PRELUDE:

Despite my advanced age when Robbie was conceived (almost 40), he was born healthy---and big! He weighed 9 lbs. 10 oz. and was 22 inches long. For all his life, he remained at the top of the charts for height. He was a little over 6' 1" when he died at 16, so I think he would still have had some growing left in him.

He was a happy, healthy, active baby--always interested in everything. His older sister, Laura, was only 7 months older than he was (we adopted her the same day we learned Robbie was on his way!), so they were always close playmates. They often fought, too, as siblings do!

We knew he was very bright, but were surprised when his achievement tests in the first grade revealed that he was in the top 95-98% of all kids in the country in every subject. And this was despite the fact that he tended to be an "active" kid, one who found it difficult to sit still for very long.

So, when both his grades and his behavior began slipping early in the 2nd grade, we didn't know what to think----nor did his teachers or doctors. For several years, we went back and forth to many different doctors, even psychiatrists, trying to find out why a happy, sunny intelligent boy was suddenly always in trouble and always having difficulty in school. In the spring of 2nd grade, his test scores on the same test as the previous year plummeted to about the 20th percentile. We were dumbfounded.

For the next couple of years, despite our seeking help from every source we knew of, he continued to have many problems, both academically and socially. Around November in the 4th grade, he began having seizures and was rushed to our local hospital. When they could not control the seizures, they sent him by ambulance to a Wichita hospital, about 150 miles east.

There an MRI revealed damage to the left temporal lobe of his brain, the site in the brain that controls language (reading) and emotions. The doctor at that time incorrectly assessed the damage as having come from a stroke. Robbie was put on an anti-seizure medicine and sent home.

Over the next year, he continued to have an outbreak of multiple seizures about one week out of every four weeks. His seizures were not the "grand mal" type; sometimes people could be right next to him and not realize that he was having a seizure at all. His eyes would go blank and staring; his left eye would blink rapidly; his hand would curve up over his head; and his mouth might move with either no sounds or slight, moaning sounds coming out of it. Each seizure would last about half a minute to two minutes in duration, and sometimes he would have seizures as often as every 10 minutes, around the clock, waking or sleeping.

When we could see no improvement in his situation after almost a year's time, we took him to New York City for further tests. The doctors there did another MRI and determined that the cause of his seizures was a cyst in his left temporal lobe. He underwent a series of three brain surgeries in December, 1994, to remove the cyst and a small portion of his brain. The hope was that the seizures would then stop.

The seizures did NOT stop, but continued as before, and Robbie now had an extreme learning problem, as the surgery had destroyed the part of his brain that knew how to read. He had to painstakingly learn to read all over again, at the age of 11, starting with recognizing the letters of the alphabet. His short-term memory had also been affected, which made learning even more frustrating. The frustration he felt undoubtedly continued to affect his behavior, which continued to be a problem.

But, with the help of devoted teachers in the Special Education program, Robbie slowly began to re-learn all that he had lost. Progress was slow at first, but soon picked up. By the time he died, he was in the 10th grade and had progressed from not being able to even recognize the alphabet to reading about a 7th grade level. He was especially proud of the fact that he was making a B+ average in a "regular" math class.

With the help of a different neurologist, we began reducing the number and amounts of the medicines Robbie had been put on over the years, and the results were astounding! During the last 18 months of his life, Robbie had far fewer seizures, and often went 3 or 4 months at a time without a single seizure. His personality returned to the sunny disposition he had had as a young child, and he was a delight to be around.

Then came March 11, 2000, and he came down with a bad case of the stomach flu. The fever from the flu soon sent him into seizures, the first he had had in several months. We were concerned, but not worried. He always had seizures when he had a fever. In a few days, the worst of the flu was over and the seizures began to diminish both in number and intensity. We anticipated that he would soon be well enough to go back to school.


MARCH 14, 2000:

Robbie awoke with an appetite! After 4 days of not being able to keep much of anything down, he was ravenously hungry. We celebrated by making his favorite breakfast--pancakes. He ate several stacks of them, washed down with a couple of glasses of milk.

At lunchtime, I went out and bought him his favorite sandwich, a chicken breast sandwich from Arby's, along with fries and a Dr. Pepper. And for dinner, I made his all-time favorite--barbecued brisket, with mashed potatoes and green peas. He went back for seconds, thirds, and fourths on the brisket. He was definitely over the flu!

He was still having some seizures, though not so many nor so frequently, and I could tell that he was very tired, not having gotten much sleep in the previous four nights, so I told him that I would not send him back to school the next day, but let him rest in bed one more day. He was in and out of bed the rest of the evening, playing with his video games, watching TV, or working on one of his many collections.

About 11:00 PM, I headed for bed. As I passed Robbie's room, I saw that he was still awake, working on his coin collection, which he had spread all over his bed. I looked in and smiled, and told him not to stay up too late. I told him I would let him sleep late the next morning. I gave him a hug and then headed for bed.

I set my alarm for 8:00 AM, as I knew I would need to call the high school office and let them know that he would not yet be returning. My husband would be up and gone long before that time, and my daughter Laura was spending the night with a friend. I had a bad cold and had not been sleeping well ever since Robbie got the flu, so I knew that I would need to sleep in, as well.


MARCH 15, 2000:

My alarm went off right on schedule, and I groggily turned it off and telephoned the high school to tell them that Robbie was still having seizures and would not be in. Then I turned over and went back to sleep.

The phone woke me at 9:30 AM. It was my husband, calling from work to see how Robbie was doing this morning. "I just woke up," I said, "But I'll go check on him."

His bedroom is just across the hall from ours, but we all sleep with our doors closed. I opened his door and glanced in, but he was not in his bed. "He must be in the kitchen or the living room," I thought to myself and walked down the hall. But he was not there, either. I got a little upset with him, thinking that he must have gone down to the basement to play with the model trains or the computer---he wasn't supposed to go down the stairs when he was having seizures, as he might fall. But when I opened the door to the basement, I could see that it was dark; he wasn't there.

I begin to panic a little---could he have gone outside for some unknown reason? I began running through the house, loudly calling his name. There was no answer. I could see that the front door was still locked--he couldn't have gone outside. Where could he be? In confusion, I went back to his room and this time ran all the way in.

I hadn't seen him before, because he was lying on the floor, directly beside his bed, and he had been hidden by the other furniture in the room. I smiled and thought, "My goodness sakes, he's fallen out of bed and he's still sleeping right where he fell." I went over to him to rouse him. That's when my heart stopped.

He was in a terribly awkward position, and his face and body color did not look right--his skin was bluish and mottled. I really panicked and called his name loudly. I shook him, but he was stiff and totally unresponsive. I lifted his face and could not feel him breathing. I began screaming his name and shaking him, trying to rouse him.

In a total panic, I ran back to the phone where Hamp was still waiting on the line. I screamed that Robbie did not seem to be breathing. Hamp told me to calm down and to call 911; he said he would be home just as fast as he could. (His office is 15 miles out of town.)

When I called 911, I know I must have been hysterical. The woman on the other end tried to calm me down, and she had me go back again and check to see if he was breathing. He was not. I wish I had just stayed with him, because when I went back to the phone, she kept talking to me, trying, I guess, to calm me until the emergency medical team could arrive.

When they did arrive, I ran to the door to let them in and showed them the way to Robbie's room. They immediately began CPR on him, but it had no effect. They attempted to intubate him, but had great difficulty in getting the tube down his throat. About this time, my husband arrived home, and the team began loading Robbie onto a stretcher to take him to the hospital.

I know I was in shock, for I still thought there was hope. Only weeks later did I realize why the nurse showed us into the small chapel room to wait, rather than the public waiting room. I have no idea of the correct timing for the next hour or so. Friends from church showed up, and I didn't even know how they knew to come. (Later I realized that the nurse had asked who our minister was, and she must have called the church.)

When Robbie's doctor, who is also a personal friend, came in, I was totally unprepared for what he told us. "Robbie is no longer with us," he said quietly. I remember moaning and falling forward, but nothing else for a very long time. I thank God for those dear friends who were there, who hugged us and comforted us. Our pastor and his wife were out of town, but the church secretary said she would call them. (They cut short their vacation and returned to town immediately.) I realize now that God mercifully numbs our minds so that we won't feel the full import of the horror. We were in a shocked daze for the next week.

The doctor told us later that it appeared that Robbie had had a seizure during the night and vomited at the same time. He then aspirated and choked on his own vomit. He had apparently died in the small hours of the morning. My only comfort now is that he wouldn't have felt any pain, for he had no consciousness during a seizure.

I had always assumed that I would sense if anything terrible happened to one of my children, and I could not believe that he had died only a few dozen feet from where I had been sleeping, totally unaware of what was happening. I have since realized that God was merciful to me by not allowing me to watch Robbie die. The doctor told us that it was unlikely that we could have done anything to save Robbie even if we had been awake and right there when he choked---and I know it would have killed me to watch him die right before my eyes.

We knew we had to let Laura know, but we could not stand the idea of telling her over the phone. Hamp called her and told her that Robbie had had a bad seizure and was at the hospital---could she please come right away?

Laura knew that Robbie had not had a seizure bad enough to be hospitalized for in more than a year, so she was upset and crying on the way to the hospital. Suddenly, a vision appeared to her----rainbows and soft clouds and then a meadow filled with glorious flowers of every color. And there right in the middle of the meadow was Robbie, running with great joy and abandon, with the biggest smile on his face that she had ever seen. She was filled with peace and joy and happiness. Then the vision faded---and she realized what it must mean. By the time she reached the hospital, she knew that Robbie had died.

We all fell into each other's arms and cried and cried and cried, as we gathered around our precious Robbie, now so cold and still and unresponsive. But my first thought was to pray and thank God that He had sent us Robbie, that He had entrusted Robbie to our care for those precious 16 years.

I cannot tell you of the correct sequence of events of the next several days. I know we eventually had to go home alone, without Robbie. I know we had to call family and friends. I remember sitting at my computer, with tears streaming down my face, typing out a short message to everyone that Robbie had gone to heaven. I vaguely remember going to the funeral home and picking out a casket, and going out to the cemetery in the snow to pick out a site. The funeral itself is a blur to me, but I am thankful to a dear friend who video-taped it for me so that I was able to watch it several weeks afterwards.

AFTERTHOUGHTS:

Time has become unreal to me since Robbie died. Sometimes it seems just yesterday that we were laughing and playing together; other times, it seems as if he has been gone for an eternity. He is never far from my thoughts, night or day. I keep going over and over the events of the last day, trying to think if there was any warning. There was not. He was getting better and stronger; we expected him to be back to school in only one more day.

No one had ever told us that it was possible he might die, and it had never occurred to us that he could---short of some terrible accident, of course. All parents worry about that sort of thing, but never really think it will happen. But weeks later we received a letter from his neurologist in Wichita, explaining that he had known of the possibility of Robbie's dying, but thought it better to let us live with hope. I agree. It was much better to live with hope. If I had known he could die, I know I would have smothered him with constant supervision and watched over his every breath like a mother hen. He would have been totally miserable.

I believe that by taking Robbie how and when He did, God was validating our allowing Robbie to live a normal boy's life. We had been criticized by some people for allowing Robbie to ride a bike, to climb trees, and to go swimming and roller-blading. But we always gave him supervision and never allowed him to do anything dangerous when he was in a seizure mode. It was actually a blessing in disguise that Robbie died in his own bed, doing nothing more "dangerous" than sleeping. I know that if he had had a seizure and died while riding a bike or swimming, I would have felt guilty for the rest of my life. God knew that, too, and He spared me that pain.

The pain of losing Robbie is always with us, of course, and always will be with us until we, too, die and join him in heaven. I praise God that we have that blessed assurance of seeing Robbie again in heaven because of the grace of our Lord Jesus Christ. And I thank God that Robbie is now well and whole and happy; I know he waits for all of us to join him, to make our circle unbroken once again.