizabeth,” I said. “I’m not going to pay for all that.”

“That’s ok,” she said. “I have a gift card. It has $25 on it.”

We pulled up to the window to pay and collect the meal. Elizabeth’s gift card had 67 cents on it. I paid.

Elizabeth has money but it’s in an account and she needs to have her debit card to access it. My concern here was to not set a precedent and establish expectations. She was finding out how easily and how far she could push. I felt like a passive child being dragged behind a determined mother.

At Deseret, we found a Bible. A Bible with crinkly pages. I absolutely love this about Elizabeth. She likes to crinkle the pages. Sometimes she rips them all out as she crinkles. Sometimes, she circles all the page numbers as she crinkles.

One of the reasons I love it is because I get the crinkle. When I was a kid, I went to the library every week. I stationed myself near someone who was browsing in fiction and listened to them run their fingers along the spines of the books and occasionally take one out to read the fly leaf. This is back in the days when all library books had protective cellophane (crinkly) covers that made noise if you touched them. The sound of the crinkle felt like fingers running up and down my spine. Much later in life, I learned there was a term for the relaxing sensation I felt there in the library: ASMR. Autonomic Sensory Meridian Response. Elizabeth says she does it because it gives her hands something to do. I suspect she also finds it calming.

The other reason I love this idiosyncrasy of Elizabeth’s is because she is ridding the world of Bibles, one book at a time.

I told Andrew about the debacle. He told his other daughter, Sarah, and they had a good laugh at my expense.

The second time I took Elizabeth out, again to Deseret, I managed a little better because there was no ordering of anything, anywhere. But on the way home to the apartment where she lives in a complex with 24 hour care, she wanted to stop at the leasing office. She often walks down there because they have a Keurig and a bowl of candy; also dog biscuits and poop bags, which she gives to her dad for Stella, the border collie.

She made a beeline for the Keurig. By the time I had ascertained that there was no decaf, she was already inserting a pod.

“Elizabeth, that’s not decaf. You’re not supposed to drink it.”

“It’s ok. I’ve done this before.”

I was sure she had. I grabbed the Keurig pod. She grabbed it from me. I grabbed it from her. She grabbed it from me. Finally I let it go. She made her coffee.

When we got out the door, I said, “Don’t you ever do that to me again.”

“Okay,” she said agreeably.

It was more out of spite than a sense of duty that I poured the coffee out when I got her home.

I’ve managed to hold my own much better as we’ve gotten to know each other better. I’ve learned to plan ahead. To get her a coffee on my way to picking her up. To say up front what I will and I won’t do. One thing I won’t do with Elizabeth is order food anywhere.

Elizabeth operates without much of a filter. She has an attention span of about five seconds and is prone to tantrums. Early in Andrew’s and my relationship, we had a family gathering for Thanksgiving. Twelve of us around the table. Elizabeth turned to me, “You gonna sleep with my dad tonight?”

Besides the Bibles and the coffee obsession, Elizabeth exhibits some classic Smith-Magenis traits. She has a broad, square face and she grinds her teeth constantly. She needed speech therapy when she was younger. She has inverted circadian rhythms. This wasn’t discovered until she was finally correctly diagnosed when she was 22 years old. Andrew describes being awakened two or three times a night, every night for 22 years until they got her on the proper medications.

Elizabeth has a photographic memory for names and faces. She’s very social; she talks to everyone, asks if they have pets, if they have cousins, what are their children’s names, if they’ve ever been to Lake Washington, what they had for dinner last night, what are they having for dinner tonight.

Once at a Safeway Starbucks, she carried on quite a long conversation with the friendly barista. As we were leaving, I said, “You must know Elizabeth pretty well.”

“No,” she said. “This is my first day.”

She also does this thing where she screws up her face and presses her fists hard into her cheeks. I take this to be a way of trying to contain overwhelming feelings. She did it the first time she met me. It reminds me of a time in my life when I could get overwhelmed with panic, most often, but sometimes with laughter or pleasure. I’d feel like I was spilling out of myself; I had strategies for getting myself safely back inside. I think that might be what Elizabeth is doing.

I also get the coffee and the food. If I lived in Elizabeth’s complex, I’d probably be down at the leasing office, diving into the candy bowl. When I go to a church bazaar, I always get a cup of weak, horrible coffee. Always. Maybe just because it’s there. It’s warm, it’s something to have in my hands, to sip at. It’s comforting. It (sometimes) keeps me from buying pastries. It doesn’t keep me from buying the fudge.

Smith-Magenis is rare.

So is Elizabeth.