The Chronicles of Her Epliepsy: Don’t Try to Follow
Aubrey gets tired of talking about her health. She can’t stand the word epilepsy anymore, nor does she want to discuss her new, alternative lifestyle. Just this morning, I went upstairs to give her a.m. dosage of medication and tried to talk about needing her to understand that she is different; that she cannot take her health for granted, and until we get her epilepsy under control, I have to make sure she is protected and appropriately cared for.
She pulled the covers over her head to block out the conversation.
“Please, Aubrey, look at me, ” I said. “As much as you want to live like a normal teenager, at this point in time, you cannot. I want you to live like a normal teenager, too, I really do, and I wish to God that you didn’t have this issue. It may take awhile to get to the point where you can be as normal as everyone else. And as much as you think ‘I’m up your ass all the time,’ it’s because I love you so much, and as your mother, it’s my job to make sure you’re safe and healthy. And if anything ever happened to you, I would die.”
“Aubreyously,” she said.
That’s our way of saying “obviously” in our house. The term “Aubreyously” stemmed from her, being a teenager and all, always being right, and everything that I say is wrong. It’s a very fitting word.
I’ve had conversations where I have told the person I was talking to how thankful I am that both of my children were born perfectly healthy, particularly when I’ve seen a story on TV or social media about a child who was born with an illness such as cerebral palsy, cancer, heart problems or other tragic diseases. My heart aches every time I hear a story like that, and how gut wrenching it must be for their parents who are forced to deal with the fact they cannot make their child’s problems disappear.
When I was between the ages of four and seven before my parents divorced, we lived on a dead-end, red-brick street. Our neighborhood was full of kids, and during the warm evenings, we would all be outside playing baseball, riding our bikes, playing ghost in the graveyard, hide-and-seek or running through the sprinkler. My sister, Leon, Freddie, Becca, Shannon, the “hillbilly kids” as they were known as, Jimmy, Johnny and I were always hanging out together. Sometimes we would go to the Miller’s house–Grandma and Grandpa Miller, as we all called them. They would roast marshmallows for all of us kids in their fire pit in their backyard. Plus, they had a really cool swing that when I was lucky enough to sit in it, I thought I was the coolest kid on that block.
Johnny, though, was a kid that I hung around quite a bit. We’d play with his He-Man dolls and Castle of Grayskull, watch the Snorks or Smurfs, and eat popcorn in the afternoons. Sometimes he couldn’t come outside to play or his mom, Carol, wouldn’t let me inside because Johnny wasn’t feeling well. I never knew why, though, nor did I ever ask.
We moved from that neighborhood after my parents divorced. A couple of years later, I rode my bike back to my old stomping ground in hopes to see if Johnny could come outside to play with me. It had been awhile, but I was positive he would remember me. I walked up the stairs, rang the doorbell, and within 30 seconds his mom came to the door. I reintroduced myself, just in case she didn’t remember me. Surely she wouldn’t forget the girl that didn’t wear socks with her tennis shoes, always had scuffed up knees and grass-stained jeans, and always played with her son.
“Can Johnny come outside and play?” I asked.
She shut the door.
I shrugged my shoulders, remembered I had never really liked her anyway, and went across the street to the Miller’s house. At least they were happy to see me. I told them that I had come by to see Johnny, but his mom was being mean and shut the door in my face. That’s when I learned why Johnny was always sick, why his hair was always so messy and sparse, and although he was about five years older than me, why he was never much bigger than I was. He had been battling leukemia for several years, and eventually lost his battle to the cancer sometime between the day I moved away from the neighborhood and that day.
It then made sense to me as to why his mom had just shut the door on me. I had unknowingly upset her. To this day, I feel some guilt for knocking on that dirty, white door asking for Johnny to come outside and play.
The thought of Johnny has crossed my mind many times over the last 30-something years. When I became a mother myself, I realized the pain and agony that his mother must’ve gone through—fighting his cancer; dealing with the chemotherapy and sickness that went along with it; praying in bed alone for her son’s health to get better and praying for the time that Johnny could one day get married and have children of his own. I can’t imagine what she must’ve gone through, only to lose him in the end.
Or can I?
Epilepsy isn’t life-threatening per se, but most deaths associated with epilepsy are caused by the actual fall itself when a tonic-clonic seizure occurs. Oftentimes, the epileptic falls down the stairs or falls into sharp edges and so on, that cause significant bodily harm and even death. I try to tell myself that seizures are mostly harmless, and there are far worse diseases out there that could accompany my daughter instead, but epilepsy is no joke, and quite frankly, witnessing my child having a tonic-clonic seizure are the scariest encounters I’ve ever had with a health-related issue.
This past Tuesday was just about like any other Tuesday—quiet and uneventful, until I had come home from work around 8:30 that evening. I walk in the house, welcomed as I am every evening by my son, Abbott, and went right upstairs to make sure that Aubrey had taken her medicine for that evening.
“Yes, mom, I took it about 15 minutes ago, around 8:20,” she said.
I felt pretty confident at this point with her epilepsy getting under control because the day before we had went to the Children’s Epilepsy Center of Emory Hospital in Atlanta and met with two different epileptologists—neurologists that specialize in epilepsy; and both doctors convinced me that Aubrey’s brain disorder would be controlled with the proper medications, although it may take some time to get it regulated. I was so pleased with their care and knowledge that increasing her medication that evening pleased me, and in no way did I feel any threat of a possible seizure occurrence at that point.
About 10:00 that evening, Aubrey walked downstairs to the bathroom to clean her face and brush her teeth before she went to bed. Of course, I get on her right away about going to sleep because according to her doctors, sleep deprivation and stress can lead to more seizures. After she completed her nightly routine, she came into the living room where I was sitting and we began to have a conversation about the cats and kittens—nothing stressful—basically just a conversation that would give her a few minutes before I would force her back in her room to go to sleep.
Aubrey was lying on her belly petting Kaci, our cat, in front of the television and I was sitting on the couch when I heard a loud single moan. I’ve learned that one of the first parts of the body to seize is your vocal chords, and if you hear someone who is epileptic let out a yell or moan, they are about to go into a full generalized, or tonic-clonic, seizure.
I flew off the couch, and over to where she was lying in less than a half a second. You would’ve thought I had springs on my feet as swiftly as I reached her. Honestly, I’m not sure my feet even touched the floor—I think I just flew over to her. My heart instantly began to pound outside of my chest; nausea sets in, and the words, “Oh, my god, Aubrey?” is recalled. Just writing this now and having those visions again are causing my heart to beat a little faster.
If you’ve never seen someone have an intense seizure, it’s important to know to handle the situation. I can’t tell anyone to not be afraid, because it’s very scary, and no matter how many times you’ve seen one, each seizure is a different scenario and each seizure looks and feels differently. Regardless, if you see someone having a seizure, don’t ignore it. They need your help. I say this very intently because when Aubrey had a seizure in the T-Mobile Store, before a patron walked inside who happened to be an RN in the middle of her seizure, everyone else had ignored my daughter who was lying on her back, on the cold, hard floor, shaking back and forth. Although my husband was there, that was his first encounter with a seizure, so he was also very scared, and was doing what he thought he should, which was to protect her. Everyone, including the employees, just stood on the side looking at her, covering their mouths in awe, and not one person offered their help or to even call an ambulance. My husband had to stop what he was doing to call 911 because no one else offered their help, and that upsets me even still.
I’m not sure if it was because Aubrey was lying on her belly when the seizure began, but when I got to her, the seizure was so strong that it had literally lifted her off the floor and onto the tips of her elbows and kneecaps only. Her back was arched; arms curled up towards her face, and legs pulled upwards like she was doing some sort of leg lift. Her head was jerking, and the sound of gurgling came from the back of her throat. Her eyes were open, and appeared as if she was looking up at the ceiling. Blood spots were dripping on the carpet from her biting her tongue.
I rolled her onto her side, which was very difficult because a seizure is so strong that you think you are dealing with body builder. Calmly speaking, the amount of strength that comes from too many of the brain’s neurons combining at once is amazing. In a nutshell, seizures occur when neurons that translate to thought, speech, sensation or movement all fire at the same time.
After I rolled her onto her side, I realized I couldn’t reach a pillow to place under her head to keep from any head injury taking place, so I put my arm under her head for protection. At the time I didn’t realize the pain, but later discovered my arm felt bruised from the pounding of her head against it.
I yelled for Abbott twice—he was in bed—and after only 10 or 15 seconds, he ran out of his room and into the living room. Abbott and I have gone over the drills of taking care of Aubrey if she has a seizure, so he was familiar with the routine.
“10:22!” Abbott yelled.
He knew to immediately look at the clock because it’s critical the seizure is timed. He then ran into the kitchen and grabbed her Diastat, which is used as emergency if a seizure lasts five minutes. Diastat is essentially liquid Valium and is administered rectally during a seizure that hasn’t subsided. Because this epilepsy is still new to our family, I get scared and always call 911. I would rather the medics get here, even if the seizure is over by the time they reach our location, to at least check her vitals and be close to her if another seizure begins. I told Abbott to grab my phone and dial 911, and he did.
I rubbed Aubrey’s back and shoulders to let her know I was by her side. I told her I was there, although I know she couldn’t hear me, and told her that help was on the way. My heart was pounding, and tears were filling my eyes. At that moment, I was pissed that my daughter has to go through the bullshit of epilepsy. Her arms were stiff, and her legs were still in the form as they were before I rolled her over to her side. Saliva was slowly running out of her mouth, and it looked bubbly and thick. The color of her skin was beginning to turn colors, almost a grayish hue, as if she wasn’t getting enough oxygen to her brain. I’ve seen the color before—it happens almost every time she has an episode.
After approximately two and a half minutes, the seizure was beginning to slow down. Her head wasn’t jerking as often, and the stiffening of her body was beginning to relax. Thank God, it’s over.
Or so I thought.
About five seconds or so after the seizure had appeared to be stopping, another one began. That’s when I got real scared.
“Abbott, oh, my, god, please go and get help! Go get Susan!” and for the door he headed. “No, Abbott, please don’t leave me. Stay here with me.” So he came back and knelt down beside Aubrey, and began to rub her back.
I could hear the ambulance.
She had never had two seizures back to back before, and for another minute or so, the full-force seizure carried on. I was begging that the ambulance hurry. I was begging God for the seizure to stop. “What the hell,” I was thinking, “She took her medicine! What is going on?!”
Finally, the second seizure stopped, and I just sat there looking into my unconscious daughter’s bloodshot eyes—how could eyes so beautiful look so stressed—and I waited for her to take a breath. One-two-three-four-five-six-seven…please…take…a…breath. For a brief second, I thought she was dead. I hate to even say that word, but it’s true. The way she looked, and she hadn’t yet taken a breath—yes, I thought she was dead. I cannot describe the instantaneous feeling of emptiness inside of me, and I want to cry just thinking about that feeling. I’ve never felt such emptiness—ever.
She then inhaled a deep, loud breath—one I’ve never been so thankful for—and then exhaled ever so slowly. Her eyes and mouth remained open for another second and then closed, but I began counting her breaths, and placed my hand on her chest to assure myself that it was going up and down.
The 911 medics arrived and entered the house. Aubrey was still on the floor unconscious. Two of the medics knelt down to where she was laying, and carefully tried to wake her up. Her eyes popped open, confused and exhausted, and they informed her they were going to pick her up to place her on the gurney. They took her vitals, and lifted her off the ground. After several minutes, they placed her in the back of the ambulance, and my neighbor came to get Abbott.
“If you see the lights of the ambulance come on, don’t try to follow,” says one of the medics to me.
“Does that mean that something is happening with her?” I asked, and the answer was yes.
Yeah, right…don’t follow, my ass. I will be right there trailing that ambulance, whether you are going 65 or 110 mph, Mr. Medic. In case you didn’t notice, my life is in the back of that ambulance.
The drive to the hospital was intense. For 35 minutes, I waited for those lights to come on. I cried the entire way there, thinking about everything from Aubrey going into another seizure to trying to figure out what caused her to start having seizures to begin with. I’ve found that when you’re in a desperate situation, your mind wanders and thinks about things that you never want to cross your mind at all. Some of those thoughts I couldn’t dare write down—I’d be afraid of jinxing myself. Let’s just say that I’m sure some of my thoughts could compare to those of Johnny’s mom’s thoughts.
I pray that Carol has found peace in Johnny’s death, and I hope that she knows that Johnny, although he has not been here since the 80s, did impact a life and left wonderful memories, although his time here on earth was short. My story, though, still exists, where hers had ended, and for that I will forever consider myself blessed. Aubrey has been okay for the last few days now, and to be quite honest, acting like a teenager again, thank goodness–Aubreyously.