-
Staggering Forward… the Impact on Our Family.
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…
-
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…
-
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…
-
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…
-
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…
-
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…
-
Our Marathon Begins.
A Race that Can Kill. The word ‘marathon’ comes from the story of a Greek warrior who ran home from the battlefield, over 26 miles, to bring the message of victory. After delivering the victorious news, so the story goes, he collapsed and died on the spot. So I guess the race itself can kill. We didn’t really know or understand that we were entering into our very own personal marathon. The difference was that we were looking for ‘victory,’ not singing its praises. The days leading up to our appointment at the Boise Neuro Clinic, passed in a blur of both excitement and anticipation. It was good to be moving forward, to be hopeful that life would become normal once again and all would, or at least could, be well again. Having never faced anything as forbiddingly unknown as we now faced, I think Renée and I had kind of an optimistic faith in modern medicine to cure anything that came our way. Doctors and other medical experts were up there on the pedestal of ‘All- knowing and all powerful,’ and there was nothing they couldn’t cure. We Began our ‘Ultimate’ Commitment. The legendary football coach Vince Lombardi, once said, “…fatigue makes cowards of us all.” Why did he say that? I suspect he was looking for a greater commitment from his players. He wanted them to work hard in the weight room and improve their conditioning, far from the adoring crowds. He got it. If you are committed you will make better choices. And those choices will augment your commitment. We all have a free will. Our will is something we all struggle to control. Sometimes we do the very things we shouldn’t. We have that second piece of pie. We skip our exercise. We drive too fast. And the list goes on. To make an ‘ultimate commitment’ as a caregiver, is very hard. We hesitate because we know it involves… work! And with the kind of deep commitment needed, there is no going back. Seriously, there is nothing wishy-washy about that kind of commitment. An ‘Ultimate Commitment’ Will Make the Difference. You must choose to commit yourself to the afflicted person, whether it be your spouse, your friend or in our case our baby girl. You are committing to never leave them or forsake them. To never give up on them… ever. Read more…
-
A Small Miracle.
‘Hello Jessica-Land’ Early the next week, following the events on that traumatic Friday, our phone rang. Renée answered. “Hello, Mrs. Walker, this is the Boise Neuro Clinic calling…” the voice said, “…due to a cancellation, we have an opening sooner than we expected.” In amazement, Renée struggled to respond. When we had left the doctor’s office on Friday, December 29, the crisp winter air felt just a little colder, the wind more penetrating, and the night darker than it had ever been. We were full of uncertainty, the unknown was looming, and our little world was sailing into an ever widening orbit. We were struggling with our emotions and doubts and the uncertainty of the situation… ‘What was wrong?’ ‘Would Jessica be okay?’ ‘Why was this happening?’ Our hearts were full of fear and uncertainty that night, as we returned home emotionally spent. Renée and I agreed, as we talked it over, that waiting for three or maybe as long as six months would be exquisite torture. The four hour wait we had just endured in the doctor’s waiting room had seemed like an eternity. How would we ever stand it? I remember the feeling of my fear of the unknown. It was so tangible, I could feel it pressing down on us. We turned to Our Faith in God. Our faith had grown from the first week of our married life thirteen years before, as we started reading the Bible together every night. We weren’t very sophisticated about it. We just started at the front and read all the way to the back. When we had arrived home that day, we had spent a lot of time on the phone sharing with our little network of friends and we asked them all to pray for us. We needed to see the neurologist now! That was the essence of our prayer request and the word went out, and many people began to pray for us. “I know this is short notice,” the calm voice continued, “…but could you come this Wednesday morning?” …she paused, waiting for a response. Renée still couldn’t believe her ears. “You mean this week? …this Wednesday?” She finally said breathlessly. “Yes. Is that too soon?” said the voice. “NO! We’ll be there,” Renée answered, “We WILL be there!” Welcome to ‘Jessica-land.’ Renée hung up the phone in stunned silence. Read more…
-
Commitment… Never Giving Up.
“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…
-
My Moment of Truth.
“Listen to me Doctor…” I had blocked the only exit from the room, our faces were inches apart, our eyes locked. My frustration welled up from my heart. I began to speak. “Listen to me doctor, we are not panicky parents! As you know, we have two other children. We have seen a lot, and been through sickness with them, and I am telling you, there is something terribly wrong… with Jessica!” In my mind I flinched at those words. I had finally said it. My heart dropped to my feet. “You were not there,” I doggedly continued. “…you did not see what I just saw. It was not pretty. It was the worst thing I have ever seen!” Doctors & Plumbers. Looking back now I should have asked for a second opinion. I should have asked for that at the very beginning. When we first spotted the trouble. When we first began to keep our log. We were concerned, but trusted too much the doctor’s advice about Jessica’s strange behavior. Some old wise-guy once said, “…doctors are like plumbers, some are artists and do great work, others, well… their pipes leak.” Wise advice. Somethings can not be undone. You can not ‘un-ring the bell,’ but you will be living with the consequences. Maybe for the rest of your life. My advice to you. Don’t hesitate to get a second or third opinion when you are concerned about your life or the life of some helpless person under your care. You are responsible, not the doctor. They will not come out to your house for the rest of your life and help you. You are on your own. Be careful and choose wisely. The Mystery Begins… I passionately continued, “I don’t have a word to describe it. I don’t know what it is, but… there is something very wrong with this kid!” The pain I was feeling in my heart at that statement, was unbearable. I waited in silence for a reply from the doctor, who stood frozen in his tracks, his hand still reaching for the door. The doctor stepped back. He was watching my face carefully. A sigh, a shrug and then with a condescending tone to his voice he said, “Okay. Read more…
Blog
Our Books
-
Growing Up with Jessica
$15.99
-
Lessons from Jessica
$15.99
-
Prayers from Jessica
$15.99
