It seems to be the symbol of all my guilt and grief at this point. Why? I was not at home when Sarah died. I had gone up to New York City on Tuesday afternoon August 16 to help my Dad, who is 90, tour an independent living facility in Albany. It was so rare for me to leave Sarah, and she didn’t want me to go. Of course she had her father with her. I also hired a caregiver to come in during the days, 9 to 5, while I was away. My husband has a really hard time functioning in the mornings and also, you need breaks when taking care of Sarah or really any other kid. You can’t do it alone.
The caregiver really just needed to be there in the same room with her, because she was really happy watching YouTube videos, playing Minecraft and so forth, and she also needed to be changed. She was potty trained for poo since she was two and rarely had accidents but wore pull-ups for pee. She didn’t have the muscle control to urinate on the toilet. She also needed help repositioning and getting comfortable. And she needed company too and interaction.
Our long-term caregiver, Mrs. M., had a Covid baby and was unavailable. I had to cast around for someone else for the Tuesday afternoon to Thursday afternoon I would be away. I found a school system paraeducator who worked with special needs kids for extra money. I don’t remember her name; let’s call her Graciela. Graciela certainly understood Sarah’s disabilities but she seemed used to much younger children. Tuesday before I left I could see that Graciela was speaking to Sarah in that idiotic sing-song tone of voice that people use for the disabled sometimes. She also was trying to structure Sarah’s time into 15 minute increments, as if Sarah were at pre-school, telling her it was time to turn off the Ipad and practice her eyegaze communication device or some such thing. Max and I cautioned Graciela that Sarah was free to do whatever she wanted for however long she wanted, and that her eyegaze should not be used as some sort of chore for her. Graciela listened, but not really. It was obvious that Sarah was not particularly pleased with Graciela. Max and I agreed that Graciela would have to be monitored and reined in.
I gave Sarah big kisses around noon on Tuesday August 16 and got into our wheelchair van for the drive to NYC. There was a family dinner that night with my father, brother, sister-in-law, nephews and niece. I spoke to Sarah and Max around five pm, with more kisses, and again to Max around ten. Wednesday morning the 17th Dad and I drove from the city up the Taconic Parkway to outside Albany. My father liked the facility but seemed uninterested in actually moving there. We stayed in a hotel that night. I spoke to Sarah and Max again at dinner time. I told her I would see her the next day, Thursday, and I couldn’t wait to give her a thousand kisses. She squealed and sighed happily. Max said it was obvious that she didn’t like Graciela very much but she was doing fine.
On Thursday the 18th Dad and I set off back down the Taconic Parkway first thing in the morning after breakfast. We initially got lost and went the wrong way but I was able to turn around and head in the right direction to NYC. I took my Dad to his apartment building on the Upper West Side in NYC and then l saw that I had multiple messages from Max in my voicemail and texts too. I called and, sobbing, he told me that Sarah had died, that he went into her room because she had slept late and found her blue in the face and called the rescue squad. I couldn’t process this information. I thought he was making a mistake, that he had mixed up Sarah’s name with that of Polly, our dog, and that he meant that Polly had died.
Sarah had seizures, pretty well controlled with Lamictal, so the working theory is that she may have died during a seizure. But no one knows. The hardest thing for me is that I wasn’t there. I was on the Taconic Parkway.
The First Year Without Sarah 