Unraveling the ‘Mystery.’ A wise old sage once said… “Doctors are like plumbers… some are real artists of their trade, while others… well, let’s just say, their pipes leak!”  After consulting and working with over 60 medical experts and doctors in the first two to three years of Jessica’s life, I would have to agree, it is a mixed bag. Members of the medical profession, in my mind, are no longer up there on a pedestal. They are not infallible. An Amazing Gifted Doctor. There are, however, some very unselfish and dedicated doctors out there. Some of them very bright. One such is Dr. Robert C. Burton, or as he once said to us… “… not the actor, you know, I am the other one.”  He was a delightfully humorous and refreshing personality and an absolutely brilliant neurologist. Dr. Burton was the founding partner at Neurology Associates, coincidently the very same practice who had, through Dr. Williams, done Jessica’s first EEG. He had also been the Director of Children’s Medicine at the MAYO Clinic for more than a decade. When other neurologists would go to a seminar, Dr. Burton was one of the people they were going to hear speak. He once had made medical history by determining that rabies had been transmitted in an eye cornea transplant, against all odds and in spite of the skepticism of his contemporaries. It was the first time such a thing had ever happened or at least was correctly diagnosed. He was an uninhibited and brilliant thinker not affected by prevailing medical biases. He became one of the vital keys to our solution of the ‘Jessica mystery’ and an important cog in our future adventures. A Lighted Candle in the Darkness. One Monday morning, Renée answered the phone… “Hi Renée, this is Carolyn. I saw something on TV last night that made me think of you guys and little Jessica…” she paused. Carolyn was a friend from church and also a former registered nurse, who was very familiar with our predicament. “I think you should check it out,” she went on with excitement in her voice. “There was a little boy on the show that sounded like he had the exact same problem as Jessica!” she breathlessly finished. “Did you see it?” Later that evening when I came home from work, Renée shared the information with me. Read more…

Staggering forward…  What do you do when you are faced with a situation that has no easy solution? No ‘quick fix’. No ‘medical breakthrough.’ No ‘miracle’ cure. No ‘diagnosis.’ No ‘explanation.’ You talk to dozens of doctors and specialists and get the same puzzled looks and quizzical expressions, usually followed by… “Well, she certainly is a mystery.” There was no end in sight. What would you do? Here’s what we did. We staggered forward. We knew that Jessica ‘the blessed one’ was a very special person loved by God, and we loved her all the more tenderly as the years passed by. Renée and I and our children, Jamie and Jon, formed a ferocious bond of love with this petite little girl who does not speak, nor in her early years, even sit up or roll around. We could sense her strong little spirit behind her disabilities, and we showered her with our love and attention. I think it could be said that, if love could cure her she would be cured. And this mysterious little stranger gave us many unforgettable lessons in ‘unselfish love.’ Hold on Tight. All the while Jessica endured the tests and probing and poking, and the days inched slowly by, turning into months and the months into years. We staggered forward, growing closer and closer together, helping each other cope, holding on tight and trusting the wisdom of God. I remember that day in the hospital when we first met and she grabbed my finger tight and held on so fiercely, as if to say…’ hold on tight dad!’ Our friends and our faith in God comforted us and we went slowly forward, measuring Jessica’s progress in the minutest of terms. “I think she looked… noticed… reached out to me… today!” Her life was in perpetual slow motion. The ‘Mysterious Villain’ Eludes Us Daily. Of course, the ‘search’ continued unabated for the mysterious villain that had harmed her, and we never stopped looking for the answer. Sometimes, when we were exhausted mentally and physically we would be feeling like quitting… then one look into Jessica’s eyes, and sharing a look with her, was all it took to keep going and going and going. When you have a ‘handicapped’ or ‘special’ child, sometimes in your dreams at night you see her running and laughing and playing and the joy in your heart is indescribable. Read more…

Hitting the Wall… Denial and Anger. My wife Renée, is a very loving and special person and it was frustrating to see her suffer so deeply. The ‘perfect’ life that she had wanted and worked towards, was slowly and inevitably spinning out of control. She was like a top that was starting to wobble… a sure sign of the crash that was coming. As the tests mounted and the list of medical experts grew with the same puzzling results and no sure answers, the panic mounted in her heart and soul. ‘Why? Why was this happening?’ In her mind she was crying out to God. ‘No! NO! Lord, how could you allow this to happen?’ I guess you could say she was in denial, refusing to believe what was becoming slowly more obvious. Jessica might never recover from this mysterious ailment. To consider that Jessica’s problems were permanent was just too much for her. Eventually, guilt began to take hold of her, as she asked herself the old questions, stoked by her painful childhood memories of rejection by her own mother… ‘What have I done?’ ‘Lord, why are you punishing me?’  ‘How have I failed You?’ Into Personal Despair. As Renée was sucked deeper into despair, was also the same time that Jessica began several forms of therapy, sometimes alone, other times with other handicapped and ‘retarded’ children. As she became acquainted with the whole scene she told herself… ‘Jessica is not abnormal… she doesn’t belong here!’  She was feeling increasingly desperate. Her despondency made even the simplest tasks seem insurmountable. She became more unengaged with our other children. She was unable to function as a loving wife and mother. She was trapped in a nightmare and she couldn’t wake up. As time crawled slowly by in the seemly endless routine of therapy and doctors and genetic tests and more tests and more puzzled expressions, she was feeling more and more emotionally drained, and then her anger showed up! Feeling Abandoned & Angry. She was feeling abandoned by God and became increasingly angry at Him. She actually became frightened of Jessica and confused and overwhelmed by her baby’s grim future. Not sure she had the courage to cope, she began to retreat from everything she held dear… her family and friends… church… and most importantly of all from God. Read more…

Aching Hearts & Feeling Numb… The doctor’s words had a numbing effect. I looked at Charlotte, she smiled in a comforting way and asked the Doctor several questions. I looked at Renée. She was frozen, her eyes wide as she grappled with this new information. My heart ached for her. I knew what she must be feeling, because I felt it too. I am sure any parent can understand our turmoil. This was really happening! “I am recommending we do some more testing,” the doctor said hopefully, sensing the impact of his words, “…there’s a new type of brain x-ray called a ‘CAT Scan.’  It means ‘computerized axial tomography.’ It is completely painless and quick and maybe it will give us a clue, as far as what we are dealing with…” his voice trailed off. I looked at Renée, and as our eyes met, I could see the shock and pain on her face. “Okay.” I said, “Let’s do it as soon as possible!” On the ‘Learning Curve…’  We needed to do something, I thought. Anything and everything! We gathered Jessica up in awkward silence, and after a few polite thank you’s we headed home. I dropped everyone off at home and headed straight for the library. I was feeling a little dizzy with all of this. ‘EEG’s, ‘brain seizures,’ ‘CAT scans.’ I needed to know what we were up against. ‘What were brain ‘seizures?’ ‘What were the implications of a child with ‘brain seizures?’  I had to have some answers. We had learned so much in our crash course in neurology, but I sensed  an overpowering storm of new challenges. It was hard to know where to start. So that is why I turned to the ‘Library’ to try to come to grips with everything. I wanted to make the fear of the unknown go away if I could. As I looked in the ‘subject index’ in the card catalog at our local library under ‘seizures,’ a familiar name popped up. ‘Dr. James Dobson.’ Apparently, before he began to write and teach about Christian-based child rearing, Dr. Dobson, who is a clinical psychologist, had co-authored a book on mental retardation, with a section on ‘Seizures and Epilepsy.’ I was comforted by seeing his name. A name I knew and trusted. I found the book and began to read. Read more…