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Kristin’s Story

I always dreamed of being a mother to a girl. I imagined my child would have curly blonde hair, brown eyes, and a face like mine. She would act a little shy but quickly overcome it. In this dream, I would take her on picnics in our backyard; family vacations would be filled with adventures and discoveries. When I became pregnant with a girl, I was ecstatic! I knew my dream was going to become a reality, but the thing about dreams is they do not reflect the actuality of life. Life is unpredictable and volatile, you cannot control it, and you often get more than you ask for.

In 2014, my daughter, Ella, was healthy one day: rolling over independently, smiling, and babbling. She was doing everything expected from a 7-month-old. The next day, she had her first seizure. Her tiny body shook violently, and her eyes rolled in different directions; I became frantic; almost manic. Within forty-five minutes another seizure occurred. Her head dropped, her chin pressed into her chest, and her body went limp. During those thirty seconds, I believed my child was dead. I screamed for my husband; I started crying and shouting her name. In this moment, I understood what true turmoil and heartache really were.

My husband, Brandon, and I rushed her to the emergency room. I sat in the examination room confused and silent, trying to figure out what happened. I held Ella in my arms and Brandon held me. The doctor told us Ella had absence seizures, a condition not uncommon in young children; most of them outgrow these seizures in different stages of their lives. We were sent home and instructed to make an appointment with her pediatrician and a local neurologist. Before we could make the appointment, Ella had eight seizures in one day. We went to a different hospital where they immediately admitted her.

Her hospital room was empty, the air conditioning on full blast. There was a leaky faucet that dripped. There was a brown wooden bench with a blue cushion for families to sit and wait. Ella’s white hospital crib reminded me of a cage, metal and cold. Nurses came in to ask questions, but no one offered us answers. I wanted to scream at everyone who came through the door. I wanted to force answers out of the doctor’s mouth. He insisted they would know more once the test results were back. I wanted this to be over, to be home with Ella in her warm room with her wooden crib, pink blankets, books and Geoffrey the Giraffe. This was barely the beginning of a battle I did not know how to fight. Instead of letting my fury and frustration out, I decided to be quiet. Ella needed me to be strong as she was hooked to an EEG. The scene startled me; they marked her head in various spots with black and red markers and glued electrodes with wires to her head. When they finished, it looked like my child was disguised as Medusa, wires for hair and ready to cast a spell. This was an image I never thought I would be able to get used to.

We spent many weeks in the hospital, watching Ella have seizure after seizure. There were no cues or signs when they would occur. Every seizure was different, and some were worse than others, which kept me anxious and awake. I stayed beside her crib, studying her movements, watching for a jolt or a shudder from any part of her little body. There were times when she held her breath, and I would count how many seconds it took for her to gasp for air. Some of these seizures lasted seconds, others minutes, and with each one, I held my breath until it was over.

I prayed to God, to Buddha, to any deity who could hear my cries. One day, Ella had a hundred seizures. Not being able to stop them caused my own personal storm. It was like living within a tornado, spinning with no escape. I watched the nurses stick IVs in her head, take vials of blood from little her arms, puncturing her pure white skin. They performed a spinal tap; my little girl had become their human pincushion.

Brandon and I worked together as a team. At times we both sat on the bench by her bed, and other times we worked in shifts. Sometimes, Brandon had to go to his construction job because even if it felt like our world was collapsing, our bills still had to be paid. When he was camped out in the room with her, I would not go far, afraid if I left the hospital, something awful would happen in my absence. The pediatric team and neurological team did not work well together. They would visit us at different times and suggest different plans of care. I lost confidence in them quickly.

There was no room in this hospital for my anger, nowhere to place it so I held it close and sat numb. I had family members suggest my breast milk was the culprit, which infuriated me. However, in silence, I blamed myself because I carried Ella; she developed inside my body. I analyzed and judged every piece of food I put in my body during her pregnancy, questioned everything I did or did not do. I analyzed the details about how Ella was conceived because she was a fertility baby. Maybe I was not supposed to bring a child into this world and because I went against nature, this was the punishment for taking fertility treatments. I believed that in some way, I failed her. Two weeks after her first seizure, I climbed into her hospital crib and lay beside her. I squeezed her in my arms and cried. I wanted to switch places, take the IV from her and put it in me because I knew I could handle it. Ella was sleeping so peacefully, and I took comfort in her ability to dream during this nightmare.

We spent three weeks in the hospital room; doctors and nurses would come in and out freely at all hours. We had been stripped of our humanity; we had become part of the hospital routine, nothing more than boxes to be checked every six hours. They quit asking questions, they stopped charting her seizures, and they unhooked her from the EEG. Eventually, the team of doctors told me Ella needed 24-hour nurse care and warned me, she would never walk or talk. This revelation felt like a sharp knife in my back. This was not a fate I could accept for my child; I wanted another opinion.

Within hours we were transferred to a new facility, with a new team of doctors working together with us to develop a plan. Through this storm in our life, Ella remained cheerful. She would smile, babble, and laugh. Ella did her best to progress and tried to crawl during the moments when the odds were against her. I became hopeful again. Ella was diagnosed with left frontal lobe epilepsy and intractable epilepsy meaning her seizures were hard to control with medicine. The new doctors found a combination of medicine that helped.

We left the hospital with a plan of care for Ella but not a cure. The plans and dreams I had for her were changing, but my love for her stayed constant. Her medications took away her appetite and she had a feeding tube placed so she would gain weight. Instead of going on the picnics in our backyard, I am making different memories with her and her daddy in a new normal, which includes her in-home health aids and grandparents. We spend many vacation days going back and forth to out of town medical clinics, to see her doctors. I have had to learn to focus on the day in front of me with the child in my arms.

Ella is seven now, with blonde curly hair, hazel eyes, and her daddy’s face. Despite all the obstacles, she has been a resilient warrior. She does not flinch when she is poked with a needle. She patiently holds out her arm because those experiences are her normal. Her outlook on life is positive; she is happy and lives every day to the fullest. Ella still has seizures, less frequently, but she is walking and talking. Her favorite phrase is “I love you,” and she does love everyone she meets. This experience has given us the opportunity to meet amazing individuals, which has had a positive impact on our lives.

Although motherhood is not what I pictured, it is precious and profound. Ella has become my role model, but she still needs me to teach her one or two fascinating things about life. Often, I place Ella’s hand in mine and say, “I will always take care of you.” Lately, I have learned the roles have reversed because Ella is taking my hand and guiding me through her life’s journey.