A month of birthdaysPosted: June 8, 2009
As predicted, my dissertation has swallowed my life. I promised myself that I’d take a minute to post something on the blog after finishing up my last writing project; it’s taken me awhile to figure out what to say first. Since June is birthday month in my family, I’m starting there. In particular, I’d like to relate a particular set of birthday memories.
The year my sister turned 13 was the year that her seizures returned. I don’t know how long it had been since her last grand mal episode; all I can say is that it was so long that my parents were talking to the neurologist about weaning her off of medication. This was before any of us had heard that puberty is often accompanied by changes in seizure patterns. You can see where this is going…
It was Friday. Some family friends were going to be in town, so I was dusting the bookshelves, using some cleaner that I was spraying onto a rag. I can’t remember the details, now, but in the middle of my cleaning, Lily started to seize. Dad told me to call Mom. She came home as fast as she could from work, and away they went to the hospital. In the rush to get them out the door, I tripped over the NordicTrack and bruised my shin.
They were gone for hours, because the seizure lasted for hours. When it was over, Lily was in the pediatric intensive care unit (PICU). This was when I discovered Monty Python, as Monty Python and the Holy Grail was airing while I was home alone. Alanis Morrisette had a new music video out for the song “You learn,” a song that Lily would come to love; I saw it excruciatingly early in the morning, because I couldn’t sleep. My parents spent shifts, alone or together, at the hospital; I was taken along for brief visits, mostly during shift changes. Local friends visited the PICU, for which I’m still grateful; the PICU is a tough place to be, and Lily needed distractions. She doesn’t tolerate IV needles, and had a splint wrapped over her arm to prevent her from removing them. She was…not a happy camper, and we brought toys and music to cheer her up.
I know that Saturday I spent time at home, working over my general fears and my panic that using a cleaner had triggered the seizure. (It took me years to absolve myself of responsibility.) Our friends still came to visit, so there must have been more cleaning and cooking and entertaining.
That Sunday was my sixteeth birthday, and the day that Lily was released. I’m still ashamed to this day of how bitterly jealous I was of her special treatment and her taking attention from me, even in the midst of my overwhelming relief to see her home safe. My mother had promised to bake me a cake, as always, but couldn’t while she was in the hospital with Lily, so our friends helped me bake and decorate a cake. And – this will sound silly – my parents gave Lily a bowl of my birthday cereal. We weren’t normally allowed to have sugary cereal, but we could pick anything we wanted for our birthdays. What horrifies me now is how bad the cereal was, which I knew then, and yet how irritated I felt that she was given any of it. None of this matters in the scheme of things, of course – I was surrounded by family and friends, was given gifts and was celebrated. But it was still hard on my young ego.
It turned out to be a rough year for the kid and for us all. Lily was back in the hospital days later, released in time for a July 4th dinner at home. The car I was allowed to drive had to stay wherever Lily was, so I got behind on driving practice and didn’t earn my license for months. (To be fair, I wasn’t eager to drive, but I managed to resent “her” interference nonetheless.) My dad and I went to the movies, which left my mom to handle seizures on her own. (During this phase, Lily had distinct pre-seizure auras that included her falling off of chairs if not caught.) We all spent a lot of time being careful. Happily, the seizures eventually became less frequent and intense, but that’s a whole set of other stories.
It’s been 13 years since that happened. Now, Lily has seizures daily, which are much smaller but much more diverse. (Sometimes it’s a moment of being spaced out with clenched teeth and sometimes it’s screaming in fear.) But she had a great birthday, and she’s definitely doing well transitioning into her assisted living program. Here’s to the next year being a great one for her!