Our World Starts to Wobble. As I stood there watching, Jessica was definitely experiencing something rather odd. If I had possessed a phone like I have now, I would have shot some video. It would have been great to have it clearly documented. It was like a phantom passing before me and then vanishing. ‘Did I really see that?’ I wondered to myself at the time. Instead of shooting video, my thoughts did turn to the events on Halloween night, just two weeks before. I had taken the kids ‘trick or treating’ and since Renée had a choir practice, she had taken Jessica to church. Later that evening when we all got back together, I remember going out to the car to carry Jessica into the house, and the first thing Renée said to me, with a slight tremor in her voice was, “Something is wrong with Jessica…” her voice trailed off in the dark, but I could see the look of alarm on her face. I looked at Jessica. She was sleeping like an angel, nothing seemed amiss. “What do you mean? What’s wrong?” I said, feeling puzzled. What a Difference a Day Makes. Apparently, Jessica had cried all evening in the nursery, and although several of our friends tried to comfort her, she was unconsolable. Finally they came and found Renée. Eventually Jessica had gone to sleep in her arms and Renée came home. It was puzzling, although Jessica had received her first DPT vaccination that morning and they said she might be fussy. That was probably it we decided, and that seemed like a reasonable explanation at that time. The next day after that Halloween night, I had left early for work and so I didn’t see Jessica at all until later that evening. It was my habit to play with her as soon as I got home. I would sit her on my knee hold her little hands and bounce her and make noises and she would watch me intently and coo back. When I picked her up on that day she had seemed distant, almost like a stranger to me. It had been disturbing and I felt rather uncomfortable. Something had seemed very different. Read more…

Fighting the Panic. The shocking news that our baby Jessica could not leave the hospital was starting to sink in. I guess I responded in the same mind-numbed way many parents do when their child is in danger. I tried to compose myself. I fought back the sense of panic, as I tried to calmly speak to Renée. Our hearts were beating and hurting as one. I assured her over and over that everything would be okay, but as I hung up the phone, I… felt… crushed! I got on the phone to our family doctor and then the insurance carrier. The problem was an elevated ‘bilirubin level’ which is an infant form of ‘jaundice.’  This was new to my vocabulary, but apparently often occurring in premature babies like Jessica. After intense negotiations on the phone, inspired by the memory of Renée’s sobbing ringing in my ears, I was able to reverse their decision. If Jessica was staying in the hospital, then Renée would be staying as well. I relayed the information to Renée later that day and then headed off for the hospital to see her and Jessica. We talked everything over and that helped to calm us both down for the time being. After nursing Jessica, Renée fell into an exhausted sleep, I tip-toed out and headed home. A crisis had passed. Squirming and Crying. After two more days in the hospital, with periodic monitoring of ‘bilirubin levels’ in her blood, little Jessica improved enough to go home with us on a conditional basis. The condition she was released under was that every morning at 7:30 am as long as was medically needed, we would take her in as an outpatient for blood tests. So began the first week of Jessica’s life at home. For eight days we would arise early and head down to the hospital. Facing the squirming and crying on a daily basis, as her tiny arms and legs were jabbed with needles to draw the necessary blood, was excruciating for us all, especially for Renée. Blessed Relief at Last. Finally she was declared okay by the medical staff and the daily trauma was over. The calming effect of a more normal daily routine was welcomed. The black clouds of doubt and uncertainty had receded and the falling tears seemed like a distant memory. Life was Rosy Again. Read more…

The Number One Question. One thing that we are often asked at many different times in many different ways is “…what happened to Jessica?” Well it all began as a mystery which started on a frosty Halloween night in 1978. I had taken the kids that night and my wife Renée had gone to church, since she had a choir practice. She had taken two month old Jessica with her, while I took our older kids, Jamie who was 10 and Jon age 7, out ‘trick or treating,’ and then home to bed since the next day was a school day. It seemed like a normal crisp fall day, but this day for us… would be like no other. Later that evening when Renée came home, I remember going out to the car to carry Jessica into the house, and the first thing Renée said to me with a slight tremor in her voice was, “Something is wrong with Jessica…” as her voice trailed off in the dark, I could see the look of alarm on her face and small tears in her eyes. I quickly looked at Jessica. She was sleeping like an angel, nothing seemed amiss. “What do you mean? What’s wrong?” I said, feeling completely puzzled. What I didn’t realize at that moment was the now obvious fact that we had just passed a crossroads and were unexpectedly on our way to a strange new world. The Undiscovered Land. We would soon find our family immersed without warning, into the ‘land of broken toys,’ kicking and screaming as we went. It was bewildering. There were very few places to turn for help and advice back then, and as inexperienced, non-professionals, dealing with this new ‘special world,’ we were unprepared. Looking back now, I can see the motivation forming that 25 years later compelled me to become an author of books about our journey. I was to become a ‘reluctant author.’ We have come to call it ‘Adventures in Jessica-land.’ It is a land of many wonders. Precious moments mixed with heart throbbing terrors, but certainly not boring. It requires some ‘growing up.’ I am speaking to you now from that once undiscovered land, as a full time resident. Maybe you are there also as a caregiver or caregiver supporter. Read more…