“We Will Never Give Up!” ‘We were not giving up,’ I thought, ‘We will never give up! We will find out what’s wrong and we will fix it and our little world will return to it’s orbit!’ I was determined, because I believed that somehow, somewhere, the answer was waiting. But, in the meantime, we would do everything we could to help Jessica. I thought of Charlotte’s quiet comment, “…some kind of seizure activity.” I shuddered at the implication of that. No doubt about it, we were heading into uncharted waters. I looked at Renée and she was looking at me, as she sat there with Jessica in her lap. I noticed the tears in her eyes and the slightly hopeful look on her face. We had begun the fight to return to a normal life. We were committed. Little did we know what lay before us. A greater question was forming in my mind. ‘Why Was this Happening to Jessica?’ That night the doctor wrote in Jessica’s medical record, “…examination unremarkable today…” and then, “…although I think that a consultation with a neurologist would be appropriate.” And so we scheduled the appointment that night, and off we went still in the void, desperately hoping for answers. Commitment & Endurance. When you are facing the unknown, which probably includes a bewildering affliction, such as we found ourselves eye to eye with, you begin to fully understand what ‘commitment’ means. Commitment is the word without an end. It is a critical part of every other good thing. It is easy to say, but hard to do. It requires that you ‘choose’ it and it requires ‘sacrifice.’ Two things that do not come naturally or easily. That is why deep commitment is rare.   Choosing to Commit. Why is commitment so difficult? When we look around us in the world today it is easy to see ‘lack of commitment.’ A case can be made that lack of commitment leads to many secondary problems. As caregivers our commitment is tested everyday. We are tested in every way imaginable and in ways we cannot imagine. We have to get in the fight and get our hands dirty. With commitment firmly chosen we will get up when we are knocked down, we will keep going when we are tired, we will never stop trying to succeed. Read more…

Alone on an Island. After experiencing the terror of the unknown everything seemed like it was back to normal. The whole experience, the twisting, the brush with what appeared to be a tramatic death, all seemed lke a bad dream. But it was a very vivid one. A nightmare that even today I cannot shake. After we returned with Jessica to the doctor’s office, we sat quietly waiting in the lobby of the medical center, watching a steady stream of coughing, sniffing children pass in front of us. It was now nearly 7 pm. Sitting there, feeling very alone on our own little island, we had been waiting for almost four hours. The routine had become monotonous… staring at little Jessica who was sleeping in her baby carrier at our feet… a furtive glance up when the nurse would appear to call the next patient… a glimmer of hope and then disappointment… a glance at each other and then back to watching our baby. Jessica looked so perfectly normal as we looked at her peacefully dozing, her long curly eyelashes and gentle breathing made the experience of a few hours ago seem very distant. Maybe… just maybe… there was a chance… but, no… the reality of the horror I had witnessed was seared in my mind, like nothing I had ever seen. Even today as I write this, many years later, the pain I felt then, comes flooding back as I force myself to re-live the experience. “Jessica Walker?” I jumped, as the tired sounding voice of our doctor’s nurse, interrupted my thoughts. Confronting Our Fears. We gathered Jessica up, and headed through the door, down the hallway to the examining room that we had left just hours before, but, this time, Renée, Jessica and I were different people. We had stepped out of our comfortable little world, into an unknown and apparently dangerous new one. The lines of fatigue were clearly showing on our doctor’s face as he listened to our recounting of the afternoon’s events, occasionally nodding, sometimes looking skeptical or puzzled. Then, as we finished, he sat there silently. It was very, very quiet in the room. My heart was thumping hard as I waited for him to speak. The Confrontation. After what seemed like an eternity, the doctor cleared his throat, shrugged and began to speak, “…uhmm, well you know.. Read more…

In Way Over Our Head. After our nurse friend Charlotte had examined Jessica and seen her strange behavior she advised us to start keeping a journal and ‘logging’ her little episodes. We began to do that right away, and it did not take long before we were convivnced of the pattern and the reality of what we were observing. It was something serious and it was not going away. With a distinct sense of dread, we kept our little notes and hid our fears in our hearts, as we prepared for our next appointment with our doctor. We had to solve this mystery. We had to wake up from what was looking more and more like our worst nightmare. We didn’t want to speak it, but, something seemed to be dreadfully wrong with our little Jessica. Time Stops on December 29, 1978. There is an old classic science fiction movie about a man from outer space who lands on earth with a mission to force the world to put down their atomic weapons and live in peace. Of course he was rejected and persecuted. So to make his point, he did something that struck terror into the hearts of the ‘earthlings’ and really got their attention. It was called ‘The Day the Earth Stood Still.’ He made his point in an unforgettable way. December 29, 1978 was the day ‘our world stood still’ and we will never forget it. We had an appointment with our family doctor on that day. It was on the last Friday in December, just before the big New Year’s Day weekend. Because of our concerns about Jessica’s strange spells, which we had carefully documented, I had taken the afternoon off from work to go with Renée to Jessica’s four month check-up. What Happened at the Doctor’s Office. We marched in there fueled by our concerns and armed with the little journal of our baby’s strange behavior. A lengthy discussion followed, and no matter what we said, the doctor persisted, over and over reassuring us that all was well and it was probably nothing more than a stage she was going through that would disappear as she matured. He could see no reason for concern, and looking back now at his notes on Jessica’s check up that morning, he makes no note of our discussions. Only that she was a ‘well baby’. Read more…