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The Comfort of Trusting God… and letting Go.
The Comfort of trusting God. I felt as much to blame as anything else for Renée’s now obvious misery. It was time for outside help. We needed someone who could reach her. It had to be someone who could get her back on course, and as I thought it over, I knew just the person. Rachel, was the wife of the assistant pastor at our church, and there was no doubt she had a calming ‘big sister’ kind of effect on Renée. I was sure that Rachel could help as I turned over in my mind the many examples of their relationship and the mutual love and respect between them. Renée needed to talk to someone like her, and I knew Rachel would be loving but tough, and would unselfishly go the extra mile if need be. I wasn’t sure how to approach Renée about it. The direct approach seemed right. When we were alone and could talk freely, I sat down with Renée and looked her straight in the eye. I said to her, “I think you have two choices.” I hesitated, looking deeply into her tender brown eyes. I could see the tears welling up and the lines of pain in her face. I wondered how I could have been so completely blind to her now very obvious anguish and pain. “Either you get in the car and go see Rachel or…” I swallowed hard and took a deep breath, “…I will put you in the car and take you over there.” I was desperate. She dropped her gaze and said… “Okay… okay, you’re right. I need help. I have questions… I… okay, okay… I will call her and see if she can see me as soon as possible.” On the Road to Recovery. And so, her recovery started that very day. Renée and Rachel shared together, they prayed together, and they cried together. They began to meet every week and Renée began to turn around almost immediately. She came home with assignments from Rachel. Things to do with each of us. Renée began spending time alone with each of our other children, slowly beginning again, to appreciate and cherish her family… Jamie and Jon… and don’t forget Jim. She was no longer frightened of Jessica. Read more…
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Hitting the Wall!
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…
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Dark Clouds Appear.
Two Different Perspectives… Renée’s parents divorced when she was about three and she spent a number of years in foster homes separated from her father and brother. During that time in her life she began having re-occurring nightmares about her alcoholic mother. Her mother had actually kidnapped her when she was a child… more than once. These disturbing dreams would continue to haunt her clear up through her high school years. When she was at last reunited with her father and brother, shaken and insecure, she felt that she had to prove herself worthy of their love. With a child’s tender faith, her first prayer was, “Please God, don’t let anything happen to my daddy!” Renée resolved in her heart to be the perfect daughter and sister and to never give anyone a reason not to love her. The Perfect Wife… When we met, married and started our family, she extended her resolve to be the ‘perfect’ wife and mother. Remembering her painful past, she had fixed in her mind the idea that she would be the ideal loving mother, who would nourish her little children and protect them from all harm. Then Jessica entered our lives, and she found herself facing the ultimate challenge. Renée’s ‘Haunting Past’ Returns… As Jessica’s life turned more and more away from the normal, the demons of Renée’s past returned to haunt her. Her world was beginning to unravel and there was very little she could do to control it. This was an all too familiar feeling and she was slowly devastated. We moved through a constant world of doctors and tests and puzzled looks and exhaustion. When would this be over? She couldn’t bear the thought. In the ‘Jaws of the ‘Beast…’ Jessica lay sleeping calmly in the jaws of the enormous CAT scan machinery. She looked so very normal lying there in the dimly lit room, wearing her little pink dress, white frilly socks and patent leather shoes. There was a slight clicking sound and a bright red cross-hair appeared from above, centered on her tiny forehead. Then, a slight whirring could be heard as her metallic bed moved imperceptibly. The whole scene was once again very surreal like a bad science fiction movie… but all too real. Renée’s head was spinning with a torrent of emotions as she watched from a distance. Read more…
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Aching Hearts & Feeling Numb.
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…
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Electroencephalogram
Electroencephalogram (EEG) The big day dawned brightly and the recent heavy snowfall began to melt, as the day turned into a rather balmy, sunny day for early January. We bundled Jessica up and headed down to our 8:30 am appointment. We had kept her up as late as possible the night before, as they had instructed us, so that she would sleep through her ‘EEG’. We would be testing her brain functions. ‘Electroencephalogram,’ or EEG, was another new term for us. It was something we had vaguely heard of but had never experienced. It basically measures ongoing electrical activity in the brain. The measurements are accomplished by placing a number of electrodes, actually pasting them, on a patients head, and the result is graphed on a slow moving sheet of continuous paper with a pen for each set of measurement points. We watched silently with a lump in our throat, as the technician methodically pasted what looked like rubber suction cups with a wire attached, to Jessica’s tiny head. She lay there looking as normal as apple pie, breathing slowly as she slept, in her tiny pink chiffon dress. The machine began to gently hum as paper cascaded slowly through the printer. Holding my breath… Later, Renée, Charlotte and I sat waiting in Doctor William’s office, trying not to fidget. I was hopeful, but I couldn’t shake the memories of that Friday afternoon when everything had changed. Somehow I knew, although it was difficult to speak it, that something was, or had gone terribly wrong with little Jessica. The ‘blessed one’ I thought. How ironic. I was braced for the worst, although I hadn’t really expressed my fears to anyone else. The Marathon Begins… I had already committed in my mind that I would do everything I could to get to the ‘cure’ or whatever Jessica needed. I could sense a marathon of doctors, medicine, tests and machines awaiting us and perhaps we should give her therapy so that… the door quickly opened, interrupting my thoughts. I looked up into the somber face of Doctor Williams. He cleared his throat and began to speak the words I will never forget. “Well, I will get right to the point. Read more…
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A Deepening Puzzle.
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…
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Our ‘Adventure’ Begins
Did We Miss the On-Ramp? It was August 25, 1978, my wife’s 34th birthday when our baby girl was born. The next day we decided on her name. ‘Baby Walker’ became ‘Jessica Elizabeth Walker’. Our baby had a name! We had chosen ‘Jessica,’ it meant ‘blessed one’. Her middle name was chosen after my mother’s middle name. We found out later the meaning of the name, ‘consecrated to God.’ My last name ‘Walker’ comes from the root of ‘forester’ or more precisely, ‘one who walks among the forest,’ and so putting it all together, our baby girl would be… ‘Blessed one… consecrated to God… who walks among the forest.’ How could anyone not succeed with a name like that? We had no idea at that time, how meaningful and comforting the deeper meaning of the names we had chosen so lightheartedly that day would be to us and to many others, as the years rolled by, but for now Jessica ‘the blessed one’ was here. We looked forward to the days ahead and getting our lives back on ‘cruise control.’ Something, that unfortunately would never really happen again. We were headed down a different road. Shock and Tears. The next day the phone in my office rang. It was the morning of the day that Jessica would be coming home from the hospital. I had gone in early that day to finish an urgent project so that I could take off work that afternoon and spend the rest of the day at home with Renée and Jamie and Jon and of course Jessica. It would be our first evening together as an ‘expanded’ family. Jessica and her proud little mother were coming home at last. Everything was in place and waiting: a pretty little crib, sweet little baby blankets and a slew of new toys of every description, not to mention a breathlessly expectant, big brother and sister. All things were now ready. Excitement was in the air, because today was the big day! Pre-occupied with my work, I picked up the receiver and mumbled “Hello?” no answer. “HELLO!” still no answer. I started to hang up, but at the last instant, I heard something. It sounded like a sobbing… a gasping and then more crying. Read more…
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A Mystery Appears.
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…
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At Last We Meet Our ‘Little Heartbeat.’
A Bump in the Road. When we made our decision to love and keep our unexpected child that day in the doctors office, we had of course, no inkling of how much this child would ultimately alter and enrich us. It was to us at the time just a ‘bump in the road’ and we would adjust and go on wtih our family. Soon we would meet face to face and that was that. No big deal. We did not know that January day in 1978 that we were about to be changed very deeply, and in so many ways. At the time, we could not even start to imagine anything unusual happening. Looking back now, I can see that the commitment we made that day, was a decision that changed the course of our lives. It was not a ‘bump in the road’ it was a major life-changing detour. But even so, with that decision behind us, the ‘growing’ in our lives was beginning. At Last We Meet. “Mr. Walker… Mr. Jim Walker!” The gentle, but professional sounding voice of the maternity room nurse had interrupted my focus on the television in the waiting room. “You have a beautiful baby girl, Mr. Walker,” she gushed, with an excited smile. “Would you like to come meet her?” It was August 25, 1978, my wife’s 34th birthday. I was feeling a little unprepared, since this baby, our third child, was not expected for at least another three weeks. Rubbing my eyes, I walked into the half-darkened recovery room and the first thing I saw was Renée’s beaming smile. She has a very radiant smile, a way of smiling with her entire heart and soul, and this time she was lighting up the room. I looked beside her on the gurney and saw a beautiful little red faced girl with the biggest dimples. She had worked one arm free and was waving it in my direction as if to say ‘come closer dad.’ Instinctively I reached out for her hand and she instantly grabbed my finger with a fierce grip. Over the years that first touch has stayed with me and I tenderly cherish that moment. The watching nurses murmured in the background. “Wow! Look at that grip. She sure knows her daddy!” A Whirlwind of Excitement. The next few days were a whirlwind of new born activity. Read more…
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What is ‘Adventures in Jessica-Land?’
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…
Inspirational Guide for Caregivers
Our Books
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Growing Up with Jessica
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Lessons from Jessica
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Prayers from Jessica
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