Currently, we are all in the middle of being isolated from the world. It is a strange time for everyone. It is a difficult time for everyone. For us, it has been no different. I began distancing Aubrey on March 13, when I wouldn't let her attend a magic show at the high school. I knew what might be coming and I didn't want to put her at risk. That was on a Friday, school was cancelled on Sunday. Aubrey has basically been isolated since that point. My fears aren't that she will have severe respiratory issues (although that wouldn't be so far fetched), it is that she would spike a fever and that would cause serious issues with her epilepsy. Aubrey has multiple absence seizures all day, every day. Her last EEG showed that she has approx. 10 an hour, so we were working on changing her medications when social distancing. I was worried that she was too susceptible to a big (clonic-tonic) seizure and that I had to take this serious from day 1. So, for one month we played by the rules. For us this meant, Alexander's last day of daycare was the same as Aubrey's last day at school. The kids couldn't go into any stores anymore. Aubrey would do all of her therapies from home, even though she had the option to do them at the hospital. I was committing to online school with her, since she can't log into an account, complete work or navigate any part of Microsoft Teams, without direct assistance. I was committed to sitting in front of that computer 5-6 different times a day, as she scratched my arm, pulled my hair, begged to be done, and insisted on "I want pillow". I was cool with Alexander dumping baskets of blocks out in the floor in the middle of her lessons, demanding that he "go school", and redirecting him to his toy box in the other room. Cooking every meal at home and begging my professors for extensions because I literally cannot find the time in a day to write papers or complete projects. I was more okay than usual with the lack of sleep because Aubrey's sleep was worse than ever, either because of the new meds or the lack of activity - because, of course most of the past month has been cold in North Dakota. I was all in with social distancing. In the back on my mind I knew that I was so okay with all of this because I know what happened to Aubrey during the last global pandemic. It's the one that people like to use for comparative memes. In 2009 Aubrey fell victim to H1N1. The result was respiratory arrest, weeks in the hospital and a tracheotomy. I know what is like to see a baby in ICU and the idea that there may not be available ICU is nothing short of terrifying. All in. Period. I was doing all that I could to prevent COVID-19 from touching my daughter and possibly causing a big seizure.
Tuesday was a typical day for us. Aubrey completed two sessions with her paraprofessional, sat through speech, and worked in the living room via Skype with her physical therapist. Seth was on day shift and it was his last day. Those are always the best days, but even more so lately. We were eating dinner and Aubrey resisted sitting with us for more than 2 minutes, not unusual. She escaped to her tent in the living room, which is her new favorite hang out. Seth took her dinner to her and nothing was out of the ordinary. He made a loop around the table to grab his drink and then went back to her tent. She was seizing. Eyes rolled back, unconscious, muscle spasms, seizing. He called me over and I went into reaction mode. I grabbed my phone and called 911, while grabbing her emergency rescue medication. I ran back to her and held her head while talking to the 911 operator. Then it stopped. I cancelled the emergency response, Seth pulled her out of her tent and put her on the couch, I called my mom to come to be with Alexander and we took Aubrey to the ER. The seizure lasted for about 90 seconds. I wanted to have labs drawn immediately so that we knew if there was any obvious cause. The thing with Aubrey is that we don't know how she feels. I don't know if her head hurts, if she's seeing double, I don't know if she feels nauseous or if she had any indications leading up to the seizure. I just have to guess. I have to do everything possible and hope that some of it helps.
The days after her seizure have been tough. She was tired most of the day for two days afterward, but couldn't sleep for more than two hours at a time. I cancelled school sessions and let her rest. She finally felt better yesterday so I took her to the park to rider her PowerWheels. Today we went to the farm and she played on her swing and rode the Ranger. Her neurologist will have to wait on all of her labs results but the initial tests showed nothing striking. At this point, there is nothing different that we can or should have done, it was just a breakthrough seizure.
So, here's the thing, I have spent 30 days living in fear. Fear that someone would carry a novel virus to Divide County and wreak havoc on Aubrey. My fear was that her epilepsy was vulnerable, that she was vulnerable. After the image of her seizing was burned into my brain and we once again experienced a critical health scare, I overcame the focused fear of Coronavirus. Aubrey will always be more susceptible to viruses. She is always going to be higher risk for whatever is going around. While, of course, I wouldn't put her on a crowded New York subway car at the moment, I am going to let her go to therapy next week. It doesn't matter how committed I am to ensuring she completes her reading assignments, she still has epilepsy. Once the world returns to normal and her classmates return to regular birthday parties and not virtual ones, Aubrey will still be happy to eat supper in her tent, because she is still autistic. Just like everyone, I hope this soon passes, but even when it does, my worst fears will sometimes be a reality and if anything, I realize that is not something I can change. It doesn't change with online school or keeping my kids out of the grocery store. I could do everything, but it would not be enough.
