Carei Ann arrived into the world letting the nurses know she was a force to be reckoned with. She was perfect in every way at 7 lbs. 11 oz., with a fuzz of strawberry blond hair. Every pediatrician visit would yield the same report that she was developmentally on target.
Carei’s school called me when she was 14. They informed me that she had passed out. An ambulance was called, but by the time they arrived, she was alert and responsive. They gave her some orange juice, and she insisted on returning to class. I acquiesced to my strong-willed child. I was concerned, yet proud of her coping skills. I set an appointment to look into the possibility of low blood sugar.
We encountered many doctor visits and a battery of diagnostic tests following the incident. A referral to a neurologist was made with more tests, sleep labs, EEG’s, CAT scans before a diagnosis of epilepsy was finally made.
They described the type of epilepsy as idiopathic, defined as an unknown cause. Our job was to move forward through a battery of pharmacological regiments in search of the one that brought good seizure control for her predominantly partial complex seizures.
LIVING WITH EPILEPSY
The neurologist and medical staff counseled me to treat her as normally as possible and avoid the natural inclination to be overprotective, giving her as much self-responsibility as possible in her care. No driving, no tub baths and the usual cautions that “You can live a very normal life with epilepsy.” So we took it in stride and began the chronic illness journey. I was challenged by overprotection and time to get away from work for all the doctor visits, medication adjustments and lab visits for blood draws.
Carei asked if she could just be treated normally. She was embarrassed by the increasing seizures that were becoming more difficult to hide from those around her. Her partial complex seizures stemmed from the same area of the brain and manifested themselves the same way each time. These were not the tonic-clonic seizures people are familiar with. Carei’s seizures were frequent, often six to eight per day. She would often have an aura or awareness that one was coming moments before it arrived. Her eyes would move rapidly from side to side, head always turning to the left, body often frozen in place, unable to move or walk. They would last for about 30 seconds to one minute. Following an episode, Carei often cried.
It was scary, and felt out of control and embarrassing. It was increasingly difficult for her to concentrate and focus, and fatigue became the constant. Carei’s grades began to suffer, and there was frustration for both of us.
We continued the pursuit for the perfect seizure control drug. Eleven drugs in just three years, each with a gambit of side effects such as lethargy, weight gain and irritability.
As time went on, the improvements we sought were replaced by the onset of tonic-clonic seizures. We were fortunate that Carei’s first grand mal seizure was at home. Unfortunately, she was by herself, creating a new level of fear for both of us. I knew I could not be with her every moment and prayed this was just a one-time thing, that medications would eradicate any further seizures. I was always hopeful.
We continued seeking pharmacologic control and attempting normalcy in the face of epilepsy’s challenges. We began to attend support groups and information sessions to find alternatives for seizure control. In her senior year of high school, Carei was thinking forward to college. It would be even more important that she have good seizure control as I released her to further independence.
THE NIGHT PRECEDING DEATH
Carei had worked the night before at her job’s grand opening. I was grateful she’d developed a strong work ethic. She arrived home at 2 a.m. and had to get up at 6 a.m. the following morning for school. I was worried about her fatigued and encouraged her to stay home to sleep since it was the last day of school before holiday break, but she insisted – several of her classes were having parties to set the break into celebratory motion. I relented, again proud of her stamina and attempt at normalcy. I drove her to school at 7 a.m.
It was reasonable with the short night before and the excitement of the day that Carei was very tired. She lay down to nap before her date that night. I was working the late shift as an operating room nurse and wouldn’t be home until she was on her way for her much anticipated evening. In an attempt to not be overprotective, I encouraged her to get up after her nap, take a shower and make it an early evening. She agreed, and I said good-bye and our usual, “I love you, Care Bear.”
Before leaving for work, I glanced at the phone and shook it off, knowing the kids would page me if they needed me, since I didn’t have a cell phone.
Looking forward to a quiet, relaxing evening alone, my bliss was momentarily interrupted when I noticed the basement was dark except for the flickering light of the TV. I descended the stairs to turn it off. I could see Carei lying on the couch by the light of the TV. “Oh, no,” I thought. “She fell asleep after her nap and she’s late for her date.” I rubbed her back, calling her name, then noticed her arm was hanging off the couch, mottled with lack of circulation.
The events that followed are a blur – the screams, my resuscitative efforts, the ambulance, the bad news – all except the word “dead.” Carei was pronounced dead at 9:15 PM.
It was six days before Christmas and eight days before my wedding. The house was decorated for the holidays and filled with wedding gifts, Christmas presents and excited anticipation. My children were eager to be a part of a blended family, and the end of an era of my role as a single parent. Carei, always a romantic, was particularly excited about her upcoming first experience as a maid of honor at age 17. She loved her floor length green velvet gown with matching shoes. She frequently donned her elegant outfit in the week’s preceding the wedding, practicing that future walk down the church aisle.
Instead, Carei wore her maid of honor outfit for her funeral.
Between 9:14 and 9:15 p.m., my life was changed forever. I now knew it as the “before,” and the “after.”
Linda Coughlin Brooks is the SUDEP Institute Bereavement Support Facilitator and the May 2016 winner of the Christopher and Banks Amazing Women campaign, which recognizes the contributions women make to their families, friends, communities and society.