Hello, My Friends! I am so eager today to share with you the Legendary Life of my daughter, Jubilant Jesyka. My words of her legendary life could fill volumes, I will give you a digestible story.

July 1985, Life blessed me with the birth of my first child, Jesyka. Her jubilant nature adopted her the moniker Jubilant Jesyka. She was born with a smile, never met a stranger, and always brought sunshine and happiness into every room with her brilliant energy and smile. This is her story as her life adds to Our Journey. I hope you enjoy and leave a comment below before sharing with everyone you know.

Jesyka’s birth was the miracle that set Our Journey with a specific Epilepsy-related condition into action. As hormones in my body shifted after her birth, seizures triggered, and genetic Peri-Ventricular Nodular Heterotopia became an active part of our lives.

She grew to be a lover of music. Even in utero, she developed a love for music from the ‘60’s era. As a baby, not even a month old, she would respond positively to Van Morrison’s ‘Brown-Eyed Girl’. I sang it to her frequently along with other favorites. Van Morrison’s ‘Brown-Eyed Girl’ remained “her song” ‘til long after her life on Earth was gone.

 

While she was playing with friends one warm Tennessee day, she collapsed and began to seize uncontrollably. Seeing the life flow from a child’s face and not knowing why or having any experience in handling such emergency is a mother’s nightmare. As the trained professionals called through 911 arrived to help, I remained at a loss. The reason for her seizure was a mystery. Her pediatrician had no answers, so I relied on the Great Healer (God). As I prayed and honored prayer with moments of silence to listen, ideas began forming in my mind and information became available to me. Soon she and I were enrolled in a seizure study which brought about our genetic diagnosis of PVNH.

Approximately seven years later we would see a unique change in Jesyka’s seizure symptoms. It was a morning we were scheduled for doctors’ appointments. I called her name to wake her and heard nothing. I walked up the stairs of the old house we lived in to wake her only to find she had been through a neurological event leaving her unable to speak, unable to recognize me or her father, and unable to lift her body out of bed. It was as if she had reverted to infancy. This puzzled even the best of specialists and lasted months. Then, it left her as quickly as it attacked, and she became whole again allowing me and her father to teach her how to speak, walk, eat, bathe, and write once again. She was almost Sixteen.

While navigating her life with Periventricular Nodular Heterotopia and Refractory Epilepsy, she was determined to be aJubilant-Jesyka-Legendary-Life good mother. Several years later she met a special young man, they fell in love and soon had a daughter. Before she was 20, we welcomed her daughter Ana into our world.  Ana would grow to be strong and a bright light of Sunshine, just like her mom. She would face more heartbreaks and challenges than most children and overcome each with dignity.

Jesy taught me to keep looking forward through all of life’s storms. She often butted heads with her father as most daughters would. She loved her daughter deeply in a way that reflected the relationship she and I shared as she grew. I would often draw strength and energy from her, and she would, in turn, draw comfort and energy from me.

She was so much fun to be around. We even enjoyed what most would consider frightening seizure testing and daring drug studies. During one drug study, we would feel the effects of the medication and laugh and play together like children. This was intentional because the medication gave us reason to slip into our child-like imaginations to take daily “breaks” from life. However, the fun would not last long…

jubilant-jesyka-legenday-lifeNovember 27, 2012 about an hour after I spoke with her on the phone, sharing our morning “I love you’s”, I received a call changing my life forever. This one stated Jesyka was gone. It was as if I lost my sense of reality or my hearing in that moment. I had the caller repeat what he was saying several times before it sank in. Her lifeless body, taken by Sudden Unexpected Death in EPilepsy (SUDEP) had been found by friends. Still today I cannot describe the heartache I felt. A large piece of me died that day along with Jubilant Jesyka.

I believe the gift of Jubilance was innate, born into her. It was not until her last year the smile faded. I often wonder where her smile went. Was it stress, or did she intuitively know of her demise? This answer I will never know. I do know, however, her heart’s desire was to see that Positive Seizure Management becomes available to every adult willing to take responsibility and action to feel better and possibly safe his/her own life.

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