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Growing Up… with Jessica!
Growing up with Jessica… she fixed us, as we ‘grew up’ with her. So there you have it… a peek into Jessica’s life, and our lives. The true story. Renée and Jamie and Jon and Jessica and I, have been on this exciting adventure in ‘Jessica-land’ for many, many years now and it has sometimes been a wild ride. There have been the slow moments of mysterious anticipation, like a roller coaster climbing to the top of a precipice, and then a few giddy, giggly, light moments at the top, before you rush downward into the void with a goose bump popping rush. You rush right and left, up and down, barreling suddenly around a corner into the dark and out again into the blazing light. It is definitely not boring, if you know what I mean. From My Heart to Yours. I have done my very best for you. I have tried to give you an honest sample of how we have staggered on, and why and how. How we grew stronger, overcoming despair and ‘growing up’ right along with Jessica. As I said earlier, I may not know who you are or why you are reading this. However, I do know this. You and I may never pass this way again, and so I have shared the innermost thoughts of my heart with you to hopefully offer you the same hope that I have discovered. I am not ashamed to admit, that many times the tears came as I relived the good times and the bad, along with you. Our family is not somehow super special. We are just an ordinary family in extraordinary circumstances. True Love. Renée and I have discovered something vitally important. In fact, it is the most important discovery of our lives. It is what I call the ‘answers to life’. I mentioned before how Renée and I began to study the Bible, looking for answers to questions like, “Is GOD really out there?” or “Was the Bible TRUE?” or “What was REAL TRUE LOVE all about?” Well, as I have said, we found the answers to our questions. We found our Christian faith in God and it was the solid rock that we needed when the storms came. Renée and I, each in our own way, weathered the on-rushing waves of despair and anguish and fear and heartbreak. Read more…
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Hanging in There… the Long Haul!
Hanging in there… the long haul. In your life, has anyone you loved very, very much, ever died and left you grieving? Imagine, if you will, experiencing that feeling every single day of your life. Now you know what we have felt. I am not telling you this, so you will feel sorry for us, nor am I trying to be overly dramatic. I am just trying to find the words and the illustrations to communicate what it feels like, because in many ways… it is unspeakable. Even now after many years it is painful to relive the memories and the heartbreak through which we have traveled. It was a sometimes barren and forbidding landscape. The daily heartbreak alone, as it accumulates, is enough to destroy you. I have shared the unvarnished truth of our experience. Why We are Sharing Our Story. Of course, I don’t know why you are reading this book. Maybe you are just curious. Maybe you have had a similar journey in life. Maybe you are now facing a journey down a sudden road that you never planned to travel. Maybe it is you or your child, or a dear relative, or someone you love, that has entered into this new and perilous, unexpected world. It’s going to be a long, long and difficult journey. How can you hang in there? I do know why I am sharing our story. I want to help others. Maybe you are that one person who will be helped. If sharing our story and how we survived helps you, or someone you know, then I can say, “Hurray! It was worth the pain of reliving it! “ In the process of writing this book, I have shared it with many other people. Some of them knew us and some didn’t. Everywhere we go we find someone who has a need and we share our story with them and send them copies of the book in progress and they were touched and comforted and encouraged. We do rejoice in that. I have received a lot of feedback and suggestions. A number of people were curious as to the depth and breadth of our daily routine in caring for Jessica. Without belaboring the point, but to satisfy your curiosity, here is what we are dealing with daily. Our Daily Routine. Read more…
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A Major Surgery… the Confirmation of Love.
A major surgery… the confirmation of love. I walked slowly up the four flights of stairs, on my way to the pediatric critical care ward. Entering the shiny double doors, I paused to scrub up with disinfectant at the sink, and then made my way to the back corner room that had been Jessica’s home for the last 10 days. The curtain door was closed. There must be something going on I thought, as I quickened my pace. Quietly and slowly opening the door, I looked expectantly towards Jessica’s bed. Dr. Forester, stethoscope to her ears, looked up and smiled absentmindedly as she leaned over Jessica, carefully listening to her heart. Just a routine check-up I thought with relief, as the monitoring equipment attached to Jessica beeped rapidly in the background. I looked at Jessica lying there, with tubes and wires coming out all over her body, and a respirator covering her face and nose to help her breathe. Our eyes met. “Hi Jessica!” I said cheerfully. “How’s my girl?” As I reached out, and took her small delicate fingers in my hand, a thought came rushing back from the past, “…look, she has the hands of a pianist. She’s going to grow up to be a great concert pianist!” “That’s remarkable… just remarkable!” Doctor Forester exclaimed, interrupting my thoughts, as the insistent beeping rapidly declined, followed by a plummeting of Jessica’s vital sign numbers. I looked up and watched them tracing themselves in green, on the monitor. “Jessica sure knows her daddy! That really is remarkable!” the doctor finished. Surprised at her comments, I looked at Dr. Forester. She was looking at me in amazement, a broad smile on her youthful face. Stalled in the Critical Infant Care Unit. (CICU) We had met Dr. Forester as a part of the brilliant surgical team, that had operated on Jessica. Her speciality is ‘Pediatric Cardiology.’ That’s a ‘heart doctor for little kids.’ We liked her almost immediately and the tender way that she interacted with Jessica. She was a young, but excellent doctor, now doing follow up in the hospital. Jessica was recovering from major surgery. One of the physical ailments that comes with the territory, when you have a developmentally delayed child, is something called ‘scoliosis’ of the spine. Read more…
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An Amazing Dream… a Taste of the Future.
An amazing dream… a taste of the future. Ron reached out cautiously to his sleeping daughter Kacey, and wondered about her breathing. It seemed non-existent and he couldn’t see any movement. None. Feeling slightly alarmed, he shook her gently and then harder. She awoke with a start! “Thanks, daddy, for waking me up,” Kacey, said groggily. “I was having a bad dream. Well, not really a bad dream, but…” she hesitated. Heart, Mind & Soul. We all know of at least a few things that we have in common. For instance, a body, a mind and a spirit or soul or as the Bible says “…heart, mind and soul…” Of course we do. What about a child like Jessica? What does she have, you might ask, or at least think? She is compromised. You know, ‘handicapped,’ so, isn’t she just an empty shell? I will admit, that these questions are faced at some point, by every parent who finds themselves in our position. Especially in our sometimes prevalent ‘throw-away’ society. We have all been exposed to those who say, “Don’t like that thing, just throw it away.”or“Are those older relatives a pain in the neck? Just, cast them off!” “Don’t want that unborn baby? Just throw its life away.” And, on and on. So, you can imagine the ‘looks’ and the ‘comments’ that come our way. Comments like, “We could easily terminate this pregnancy,” or “You two deserve your time together, without this burden,” or “We could have her institutionalized. You know, so you could be free!” Sometimes the odd looks we get, say it all. More Than Meets the Eye. People who don’t know her, look at Jessica. She is a rather petite little girl who cannot speak or sing, walk, run or jump or play. She can’t stand or feed herself or scratch her curly, black hair covered head but they can’t see her mind or her soul, and believe me, they are there. She is temporarily trapped in a tough physical condition, but, there is much more to her than meets the eye. I sometimes watch Jessica as she is sleeping and I watch her dreaming. I know she is dreaming, because I can see her eyes moving under her eyelids, and some slight movements in her extremities. The expression on her face will change. Read more…
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The Laugh that Shook the Earth, Part 2
The Laugh that Shook the Earth, Part 2 After things were finally settled with the Department of Justice, we were able to purchase a new handicapped equipped van, and we decided to take a long trip to unwind and celebrate. So Renée, Jessica and I packed up and headed out, leaving our kids, Jamie and Jon in charge of everything at home. We went East. The Big Birthday Surprise. At that time, I was the Director of the All American Soap Box Derby in Boise, and I needed to haul the winning cars from our local race to Akron, Ohio for the World Championships. Then it was on to Watkins Glen, New York, to find Renée’s long lost relatives. After that, to the Florida panhandle to visit my sister Yvonne who was in poor health, and also to rendezvous with my Mom, Jamie and Jon, for a surprise ‘Birthday Party’ for Renée and Jessica (Renée had no idea!) on August 25th. On the drive home, another precious moment came our way. ‘A Whole Lotta Shaking…’ We had been traveling around the Grand Canyon as we headed for home, taking the scenic route through Utah’s rugged and unique Zion National Park. As we drove along in the gathering sunset, we hesitated at the entrance to the lodge grounds and camping area. Should we pull in and spend the night or push on? As Renée steered the van around the winding road perched on a hill side, I looked at Jessica. She looked happy and content, looking quietly out at the scenery. “Let’s keep going,” I said. “There’s a ‘rest stop’ when we get to the freeway and we can spend the night there.” When we reached the rest stop, we made our bed in the van, and placed Jessica between us. As we lay there I just impulsively reached out and stroked her chin. As she turned to look at me, she began to giggle and then laugh out loud! A beautiful, musical, gurgling laugh, like the sound of a little brook happily rushing along. It was infectious and we both laughed with her, and the sound of a thousand angels couldn’t have been any sweeter! It was the first time we had heard her laugh like that and we didn’t want it to stop. Later as I dozed off, I could still hear it in my head. Read more…
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The Laugh… That Shook the Earth.
The laugh that shook the Earth. Renée and I went home from court that sunny spring day in May with our hearts full of joy and relief. The battle was over, or so we thought, and we could see nothing but clear sailing ahead. Once again we were naive in our understanding of dealing with the bureaucracy of the United States Department of Justice. I am not a lawyer, but from my experience in dealing with the legal system, I would have to assume, that on their first day at Law School in ‘How to be a Lawyer 101’ or something, the very first principle covered must be, ‘how to delay and obstruct.’ Much to our amazement, even though the Judge ruled that day from the bench, and gave them 90 days to settle our claim, the process had dragged on for nearly a year after that point, with practically no end in site. Determined to Win. Finally, in May 1992, at our wits end, we decided to ‘go on the warpath’… so to speak. We jumped into the battle to fight for Jessica, one more time. This time I was determined to seek complete and absolute victory. I turned to Idaho Senator Larry Craig for help. I sat down and wrote him a long letter detailing our frustrations and the run arounds on top of run arounds we were wading through. I mailed it via registered mail to his office in Boise and waited. A week went by and nothing. No phone calls, no letters. And so, I called his administrative assistant, to seek an answer. Moving Heaven & Earth. Another small miracle happened that day. When the Senator’s Assistant finally answered my call… he was holding my letter in his hands, when he answered the phone! “Yes. He was on it,” he said, “and he would get to the bottom of it if he had to move heaven and earth.” I had to smile at that comment, but later it got even better. Larry Craig’s assistant called back later and said he and Senator Craig “Had rattled some cages in Washington D.C.”…as he put it. He did happen to mention to me the name of the actuarial firm and the representative working on our case. Just a few names, nothing else, but as it turned out, an invaluable bit of information. Read more…
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Our ‘Personal Crusade’ Begins… the Trial.
Preparing for ‘Our Crusade.’ After obtaining all of the details about the ‘Vaccine Injury Act’ we were ready to begin. Remember, this is before the internet, and there were no handy websites to help us. Today there are many resources available through the ‘world-wide-web,’ as well as books and guides. We knew one thing for sure. We needed to find a lawyer… a good one to help us with the fairly complex procedures and documents we would have to submit. I began to ask around and find someone who would take up ‘our crusade.’ I mentioned this to a co-worker who immediately said, “I know just the guy. He goes to my church. His name is Robert Aldridge.” I thought, ‘another Robert,’ remembering Dr. Robert Burton, who our working with had always been a delight. It’s intriguing to me, that if you look up the meaning of the name ‘Robert,’it literally means ‘bright fame.’ So far it had worked out very well, and so I called and scheduled an appointment. Another ‘Jessica adventure’ was about to begin. One that would become very, very important for our future. We were starting to see some light at the end of our tunnel. The entire ‘Vaccine Injury Act’ thing, seemed like a fairly straight forward process. “Surely this can’t take very long,” I had said to Renée confidently… …boy was I wrong! Our Day in Court…at Last! One and a half years later, I sat in the courtroom, nervously fidgeting with my pad and pen, as the Judge began to speak, “I am going to rule on this case right now without further delay.” My heart was in my throat. It was May 21, 1991. We had just concluded our case after many, many months of battles and twists and turns, as we struggled against the United States Department of Justice, to prove our case. I had done all of my own research and helped our lawyer prepare our case. We had a unique situation. We had been in the same location and had maintained the continuity of our medical care. All of the doctors and medical records were readily available, and over the years, we had been exhaustive in our elimination of other possible causes. Our Case was Too Good! That was exactly the problem. Read more…
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Unexpected Help… the ‘Vaccine Injury Act.’
A Fateful Discovery. I recently heard a joke about a lady who was praying to God to help her win the lottery to solve her financial problems. Each week she would plead with Him to let her win, but nothing happened. This went on, week after week, while she slowly lost everything. She lost her furniture, she lost her car, her house was in foreclosure, and so on. Finally in utter dismay, unable to hide her bitter disappointment, she cried out… “Please tell me God, why have you forsaken me?” Suddenly the heavens parted and a bright light beamed down on her, and the voice of God answered, “Please help me out here lady, and go buy a ticket!” I really don’t think that God condones gambling or putting a lot of faith in such ventures, but I can relate to that funny story because I think it underscores the idea, that to solve our problems we have to be paying attention, and ready to do our part . I am thankful that Renée was paying attention one day in the summer of 1989. She was looking at our mail that day, when she noticed a small article in a Health Department newsletter we were receiving monthly. It was entitled, ‘The Vaccine Injury Act of 1986.’ I had glanced at it earlier, but I hadn’t taken the time to read it. She did. “Look at this,” she said excitedly, “…there is some kind of a law that helps families who have a child that has been injured by a vaccination. Wouldn’t that be us?” she finished. A Shocking Fact. I must admit, I was pretty skeptical, but I picked it up and began to read. It seems that there had been a case in Twin Falls, Idaho, that had resulted in a class action law suit. In this case, a small boy who received his DPT vaccinations in the Fall of 1978… I sat bolt upright, with my mind racing! Renée was absolutely correct. It had been the fall of 1978 when Jessica’s problems began, the same as the boy in Twin Falls, and hadn’t our neurologist, Dr. Burton, said something about being an expert witness in a case similar to Jessica’s in Twin Falls? I concluded it must be the same case mentioned in the article. Read more…
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The Photographer from Afar.
The photographer from afar… a smile. “Mr. Walker,” said the eager young voice on the phone. “I am working on a story about how you and your neighbors banded together and removed the snow from your street and uh… I was wondering if you would be willing to be interviewed. You know, for the article?” she finished, sounding hopeful. I turned this new information over in my mind. Was this for real? “Are you kidding me? Is this a joke?” I finally said. “I’m sorry Mr. Walker. I am calling from the Idaho Statesman newsroom,” she said, sounding embarrassed, “I am an assistant reporter on staff, and yes, I really am working on this story for publication.” How odd I thought, that anyone out there would be interested in what seemed like a perfectly logical and mundane thing to do… hmmm. “Well okay,” I said. “Sure.” I was feeling rather amused at the whole idea. This must be that ‘15 minutes of fame’ I keep hearing about. Some ‘expert’ has said that everyone in their lifetime gets their fifteen minutes of fame in the public eye, and I guess I was going to be famous for snow removal! ‘How amazing!’ I thought. And so, I did the interview. Jessica Continuing to Improve. During that same time, Jessica had continued to respond and become much more engaged in her daily life. Sometimes it took the form of protesting angrily and hollering and showing a little temper. On New Years day, She sat up unsupported. Clasping her hands in front of her, and much to our delight, she sat bolt upright, once again looking rather pleased with herself. I am not really sure how the word got around. Maybe it was from our therapist or our nutritionist, but one of the things that Jessica would do from the very beginning was eat well. Therefore we filled her full of every good thing we could, supplementing her pureed diet with vitamins and supplements, and she responded very well. We had her drink from a bottle with a heavy rubber nipple to improve the muscle tone in her lips. We also followed special procedures with her spoon feeding, to train her tongue, to trying to proactively control,the always present choking hazard. Read more…
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The Best Christmas Ever!
The Best Christmas Ever! There was a loud muffled banging at the door. Thump! Thump! Thump! Like the sound of someone wearing heavy gloves. I was wrapping presents on the kitchen table. Jessica was laying in the living room on some warm blankets, a safe distance from the softly burning fire, where she could see the twinkling of the Christmas tree lights. It was the last Sunday before Christmas. That day had dawned crystal clear and was a welcome break from the record snows of the last week. As the day progressed, it had more and more of a Christmas card look and feel. A bright and shiny, sparkly, drippy day. Icicles were forming on the eve’s of our house and the snow softened everything, and by contrast made the sky look incredibly blue. It was a diamond of a day but the real beauty was yet to come. I opened the door, and there stood two of my neighbors. In the background I could hear the staccato ‘bruup… burrp’ of a heavy tractor somewhere near. The snow had made our side streets, including the one in front of our house, a quagmire. Leaving and arriving was a daily adventure and someone usually needed a little help to get away from the curb and underway. Earlier, Renée and the kids had barely been able to pull away to go shopping. My neighbors had a proposal. Would I be willing to join everyone else on the block and chip in $20 for gas? My neighbor Ed would then use his back-loader to scoop all of the snow off of our street and we could have some relief. The main roads were plowed and sanded regularly by the city crews but due to the immensity of the snow, all side streets were a ‘no man’s land.’ Thinking about Renée slipping and sliding that very morning, I quickly agreed. Something Seemed Different. I turned to head back into the kitchen… hmmm… was it my imagination or had Jessica shifted her position? Naaah! She couldn’t have moved, I thought, as I went back to my wrapping, humming ‘White Christmas’ in time with the stereo. I was so sure, because Jessica was in what we now call her ‘pet rock’ stage. You know. You could put her down and that’s exactly where she would be anytime later. 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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