Danny's headaches became more and more frequent. By May of 1977, in addition to the headaches, he was always fatigued, didn't want to play with his toys or even go outside. It seemed that all he wanted to do wassleep. During those eight months, I had made numerous trips to the
pediatrician and each time I was assured that Danny was fine but I knew,
in my heart, that something was terribly wrong.
On the morning of May 19, 1977, Danny again complained of having a headache and then suddenly threw up. I called the pediatrician and told him that I was bringing Danny in immediately. This time when the doctor examined Danny, he found pressure behind Danny's eyes. This meant that something in his brain was pressing against the optic nerves causing the pressure. Our pediatrician made an appointment with a neurologist for the next day. After the neurologist examined Danny, she spoke with me and my husband and told us that there was a very good chance that Danny had a brain tumor...a brain tumor, how could this be! Danny was the picture of health, he just had headaches and stomach aches. A brain tumor, the words seemed to echo through my head. Surly, there must be another explanation but there wasn't.
Danny was immediately admitted to Children's Hospital. That same night, May 20, 1977, after undergoing skull x-rays, more neurological tests, and an electroencephalogram the neurologist's suspicions were confirmed. Danny did, indeed, have a brain tumor. We were able to see it on the x-rays. Now a neurosurgeon needed to be called in. After going over the test results, he told us that he felt that Danny had a benign pituitary tumor called a crainiophryngioma but he couldn't be sure until the actual surgery was done and the tumor could be examined. He explained that this type of tumor is very difficult to excise because of it's location...at the base of the brain and on top of the hypothalamus gland. In addition to the location, the tumor tends to adhere to the brain much like "bubble gum to the seat of your pants." He then proceeded to list all of the possible complications that might occur during or after the surgery. The list seemed endless and included everything from the loss of the sense of smell to death. As frightening as all of this was, we didn't have any choice because without the surgery Danny would surely die. On May 30, 1977 Danny was taken into the operating room at 7:00 AM. He was in surgery until about 4:00 PM...nine very long hours...and he came through the operation beautifully. The neurosurgeon was almost positive that he had gotten all of the tumor and he confirmed that it was a craniophryngioma. That night when we finally were able to see Danny, the first thing he said to me was, "Is it time for supper yet?". It was my Danny, all right, hungry and sharp as a tack! I felt indescribable relief. He had made it. The next day we found Danny sitting up in his bed in the Pediatric Intensive Care Unit, drinking chocolate milk and talking up a storm. Even his doctors were amazed at how well he was doing but our elation was short lived. The second day after surgery, June 1, Danny had a hypothalamic storm...his brain was swelling and reacting violently to the surgery. Danny's temperature shot up to 107 degrees and the doctors were unable to bring it down. He had grand mal seizures and lapsed into a coma. The next time we saw him, he had tubes and monitors sticking out of every part of his body. We couldn't believe that this was happening. Yesterday he was fine and now he was in a coma. We didn't even know if Danny would survive.
One week after his surgery, Danny had to be taken back into the operating room because of a spinal fluid accumulation on the right side of his head. The doctor put a quarter-sized hole in Danny's skull just above his right ear, hoping that this would help the spinal fluid to recirculate on it's own...it didn't work. A week later, on June 10, Danny had surgery for the third time in three weeks. This time the neurosurgeon put a shunt into the right ventricle of Danny's brain to drain the spinal fluid. The shunt worked and the fluid accumulation gradually decreased. Throughout all of this, Danny remained in a coma. His eyes were open, he never blinked, he just stared blankly. The only thing he reacted to was pain.Danny was in a coma a total of about six weeks and it was touch and go more than a few times but the worst came the night before Father's Day in June, 1977. That's the night that Danny had a stroke. When the neurosurgeon came out of intensive care to talk to us, he told us that he did not expect Danny to live through the night. He said that Danny had had a stroke on the left side of his brain, his blood pressure and heart rate were extremely high and he felt that Danny would go into cardiac arrest and die. I don't think I have ever prayed so hard in my life.
The next morning, to everyone's amazement,
Danny was still alive...in a coma but alive!
Ever since the surgery on May 30, my husband and I had literally lived at the hospital. We slept on the couches in the intensive care waiting room, bathed in the patient's bath down the hall and ate in the employees' cafeteria. We went in to see Danny as often as they would allow. We read books to him and held them up so he could 'see' the pictures, we talked to him about his brothers, his dog, anything and everything we could think of that might be of interest to Danny. We got permission to bring a small, portable television into intensive care and set it up next to his bed so he could 'see' and 'hear' it. We even brought a T.V. Guide Magazine to the intensive care unit. I circled the programs Danny liked to watch, so the nurses would know which channels to turn to. I made a bargain with the nurse...they could put their favorite soap opera on the T.V. if they would promise to read books to Danny when we couldn't be in with him.
We were doing everything we could to keep Danny
from slipping deeper into the coma.
No one could tell us if Danny could see or hear us but I had always heard that hearing was the last sense that we lose and I was praying that this was true. I treated him as if he could both see and hear. I let him know that I expected him to get well and that he had to work at getting better. Day after day I would sit with Danny and try to get him to feed himself a piece of crushed ice from a spoon. I would put the spoon in his hand and hold his hand with my own, then I put the piece of ice on the spoon and gently bring it up to his mouth. At first, he didn't even open his mouth but gradually he began to respond and would open his mouth. Finally, we had a wonderful break through. One day I was helping Danny feed himself ice, just like I had been doing everyday, and as I began to move the spoon towards his mouth, I felt his hand move. It was very slight but he was trying. We continued our daily exercise and it wasn't long before Danny could hold the spoon and bring the ice to his mouth with little help from me. He was very shaky but that didn't matter. From there we went on to learning how to drink through a straw and then from a cup. Danny was slowly coming out of the coma!
On July 21, 1977 all of the IV's were removed and Danny was allowed to ride in a wheel chair. He had to be tied in because he couldn't sit up by himself but that was of no concern to us. Danny was out of a bed for the first time since May 29 and that's all that mattered. The next day the feeding tube was removed and Danny was started on baby food...he loved it! Two days later the catheter came out. Danny was now tube and wire free for the first time since his surgery on May 30. By July 31, Danny was walking with the support of some one on each side of him and he smiled for the first time since June 1. That's when I knew that my Danny was still in there. After 61 days he left the intensive care unit and was moved to a private room.On August 10 he was transferred to the rehabilitation unit so that he could begin therapy. He needed speech therapy because the stroke left Danny aphasic. The speech center of his brain was damaged and he couldn't speak or understand speech. Physical therapy was necessary to strengthen his muscles. Due to the amount of time that Danny was bedridden and the stroke, all of his muscles were extremely weak and his balance and coordination had been impaired. He received occupational therapy because he had lost the use of his right hand as a result of the stroke. He wasn't able to even grasp an object. Now he had to learn to use that hand again.
After almost four months of hospitalization, Danny was discharged from Children's Hospital on September 17, 1977. Unfortunately, this was not the end of doctors, hospitals, shots, tests, etc. for Danny. In fact, it never ended. Danny had to be watched and checked for the rest of his life. He had a number of problems as a result of the surgery, the high fever, and the stroke. He had lost the sense of smell on the right side, he had lost the peripheral vision in his right eye and was extremely nearsighted...even glasses were not of much help. Danny, also, contracted Hepatitis C from his many blood transfusions but due to his multiple health problems he was not a candidate for treatment.
Following the surgery there was an almost complete personality change. Before all of this, Danny was very loving and gentle but now at times, because of the brain damage, he became extremely agitated and sometimes even violent. He could be a danger to himself and had to be watched closely. Due to the brain damage caused by the stroke and other complications, Danny was left both mentally and physically disabled. His disability was catagorize as severe. His balance and coordination were impaired. Danny had to take cortisone and thyroid hormones because he either didn't produce enough or none at all. He had diabetes insipidus which required injections of an anti-diuretic about every 48 hours. The satiation center of Danny's brain was damaged causing him to want to eat constantly, because he never felt full. He didn't perspire, so during the summer months he had to be kept indoors or watched closely because his temperature would rise. Danny never produce any growth hormone, yet he grew. The only problem with that was that Danny would gain weight at the same rate at which he was growing. It seemed that the two went hand in hand. His endocrinologist had no explanation for this but eventually his weight became a problem in itself.
For two years following surgery Danny made amazing progress. He learned to speak again and he regained much of the use of his right hand, all in about six months. His speech wasn't perfect but at least he could communicate. Danny had to be toilet trained all over again and that was accomplished by Christmas, 1977. It was the best Christmas gift he could have given me!From October, 1977 to May, 1979 Danny attended a school for the neurologically impaired. Danny did quite well until the beginning of 1979. It was than that the behavioral problems first began to surface. Danny started throwing temper tantrums. At first the tantrums just involved kicking and screaming but they gradually became more destructive and even dangerous. No one could explain the sudden change in personality two years after surgery. Danny began hitting, biting, kicking walls and putting holes in them, banging his head, spitting, and pinching. This behavior began at school but it soon carried over into our home. Most of the time Danny's rages were directed at himself but occasionally he would strike out at someone else. None of this was Danny's fault, it was all due to the brain damage that he had suffered but not everyone, who witnessed his tantrums, knew this or understood. We received many disapproving looks and sometimes even hurtful comments.
By June, 1979 the situation had become so severe that we lived in the fear that Danny might seriously injure himself or someone else. Now he was putting his fists through windows, banging his head on window panes, television screens, and brick walls, throwing drinking glasses, breaking plates over his head and once he even threatened to cut his throat with a steak knife because supper wasn't ready quickly enough for him. There was no such thing as a good night's sleep at our house because Danny wandered all over the house looking for food. We finally made a gate to put across the upstairs hallway near his room. The gate had an electrical buzzer connected to the bottom of it. If the gate was jarred, the buzzer would go off. Even with all of this, Danny occasionally managed to get over the gate and go downstairs without setting off the alarm. His ability to solve problems, such as this, was phenomenal. We put locks on the pantry and all of the kitchen cabinets and tied a rope around the refrigerator to keep Danny out of the food. Meanwhile, his behavior continued to get progressively worse. Finally, we turned to Danny's neurologist. We couldn't allow Danny to go on like this. We had to get help...for Danny and for ourselves! The stress was definitely taking it's toll on me, my husband and our two other sons.The neurologist decided to place Danny in the Rehabilitation Unit of Children's Hospital in New Orleans. This was the first time Danny had ever been separated from us but he took it much better than I did. He thought it was an adventure. I couldn't stand the thought of him being away from home but I reasoned that it would only be for a short time and then Danny would be home to stay. I had no idea that this was only the beginning of a whole new nightmare. Danny remained at Children's Hospital just three months until September 20, 1979. At that time, he was discharged from at the hospital's request because they could not control him. From there he was placed in the Children's unit at Southeast Louisiana Hospital in Mandeville, Louisiana (even farther from home), where he would remain for a year. Danny was 8 years old. I remember packing his suitcase and crying the whole time. I couldn't bear the thought of my little boy being so far away from me. I spent many nights crying and wondering if he was crying for me, too. After a year, the staff at Southeast felt Danny had progressed sufficiently to be discharged from the hospital. Upon his return home, he was placed in a special education class for aphasic children at a local elementary school. I felt that, at last, we would become a 'normal' family once again...and once again I was wrong.
Danny entered the school in October, 1980. He was placed in a class for aphasic children. Six weeks later I received a telephone call from the school's principal. He was calling to inform me that they could not continue to allow Danny to attend the school. They couldn't control him. Danny was stealing other children's bag lunches, punching the children and his teacher, walking out of the classroom, throwing tantrums and trying to run away. I will never forget that phone call. I knew this wasn't Danny's fault, it was the brain damage but I found myself apologizing to the principal for my son's behavior. I managed to stay in control until I hung up and then I just went to pieces. I sat on my kitchen floor and cried and cried. I felt like all hope was lost andour whole world was falling apart.
Danny's case was turned over to the Department of Health & Human Resources for review. My husband and I met with their committee in December of 1980, at which time they recommended that Danny be placed in a state facility for the physically and mentally disabled. Danny was to be placed in a state school! Of course, this would only be until Danny's behavior was under control. It was definitely not a permanent placement. Everyone was sure that Danny would be back home in a year or so. It was to be an emergency placement due to the danger that
Danny posed to himself and others.
That emergency placement didn't take place until April 20, 1981...four months after our meeting with the Department of Health & Human Resources. As much as my husband and I and Danny's brothers loved him, we all realized that we could not continue to live under the present circumstances...and, after all, this was only a temporary placement...Danny would come home as soon as his behavior was better! Again, we were wrong! Eventually, we had to face the fact that Danny would have to spend the rest of his life in a state facility for the mentally disabled...a total of nineteen years.
Danny's health had been slowly deteriorating over the years but by 1998 he was being admitted to the hospital more and more often. For the last ten years of his life, he was confined to a wheel chair. Over the years we had, also, found out that Danny had osteoporosis, severe vascular problems in his legs due to his inactivity. His legs and feet were continually swollen with fluid, he would develop cellulitis in his legs on a regular basis and would have to be admitted to the hospital for treatment. By 1999, his doctors felt certain that Danny had developed cirrhosis of the liver from the Hepatitis C. They, also, warned us that Danny would either develop a blood clot in his legs, from the cellulitis, that would travel to his lungs or that the hepatitis C would continue to destroy his liver...both conditions were extremely serious and possibly fatal. Either way, his prognosis wasn't good. Every hospitalization, brought the fear that this may be the beginning of the end.On February 17, 2000 our fears began to be realized. Danny was admitted to the hospital with cellulitis in his left leg. We weren't really concerned because this had become a recurring condition with Danny. He would go into the hospital, be put on IV antibiotics for a week and then return to school. But this time was different. The results of routine blood work indicated that Danny had blood poisoning. Further tests revealed that he had a cyst in his abdomen that was blocking the tubing of the shunt in his brain. The cyst was drained and it was found to be the source of the septicemia. Danny had to have surgery to externalize the tubing of his shunt, so that the infection would not travel to his brain. He was put on the strongest antibiotics they had and stayed in the hospital for 6 weeks...much of that time in the intensive care unit. After his discharge, Danny went back to school to their Central Clinic so that he could be monitored closely. He seemed to be recovering well but about three weeks later, I was shocked at what I saw. Danny was so weak that could not even hold his head up. I notified his doctor and he was
immediately admitted to the hospital.
They discovered that he had another infection in the shunt and had to have immediate surgery to externalize the shunt again. After the surgery, Danny was sent to ICU again. From that time on his health began to deteriorate. Danny was in and out of consciousness, he had hallucinations, and he wasn't improving despite the strong antibiotics. He was taken back into surgery more than once but still he did not improve. Then one day, Danny told me that a little boy had come to visit him. A few days later, he told me that a little girl came. I assumed that he was hallucinating. A couple of days later he told me that he "was with that baby again". I asked him what baby but he had slipped out of consciousness again. Then he suddenly woke and said, "that baby died!". I asked him,"What baby?" and he replied, "Michelle"...Michelle, his sister who had died before Danny was born! I now realized that Danny had not been hallucinating but was being visited by both his sister, Michelle, and his brother, Jerry...the little boy. I knew that they were with Danny to either comfort him or to prepare him to join them. In my heart, I knew that it was the latter.
Danny had a total of eight surgeries during the 3 months that he was hospitalized and with each one, he became weaker and weaker. It was evident that Danny was not going to survive this but he gave us some extraordinary moments to help prepare and comfort us. Danny, not only talked of his sister and brother but, also, mentioned his Grandfather, who had died too. Then about a week before he died, Danny began telling everyone that he was "going somewhere else". By now, Danny was semi-conscious and having extreme difficulty breathing. He struggled for every breath and it broke my heart to see my son like that. We all knew that the end was near. The doctors kept telling us that Danny wouldn't make it through another night...yet he hung on. On May 27, Danny opened his eyes and for the first time in weeks and I saw recognition there. He looked at me, raised his left arm, put it around my neck, pulled me down to him, cried and said, "I love you, Momma". He did the same with my husband. Then I asked him if he wanted me to call his brothers, Donnie and Darrin and he said yes. While we waited for them to arrive, Danny once again slipped into unconsciousness. Darrin arrived first and when I told Danny that he was there, he opened his eyes and with that same recognition repeated what he had done with my husband and me. He did the same when Donnie got there. As the day wore on and other family members arrived, Danny repeated this again and again...with his Grandmother, his sister-in-law, his Aunt and then his Uncle. I realized that Danny was telling us goodbye. By now, Danny's breathing was so labored that I could barely stand to listen to him. Each breath was a knife through my heart.On Monday, May 29, 2000 at 6:30 PM Danny died due to complications from Hepatitis C and a mal-functioning ventricular shunt but he left us with one last miracle. When Danny passed away his lips turned a pasty white and his mouth was open...something that was very upsetting to me. I wanted to close his mouth, so I kept holding it shut but each time I let go, his jaw would open again. Frustrated, I finally, buried my face in Danny's shoulder and cried but when I looked at his face again his mouth was closed! Not only was it closed but there was the slightest hint of a smile there and his lips were no longer white...they were pink! Then someone in the room said, "Look at him, he's glowing"! There was a beautiful, golden glow all around Danny...it was coming from inside of him and radiating outward. Everyone in the room, about eight people, saw this glow. It wasn't our imagination...it was real! It didn't last long but it was definitely there. Now Danny looked absolutely angelic. There was no hint of the struggle he had been through. He never took on the pallor of death. Even three days later when we went to say our last goodbyes before he was cremated, his skin color was as natural as mine, his lips were still pink, his skin soft to the touch, and his hair had taken on a completely different texture...it had always been coarse but now it was soft as silk. It was evident that he was now at peace.
My husband and I realized long ago that, because of his many medical problems, Danny would not outlive us. We thought that we were prepared for his death but how can anyone ever be truly prepared for the death of their child. Sometimes, during those 23 years, I would think that maybe it would have been better if God would have taken Danny on June 1, 1977. I'd look at the life he had and it would break my heart to know that my little boy would never have the chance to go to school, graduate, date, go to the prom, go to college, have a job, get married, or have a family of his own. I'd see him in his wheel chair and wonder what might have been. I learned that there are things worse than death and watching Danny slowly deteriorate was one of them. Those 23 years were both physically and emotionally draining for everyone but had it not been for those years we would never have had the chance to know and love Danny or to receive his love in return.Danny loved life...every moment of it! He was always smiling, always happy, in spite of his circumstances. He was my ray of sunshine. He lived those six short years, before the surgery, to the fullest but much of that Danny was lost. The surgery and ensuing complications robbed us and Danny of that but that never stopped him from living every minute of his life to the fullest. Even though he could never make his mark in this world by physical or intellectual achievements, Danny still had so much to offer. He taught so many so much. When you encountered Danny, you met a pure and gentle heart filled with unconditional love. It seemed that no matter where we went, someone knew Danny. People that I had never met, would come up to Danny to say "hello". His loving and gentle nature could melt the coldest of hearts and his smile would brighten the worst of days. He loved to draw hearts...big red crayon hearts signed with the only words that he ever knew how to write..."I Love You, Danny" and he gave them to everyone he met.
Danny touched so many lives during his short lifetime...more than most of us ever will. He left his footprints on many hearts. Danny, also, left a rich legacy. A legacy of unconditional love that he gave as freely as he gave those red crayon hearts and the best way that we can memorialize Danny is to continue to pass that love on to others, just as he would have done. Danny will live on forever in the hearts of all who knew him. We were blessed to have him for 29 years. My head knows that he is in a better place but my heart aches to hold him just one more time. He was a beautiful, innocent soul while he was here on earth. Surely, he is now one of heaven's "Special Angels"!
