February 14, 2009 began as a lazy Saturday in our house. Sure, it was Valentine’s Day, but I’ve never been a big fan of Hallmark holidays, so it was just like any other day for us. Austin had just celebrated his tenth birthday three days prior. Ethan was six. They’d spent the night at their grandparents’ the night before, and Austin came home feeling a little under the weather.
He was complaining of what I assumed at the time were waves of intense nausea. He said that every now and then, everything would get “very far away” and he would feel like he was going to vomit, and his hands “felt soft.” I wasn’t quite sure what that even meant, but I chalked his symptoms up to a virus going around that caused severe vertigo. My boss’ daughter had just missed a full week of school because of it.
Around noon, Austin began complaining of a headache. I gave him some Children’s Motrin and cuddled with him on the couch for a bit. When he still wasn’t feeling better about a half hour later, I suggested he take a nap. Much to my surprise, he agreed.
Wanting to be close in case he needed me, I headed upstairs to do laundry while he napped across the hall. Ethan, who was dressed in his Halloween costume (a robo-soldier) and his winter boots, was playing quietly in his room.
After about twenty minutes, Austin came wandering into my room, a confused look on his face. His eyes were wide and glassy. I attributed it to him being half asleep.
“Hi,” I greeted him.
“Hiiii,” he answered in a weird, sing-songy voice.
“What are you doing?” I asked.
“My butt is hot,” he responded. What?
“Your butt is hot?” I laughed, wanting to make sure I heard him right. He didn’t answer me. Instead, he sauntered over to me, very wobbly, and then began looking at his hands and rubbing them together. I assumed it was because they were feeling “soft” again, which, in my mind, meant that they were tingly, or asleep. He then started smacking his lips and making a very strange face, almost like he tasted something sour. Worried he was nauseous and about to vomit, I corralled him into the bathroom and sat him down on a stool, his head over the toilet. He was completely out of it. I figured he was still half sleeping, maybe feverish (even though he didn’t feel hot to me), and a little out of sorts. After about a minute or so, he took a deep breath and sat straight up.
“I’m okay,” he announced, sounding confused.
“Are you sure?” I asked. He nodded, standing up clumsily. I helped him back into his bed, took his temperature to confirm that he did not, in fact, have a fever, placed a puke bucket next to his bed, and watched him quickly fall back to sleep. I checked on Ethan, who was still playing quietly with action figures, then returned to my cleaning.
About a half hour later, I decided it was time to nix the cleaning for the day, take a shower (it was almost 4:00 in the afternoon, after all), and figure out what we were going to do for dinner. On my way into the bathroom, I stopped in Austin’s room to make sure he was still sleeping. What happened next, I will never, ever forget, no matter how hard I try.
I found Austin sitting up in his bed, the most unsettling look on his face. He was staring at the wall, but it appeared more as if he was looking through it than at it. I called his name, but he didn’t answer me. I approached him, settling myself on my knees so that we were face to face.
“Austin,” I almost yelled. He slowly shifted his focus from the wall to my face, but again seemed to be staring right through me. His eyes were empty and cold. His face was blank. I never really understood what that expression meant until that moment. There was no emotion, no sign of life, no nothing. It was terrifying. “Austin,” I whispered, trying to keep my voice from shaking. Inside, I was panicking. But I knew something was very, very wrong with my child and I had to help him through it. I could not let him see my fear. “Austin, can you say something?”
He watched me, his chin trembling, almost as if he were trying to say something, but couldn’t. Every few seconds, there would be a flicker of emotion in his face, and I could see that somewhere inside, he knew something was horribly wrong. I could see that he was afraid.
I asked him to tell me my name, and was met with more blank staring interrupted by brief moments of panic, but no words. I asked him if he could point his finger at me. At first he didn’t move, so I pointed my finger at him as an example. “Like this,” I begged. “Can you point your finger at me like this?” He slowly reached his hand up to mine and grabbed my finger. I fought the urge to burst into tears. “No, Austin,” I said. Point YOUR finger at ME. He watched me, confused, and then lifted his hand up to his face and began licking his fingers.
What I felt in that moment, I don’t quite know how to explain. I could hear myself screaming inside my head, but outwardly, I was silent. It felt as if all of my blood, which was ice cold, was being drained from my body. My heart was physically breaking. They say having something tragic happen to a child is a parent’s worst nightmare, but it isn’t. It’s so, so much worse than a nightmare. It’s an unfathomable pain, unlike anything else on earth.
We sat there for a moment, my ten year old son licking his fingers and unable to remember my name, and me hoping and praying to wake up from the world’s worst dream. What the hell was wrong with my baby? And more importantly, how could I make it stop?
By that time, Ethan was in the room with us, watching intently. He knew something was wrong. I somehow found the strength to stand. I kissed Austin on the forehead and told him I would be right back. I took Ethan out into the hallway with me and told him to get himself dressed, that it was very important for him to be a big boy and get himself ready without my help, because I had a lot to do. I went into my room, where my cell phone was charging, and dialed 911.
“Eaton County Dispatch.” The words were sharp, and so incredibly painful. This was really happening.
“There’s something wrong with my son,” I told the operator, my voice wavering only slightly. As I explained to her how he was unable to follow simple commands and was saying and doing things that made no sense, I remembered something. I’d seen an episode of Grey’s Anatomy once where a woman took her son to the hospital because he was doing and saying things that made absolutely no sense, much like what Austin was doing. She thought he was crazy. The doctors said he was suffering from seizures. Although it would be several hours before my fear would be confirmed, and much longer before I’d be able to accept it, a part of me knew.
The 911 operator told me help was on the way, and offered to stay on the line with me. I told her I would be fine, although nothing was further from the truth. But I had things to do. And I only had until the ambulance arrived to get them done. I was still in my pajamas. I hadn’t showered. I hadn’t even brushed my teeth. I had to get Ethan ready. I had to call the boys’ dad. I had to call my mom. And I had to keep an eye on Austin.
I managed to throw my greasy, unwashed hair into a ponytail and brush my teeth within about thirty seconds. I made sure Ethan had gotten himself dressed properly and wasn’t missing anything essential like socks or underwear.
I could hear the sirens in the distance as I called my ex-husband, who was at work, and told him that something was wrong with Austin, an ambulance was on its way, and he needed to meet us at the hospital. He wanted details. I didn’t have time to give them. I called my mom, and had much the same conversation with her.
I was carrying Austin, who was still completely unresponsive, down the stairs to the living room when the ambulance pulled into our parking lot. Halfway down the steps, he seemed to wake up.
“I’m okay, it’s okay,” he said. I set him down carefully on the couch. The EMTs were at the door. I kissed him on the head.
“Can you tell me my name?” I asked. Austin, who was looking much more like “Austin” now, looked at me.
“Umm….umm…umm….oh, Jennifer!” he said. I smiled and went to the door to let the paramedics in. Austin watched in confusion as I explained to them what had happened to him. He didn’t remember any of it. While they were asking him questions and taking his vitals, I helped Ethan with his shoes and coat, and got myself ready to go.
Austin’s eyes widened when they brought in the stretcher. They loaded him up, strapped him down, and wheeled him out to the ambulance.
“We’ll go slow enough so that you can follow behind us,” one of the paramedics told me.
“Follow you?” I asked, confused. I was riding in the ambulance with my son, wasn’t I?
“He’s too young to ride in the cab with us,” the paramedic explained, motioning to Ethan. Before I could say another word, he hopped in the ambulance behind the stretcher and closed the door. I didn’t even get to tell my baby goodbye.
I followed closely behind the ambulance in silence. Ethan asked me a couple of times if his brother was going to be okay. I lied to him and promised that he would.
On a normal day, the drive from our place to the hospital takes about ten to fifteen minutes. But this drive seemed to take hours. I’m not sure I even so much parked in a parking space, but more threw my car in park and jumped out of it as soon as the ambulance came to a stop in the hospital parking ramp. Ethan and I were waiting when they opened the doors and brought Austin out. He was awake and alert, but holding a barf bag.
“Did he get sick?” I asked. The paramedic nodded, but didn’t make eye contact. I felt like he was keeping something from me. My mother was waiting for us at the entrance door and jogged in silence with Ethan and me to keep up with the stretcher as they navigated it down halls and through doors. By the time we reached the children’s ward, Austin was awake and completely alert- and so very scared. It was when the EMTs were checking him in at the desk that I first heard someone other than the doctor from Grey’s Anatomy who had taken up residence inside my head mention the word seizure.
“And you said he had another seizure on the way here?” the nurse at the desk asked the paramedic. He looked quickly in my direction to see if I was listening, and seemed upset that I’d heard what the nurse said.
The boys’ dad was waiting for us in a small room with brightly painted walls, some medical equipment, and a smaller, more comfortable looking bed than the one Austin had been wheeled in on. The paramedics quickly moved him from the stretcher to the bed and disappeared.
Our entire family and a slew of doctors and nurses were present as I recounted the events that led to me calling 911 in detail. But looking at Austin, who was completely back to normal, it sounded crazy. He was answering questions, smiling, laughing. He was fine. Maybe it was crazy. Maybe I was crazy. He had no fever. His heart rate was fine. His blood pressure was fine. They drew blood. They took a urine sample. They ordered a CT scan. They brought Austin snacks. My dad came up to the hospital to get Ethan. One of my biggest regrets from that day is that I wasn’t more comforting to my littlest boy. He had to be so worried and so afraid.
By the time they came and got Austin for his CT scan, we’d already been at the hospital for three hours. His father was convinced that he just had the flu, and I’d overreacted. I started to wonder if he was right. I wanted him to be right. The orderly left the three of us in a small alcove near the CT scan room while someone else was having a scan done. Austin was getting antsy and I was exhausted. All we wanted was to go home.
I was talking to Austin about what he wanted for dinner after we left the hospital when he started rubbing his hands together and smacking his lips like I’d seen him do earlier in the day.
“It’s happening again,” I said, feeling as if my legs might fall out from under me.
“What’s happening?” Austin’s dad asked, not understanding what was going on.
“Austin, what’s my name?” I asked.
“Basketball,” he answered.
“Get help,” I whimpered. Austin’s dad took off running down the hall, yelling for help. By the time he returned with a nurse, Austin’s body was convulsing. He had drool pouring out of his mouth. His skin was turning bluish-gray. “He’s choking!” I screamed. The nurse turned him on his side. There was lots of yelling and button pressing and intercom paging. They whisked us into a trauma room. There were so many doctors surrounding Austin, I couldn’t even see him. There was a nurse standing at the end of his hospital bed holding paddles. It was surreal. I couldn’t watch what was happening to my child. I walked out of the room. A nurse followed me.
“I can’t be in there,” I told him. “I’m sorry, I just can’t be in there.” He nodded, and led me to a chair at the end of the hall. I turned my back so that I couldn’t see into Austin’s room. The nurse took my pulse, then asked me if there was anyone there at the hospital that he could get for me. “My mom,” I told him.
He left and I sat in silence, watching the clock. I could hear my ex-husband’s wails echoing in the halls as doctors worked frantically on our son. Within minutes, my mom was by my side. She tried to comfort me, but she kept looking down the hall. I could tell she wanted to be with Austin. “You can go,” I told her. So she went.
I sat in that chair at the end of that hall for what felt like forever, my only company the nurse who came and took my pulse every few minutes. All I could think about was how it was ten years to the day since I’d brought my baby home from the hospital, and now I was going to have to give him back. Ten years. Was that really all the time that had been written in the cards for me to have with my perfect, beautiful little boy?
I know everyone thinks their own child is the best and the cutest and the most talented, but Austin really was just absolutely perfect- the most gorgeous, sweetest little boy I’d ever met. He was both the teacher’s pet and the most popular boy in his class. He got straight A’s and was a state champion wrestler with an undefeated record and an all-star baseball player. He was strong. He was healthy. He was, well, perfect. And he was only ten years old. This couldn’t be happening to him. Not to my little boy.
I kept thinking about something my best friend’s mom told me several months after her daughter, my very first friend, was killed in a car accident. She said she’d just poured herself a glass of orange juice when she got the phone call from the hospital. She set the glass down to answer the phone, and was still, months later, waiting to take that drink of orange juice. For me, it was the game Clue. Austin had asked me to play it with him that morning. I told him I was too busy and we would play it later, foolishly thinking that we were just automatically guaranteed a “later.” He had to get better. He had to pull through this, whatever this was. He couldn’t leave me forever waiting to play that game of Clue with him.
After nearly a half hour, doctors were able to stop Austin’s seizure. I returned to his room, where they had a chair waiting for me next to his bed. He was heavily sedated. They said he would likely not wake up for a few days, during which time they would scan for tumors, do a spinal tap for meningitis, draw more blood. While the trauma doctor talked, I watched my baby boy sleep. He looked so peaceful, if you ignored all the tubes and monitors hooked to him, which I tried my best to do. He really was so beautiful. And he looked so little. I thought of him as so grown, so mature, but he was still just a baby. My baby.
Even before he was born, I had so many hopes and dreams for him. I had all kinds of plans for our life together, most of which hadn’t come to fruition yet. But as I sat in that hospital room, watching the rise and fall of his chest, I wanted just one thing. For him to wake up, even if only for a moment, so I could tell him I loved him one last time.
How had we gotten here? I’d started the day feeling sorry for myself for being alone on Valentine’s Day, and was ending it by trying to find a way to prepare myself to say goodbye to my little boy. This could not be happening. I was completely and utterly broken.
I closed my eyes as they did the spinal tap while Austin slept. I waited anxiously in the trauma room as they did the CT scan. I prayed so much and so hard that someone must have taken pity on me, because when they brought Austin back into the room, he was awake. I showered him with kisses and told him I loved him a zillion times. Hearing him say, “I love you too” remains one of the best moments of my life. You never know how vital to your own existence the sound of your child’s voice is until you’re faced with the possibility of never hearing it again.
They prepared a room for Austin in the pediatric intensive care unit. As luck would have it, my ex-husband’s entire family was in town for the weekend, and they were all waiting in the hall outside our ER trauma room. Austin had a full entourage with him on his trek from the ER to the Peds ICU. Before the ICU nurses even had him settled into his new room, the trauma doctor came bearing good news. No meningitis. No tumors. No cancer. No infection. Those were the four scariest options we were facing.
The plan was to monitor him through the night, then do more testing the next day. His room was so full of people, it was overwhelming. With Austin out of the woods and at maximum capacity for visitors, I decided to run home and take the shower that was now almost 24 hours overdue, and pack a bag for our next several days in the hospital. Austin agreed to let me go as long as I promised to bring back his blankie.
I reluctantly left the hospital and headed for home. It was after midnight and there were hardly any cars on the road, which was a good thing, because I didn’t realize until I pulled into my parking spot at home that I’d traveled that entire way with my headlights off. I took the fastest shower of my life, grabbed a couple changes of clothes, grabbed Austin some toys and books and his blankie, and a change of clothes to leave the hospital in. I called a couple of friends on my way back to the hospital to update them on what was going on. In less than an hour, I was back at Austin’s bedside, which was pretty impressive considering that the commute alone took nearly 40 minutes.
By the time I returned, all of Austin’s visitors had left except his dad and my mom. He was asleep. I put his blankie in his bed with him and pulled a chair up next to his bed. My mom left for the night, and his dad left to go shower and change out of his work clothes. For a long while, it was just the two of us. He slept a lot, only waking up every once in a while. I, on the other hand, was wide awake. I wasn’t going to miss one single second with my little boy.
At one point, he woke up and asked me to turn on music for him. I played him the few songs I had downloaded to my phone over and over. He asked me to lie with him, which was not an easy thing to do in a pediatric hospital bed, but I did my best. As we cuddled, listening to music, I stroked his hair and kissed his forehead.
Around 5 am, just as I was finally starting to doze off, Austin, who was apparently wide awake, said, “Mommy? I don’t want to die.” I promised him that he would most definitely not be dying anytime soon. My answer seemed to satisfy him, because he fell back to sleep and slept soundly for another three hours. I, on the other hand, finally broke down and cried for the first time that day.
We were in the Pediatric Intensive Care Unit for three days. That place is its own world, and one that I did not want to be a part of. It’s a depressing, heartbreaking place to be. The families there are going through the most unimaginable tragedies. I kept to myself, because I couldn’t deal with the awfulness that surrounded me. I wish I’d been stronger, that I’d been able to reach out and be a comfort to other parents in need, those whose children were in much worse shape than mine. I just couldn’t. That’s another of my great regrets from that time.
Austin underwent test after test, and saw specialist after specialist. On day three, he was finally diagnosed with epilepsy, which essentially meant that the doctors could not find any explanation as to why he was having seizures. That’s all epilepsy is- someone who has seizures for absolutely no reason whatsoever. Did you know that? I didn’t. I thought epilepsy was a visible disability, something you could see by looking at someone. I thought it was something you were born with, or something only really sick people got.
I didn’t know it could strike anyone at any time, even a strong, healthy, perfect little boy like mine. But it did. Austin’s one of the “lucky ones” in the epilepsy world, as his seizures are controlled with medication. We have had some bumps in the road along the way, however. Austin’s first medication was not a good fit for him, and he began suffering from break-through seizures about six months after he was diagnosed. When he was twelve, he reached an important milestone- two years seizure free. His neurologist decided to wean him off of his medication to see if the seizures would return. After about four months, they did.
Twice since that awful February day in 2009, Austin has been rushed to the hospital by ambulance after having a grand mal seizure. The first time, his face was partially paralyzed for a good three hours following the seizure. The second time, all of the blood vessels in his face and neck burst, and he was covered with prickly bruises for about a week. Seizures are scary and violent and harmful to not only one’s brain, but one’s body. Austin’s medication has some major side effects, the most difficult being that it slows down his brain, which slows down his thought processes, comprehension, and reflexes. And we live our lives with the constant threat of seizures hanging over our heads, knowing that one could come at anytime, without warning.
But Austin’s a fighter. He’s still an all-star baseball player, an A and B student, and a wonderful kid. He has to work a little harder than others to do well in school and at sports now, but his struggles have only made him a stronger person. To look at him, you’d never know he has epilepsy. But he does. As do 300,000 other children in America. Does someone you know have epilepsy? I bet you might be surprised. Would you know what to do if you witnessed someone having a seizure? Visit the Epilepsy Foundation’s website for more information. Because epilepsy is more common than you think.
November is Epilepsy Awareness Month. So be aware, please. For my family, and for the hundreds of thousands others like us.