Porter had a seizure on Christmas Eve. It was a bad grand mal in the middle of the night – the kind that lands him in the ICU when it doesn’t stop on its own. He jerked and twitched, then slept. The only thing you can do in these moments is to keep him safe by rolling him on his side and clearing things out of the way of his arms and legs.
Ramona brought him back to his room to rest after the seizure subsided. His bed has special bumpers and is close to the floor – it’s been that way since the time he flung himself out mid-seizure and bruised the side of his face. Soft, padded rugs cover the hard floor like the rubbery mats beneath playground equipment. His room is rigged with a monitor and a camera so Ramona knows his every move. After the seizure ran its course, Porter was wide awake and talking, but not conversationally. He sounded more like a scratched record, repeating himself over and over.
Ramona recounted this story to me in the morning when I arrived at her house to pick him up for Christmas. She greeted me at the door with a huge plate of homemade cookies and told me about their night. Hours after the seizure, Porter kept talking. This was long after Ramona sat with him and stroked his head; it was long past a comforting song and the time she spent scrunched next to him in the twin bed, trying to coax him to sleep. Yet at 1 a.m., Porter was still going strong. Seizures make him perseverate more than normal—which is to say nonstop.
“I went into his room and said, ‘You need to be quiet!’ Then I returned to the kitchen to finish the Christmas cookies,” Mona said. She is one of those nocturnal animals, at her best at two in the morning. I learned this during our trips to the hospital together, the times when the seizure doesn’t stop and is taken by ambulance to the ICU. We take shifts at his bedside – I take the early morning and she has the night time. We take turns refilling Styrofoam coffee cups, sitting in silence and waiting. Our life falls into chapters: we hover until he falls asleep, or until he finally wakes up.
This Christmas Eve morning, Ramona declared her intervention the night before unsuccessful. “I was back in the kitchen and I heard him over the monitor saying, ‘You need to be quiet! You need to be quiet! You need to be quiet.’ After the hundredth time I went up to tell him to stop and to get some rest. I walked in his room and he greeted me like he hadn’t seen me in a month. He flapped and said, ‘You need to be quiet Mommy!’
“I told him, ‘Porter, you need to stop talking, it’s time to sleep.’ I went back to the kitchen satisfied with myself and it was quiet. A minute later I heard through the monitor, ‘Shhhh.’”
So he spent much of the night awake. You know where this is going. We got him to the house for our Christmas celebration and he curled up on the couch, pulled a blanket around his legs and went to sleep. I stopped in my tracks. This wasn’t the way it was supposed to be. In a sing-song voice, I announced, “Time to wake up, we are opening presents!”
Silence. This was going to be tough. I began rolling out the shoulds.
“Everyone should sit up!” I said. The other kids looked baffled, because they were. “We are sitting, Mom,” Jack said.
I looked across the family. The tree lights flickered and Christmas music played in the background. The room smelled like apple coffee cake. Samantha was smiling, Jackson was eating, Ben wrestled with Riley and Tyler was holding hands with her boyfriend Cleshawn. Porter slept quietly. It was a peaceful scene.
It had to change. Porter should be awake to join us. That’s what I thought, and it made me antsy. There were several problems: 1) It was not reality; 2) Porter did not want to wake up; 3) I have the wrong personality for throwing my weight around. Despite all the factors against me, I kept on. Fighting reality is one of my not-so-special traits. Luckily, having a child with disabilities always sets me straight.
I was reminded of all the times I’d ignored the unfolding events and wasted energy trying to assert control over life as it happened. I was powerless to change it, but that didn’t stop me. The map I had in my mind was filled with family vacations, recitals and proms. The terrain we had in fact traveled looked more like a hospital. Still, I clung to the map. Each time he had a seizure I gripped it tighter. If it didn’t work I doubled my efforts. When he repeated kindergarten (how can you repeat kindergarten?), I studied it again and tried to force things to be different. I believed the terrain was the problem. I never questioned the map.
At some point my son, the teacher, showed me a different lesson: When I’m struggling with reality it is always a good move to drop the map. I took a deep breath and surveyed the room. Music still played, the tree twinkled and the children laughed. This was our Christmas and Porter was there with us.
He slept through every minute of it.
To read more from Sarah Bridges, please buy her memoir “A Bad Reaction” (Skyhorse Publishing) available on Amazon.com. For more “Free Range Lives” messages, click and subscribe to the blog. We appreciate your support and your “shares” as we create a community of support and hope.