“Good luck to you, and I hope to never see you again,” my son’s neurologist joked as he shook his hand and ushered us out of the exam room in his small corner of Mott’s Children’s Hospital. I was quiet as we made our way through the maze of hallways to the elevator, and tried to erase from my mind the things I’d seen when I arrived that day and accidentally took the wrong elevator, winding up in the cancer wing. We were in a building full of sick children, many of them sicker than my son, who, hopefully, was no longer sick at all. He looked healthy and strong as he joked around with his father and brother on the way to the parking ramp. Maybe he was. Taking him off his medication was the only way we would find out if his seizures were gone, or were still just being managed by medication.
I put on a smile when we stopped for lunch in the small college town the hospital is located in, even though my “world-famous” sandwich tasted like rubber. It wasn’t until I was back in my car, alone for the long drive home, that the tears began to flow. I wanted to be optimistic like my son and his father and the pediatric neurologist we’d been seeing for the past six years. I wanted to believe that my son’s epilepsy was gone, vanished as inexplicably as it had appeared in February 2009, just three days after his tenth birthday. We’d spent more than half a decade with a ticking time bomb hovering over our happy life- when will he have another seizure? Where will it happen? Will they be able to stop it this time? I was ready for it to be over.
But I was also scared, because I’d heard those words from my son’s doctor before. “I hope to never see you again.” When my son was twelve, after he’d been on anti-seizure medication for a good two and a half years, his doctor suggested we try to take him off of it, to see if the seizures had gone away. “Many children grow out of seizure disorders,” he told us. If my son went six months seizure and medication free, there was a 75% chance he’d never have another seizure in his life. Those sounded like good odds to me. At the time, I was still trying to wrap my head around the fact that my son even had epilepsy (and was quite possibly in a state of denial.) On that day, I was excited. I was optimistic.
As the months passed and Austin’s seizures didn’t return, I went so far as to declare that he’d conquered his demon. We won. Except we didn’t. Four months after he stopped taking his medication, in December 2011, his seizures returned. He was placed back on his medication, and after a whole lot of tears, I accepted the fact that his epilepsy wasn’t going away. We would always have to worry, and always have to be cautious, but I still considered him lucky because we’d been able to find a medication that effectively controlled his seizures with little to no side effects. So I was terrified when, two years later, Austin’s neurologist suggested that we “try again” to wean him off his meds. Try again? My kid’s life is not some science experiment. But Austin wanted to try. And his father wanted him to try. And his neurologist assured us that the odds were just as good as they were the first time that he’d never have another seizure. That sounded ridiculous to me, but I reluctantly agreed to try again.
It was late spring 2014, and I was a bundle of nerves as we started to wean Austin off of his anti-seizure medication once more. A couple of weeks into the process, he started suffering from debilitating headaches. I was sure this was a sign that the seizures were going to return. Austin’s doctor suggested we just slow down the process a bit. A few weeks after that, Austin began having minor episodes that sounded very much like complex partial seizures (or absence seizures or petit mal seizures or whatever you want to call them.) His doctor instructed us to bump him back up to his full dosage, so we did. And for the next year, things were calm.
Our most recent appointment with the Peds Neurology Clinic at Mott’s Children’s Hospital was just this past May, a mere four months ago. Austin and his father were convinced that it was time for Austin to come off his medication again. I was dead set against it. At some point over the past five years, I’d resigned myself to my son’s fate. He had epilepsy and he always would. He took a low dose of an anti-seizure medication that caused no side effects. He would have to live his life a little bit differently than others, but he was very fortunate considering the hand he’d been dealt. Why not leave well enough alone? Why go messing with things that weren’t broken? I didn’t understand it, and I voiced my concern and apprehension. But as my son, his father, and the neurologist sat across from me, it was three against one. I was outnumbered, my valid concerns written off as the paranoid fears of an overprotective mother. It was time to start the process once more, the one that had caused us nothing but complications in the past.
I wanted to be wrong. The entire drive home, I hoped they were right. “Please let his seizures be gone,” I prayed. “And if they’re not, please keep him safe during his next seizure. Please let it happen at home, in his bed, the way it did last time. Let him come out of it with no permanent damage. And then let this ridiculous game of Russian Roulette with my son’s life be over.” You see, my son’s doctor did say one promising thing during the appointment- that if Austin relapsed again, he would go back on his medication and we would talk about lifetime seizure management, and there would be no more attempts to stop his treatment.
The morning of September 28, 2015, I was awoken by the sound of my son’s bed creaking, as his bedroom is directly above mine. And then what sounded like him slamming things around. And then more creaking. I almost didn’t get out of bed. But I did. I went to the bottom of the stairs and opened the door and heard nothing. So I almost didn’t go upstairs. I almost let my husband go instead, and I’m confident that if he had, he wouldn’t have seen what I saw. When I reached my son’s bedroom, I found him lying on his side, his eyes closed. Asleep. I almost turned around and walked away. I almost didn’t turn on his light. But something stopped me. It was his breathing- labored and louder than it should have been. I flipped on his light, knowing in the pit of my stomach what I would find. His eyes weren’t closed, rather partially open and rolled back into his head. His face was purple and streaked with blood from where he bit his tongue. He wasn’t asleep, he was unconscious. I allowed myself one split second of panic before I went into emergency mode.
Call 911. Administer his emergency medication. Call his dad and his grandma. (Be thankful that you’re not having to do all of this by yourself like you have in the past.) Get dressed. (A bra, I need a bra! And pants!) At some point during the commotion, my younger son woke up, and I saw that look on his face that I’ve seen too many times before- that terrified, heartbroken look that he only gets when his brother is having a seizure. We’ve both been through it with him before, but it never gets any easier. Just more familiar.
As I waited for my son to come to, I thought about all the things that somehow went right in this wrongest of moments. He was at home, with me. Usually on Mondays, he’s with his dad. He was in his bed, not at school or- God forbid- driving. He would be okay. Hopefully. Maybe.
I’d been mentally preparing for this moment for months. I spent countless hours worrying about how and when his next seizure would happen, but there was one thing I didn’t give much thought to at all- my son’s not a little boy anymore. He has the size and strength of a man. And as he began to come out of his seizure, he overpowered me quickly. First, he grabbed my finger and squeezed and bent it so far back, I was afraid he might break it. Then, he went into full blown panic mode. He wasn’t entirely conscious yet, but he was awake enough to know that something was wrong. He told me over and over that he was scared, and as he grabbed at my arms and hands, I knew that if he got a hold of me, I wouldn’t be able to get away from him. What a terrifying realization- that my son had no more control over his body than I did. He was a danger to himself and to me. That’s something we’ve never dealt with before, something I’d never even considered.
Austin’s first conscious memory of that morning is being loaded into the ambulance. I sat beside him and held his hand as we raced toward the hospital. By the time we got there, he was out of the woods. Mostly. It will take a couple of weeks for his cognitive function to fully return to normal. Due to the violence of his seizure, he dislocated some ribs and has spent the past three days in excruciating pain. But he’ll be okay. He’s back on his medication now, and likely will be for the rest of his life. He will need to find a way to accept the fact that his epilepsy is not going away, and he’ll need to start managing his own care, as he’s almost an adult now. His brain gets a little less fuzzy every day. The trauma of his seizure is getting further away from us, little by little, and we’re all starting to heal, emotionally and otherwise.
It would be easy to wallow in despair. Why does this keep happening to my son? Why was he burdened with this terrible disorder? It’s not fair. It’s not, but you know what? I did my wallowing years ago. I’ve been in the acceptance stage for quite some time, I just needed my son and his doctor to join me. We’re all here together now. (I hope.) So while I may have a moment of self-pity here or there as we wade through these treacherous next few weeks until he’s out of the danger zone, I’ll focus on all of the things that went right- where it happened, when it happened, and that the damage it caused will not be long-lasting. Still, it was hard not to feel a bit defeated when speaking to his neurologist about his next appointment. “Okay,” he said just before we hung up, “we’ll see you again soon.”