There are no words to explain how much this mom and her daughter, Katie, helped me Move Mountains as I ran across the Colorado Rockies. They were in my mind, with me in spirit and literally pushing me forward at times… the amazing thing is that I have never met either of them in person. They are two people that will literally leave an imprint wherever they go in this world and with whomever they come in contact with. Lenora shares her story of being a mom to a child with epilepsy below.
“There was a 60’s TV show called ‘Dr. Kildare’ starring Richard Chamberlain, that I watched as a young girl. One episode featured a beautiful teenager who had this mysterious illness called “epilepsy”. As a physician, Dr. Kildare tried to provide the best medical help that was available but sadly at the end of the episode the girl died. At the time, I couldn’t understand why that had happened to her and why it affected me so much…she looked so vibrant & healthy.
Years later, I saw my own perfectly healthy and beautiful daughter have a seizure. I had just put our children to bed and my husband also went to sleep. I was sitting on the couch studying one of my nursing textbooks. Awhile later, I heard a noise, it sounded as if an arm or leg had gently knocked against the bedroom wall during restless sleep. Minutes later, my little 8 yr old girl staggered into the living room mumbling with frothy saliva coming out of her mouth. I remember looking at her in disbelief thinking.. did she just have a seizure? As I placed her on the couch, she had a second seizure. That triggered a 911 call to EMS and a trip to the hospital. Tests and scans were negative except for some ‘slowing’ on her EEG. We were desperate to understand what had caused the seizures but there were no conclusive answers at that point. It was difficult for us to except what was happening as parents and for me as a nurse not being able to “fix” this. I had to bite my lip to keep my frustration in check with the lack of definitive answers I received from the medical community. We were given hope during the first year that she might outgrow the seizures. The best piece of medical advice we received from Katie’s doctor was, “Don’t to treat her like an invalid.” We took this to heart and made sure Katie lived a full life, pursuing her talents and dreams. Although we did our best to mask our worries and fears, I think she knew and tried to find ways to reassure us.
Just before her ninth birthday, Katie was home from school one day with a cold. She loved to curl up on the living room couch in front of the big picture window with her afghan and a book. From the kitchen, I heard her familiar ‘clicking noise’ when she had a seizure. I ran out in time to gently help her down to the carpet. Afterwards, I held her head in my lap and gently stroked her long blonde hair. Tears welled up in my eyes as I realized she was never going to outgrow this. Katie looked up at me, weakly touched my wet cheek and softly said, “It’s okay Mommy, it’s just a small part of my life.” I will always treasure that memory of my brave girl.
That was my turning point with Epilepsy as a Mom. It was then that I realized, if she could accept Epilepsy with dignity and grace, then she needed me to be strong as well. In my resolve, our family always made sure that she recovered to a reassuring smile and soothing words. It was my best piece of advice to others second only to the wise words Katie’s doctor shared.” ~Lenora