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
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
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.
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
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
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
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
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.
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
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
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.
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