OK, the prodding, cajoling, needling, pushing, shoving,
pleading, and encouraging have had its effect. I will TRY to become a regular contributor
to this blog. Until I get as creative as
Karen I will recount some of Jacob’s Journey and its impact on me.
I won’t start at the beginning of his remarkable life. I guess that will be for another time. But I
want to recall the first time I remember taking a phone call that changed the
trajectory of my day and my future.
I was at Camp Cherokee in the backwoods eastern Tennessee
for our church’s youth camp. I worked with the kitchen crew as a cook (I prefer
that title over dishwasher), but my real job was to keep an eye on Jacob in
case of an emergency. He always enjoyed
going to these camps. He felt ‘normal’. And I always enjoyed watching him be ‘normal’.
The only phone to the camp was in the kitchen and it was
only to be used for important calls and emergencies. It was a Wednesday
afternoon, when we were beginning to prepare dinner when the phone rang … and
my life took another drastic turn.
It was Karen on the other end and, even through the static
on the line and noise in the kitchen, I could tell something was terribly
wrong. In a quivering voice, Karen shared that she had received a call from Jacob’s
cardiac doctor with the results of some tests that were run on him the week
before to determine why he had been gaining weight and been declining in his
energy level. This had been a source of concern for over a year. The doctors,
at first, attributed it to the typical adolescence transition of life. Then
they began to ‘fuss’ at us for allowing him to eat too much junk food and not
getting enough exercise. We countered by asserting that he didn’t eat like your
typical teenager but ate more like a bird. Finally, the doctor decided to test
for one more possibility …. and it was discovered he was suffering from Protein
Losing Enteropathy (PLE).
I won’t try to
explain the complexities of this disease here. I will point you to another blog
site that I created when this was discovered. I titled it, “Jacob’s Journey”
and it was the beginning of my writing about our struggles and, well, journey, into
the valley of shadows. I used that blog to explain what Jacob was facing until
we discovered the Care Pages. You can read those entries if you want to be
reminded of or familiarize yourself with our journey. Here’s the link:
http://jacobsjourney.blogspot.com/2004/12/entry-date-july-26-2004.html
After hanging up the phone, I was in a state of shock. I
quickly excused myself from my duties and sought out a private and quiet place
(which is very hard to find at a youth camp).
It may seem strange but at that moment, really for the first
time in Jacob’s life, I had a foreboding sense that we may lose him. Obviously, in every one of his four major
open heart surgeries I had a deep concern for their outcome. But I had
approached each surgery as a competition, calling on my sports experiences of
facing overwhelming odds in order to gain a victory. I know that may sound
silly or downright stupid to you who read this. After all, it wasn’t me going
under the knife in a life saving effort. I actually had no control over the
outcome of each surgery. But there was a sense within me that I had done all I
could prepare myself, Jacob, and my family for what was to come. The rest came
to a childlike faith in God. And we had ‘won’
every time.
But on that summer afternoon in the hills of Tennessee I had
been totally blindsided. I was not prepared to consider that within six months
we would be facing the ominous specter of a heart transplant. Those two words
had shaken me and my confidence to the core.
As I returned to my duties, it must have been obvious that I
was devastated. My colleagues asked what was wrong; was Karen OK; had Katie or
Ben been hurt. I tried to explain and I tried to avoid seeing Jacob because I
did not want him to see me in this broken condition. I had always tried to be
the strong one for him; to be the steadying force when he needed reassurance.
But at that moment, it had all disappeared.
My colleagues rallied around me, offering prayers and words
of encouragement. I remember distinctly going out on Glen Chappelear’s ski boat
with the kitchen crew and explaining what I had learned that afternoon. They
offered up a sweet time of prayer with the beauty of Lake Oconee as a
backdrop. It seems incongruous to say
but I felt close to God and shut off from Him at the same time as we rocked
gently in the boat.
The rest of the week was a blur. I vaguely remember Myra
Woods and Mary Wishon bringing Karen to the camp. Honestly I don’t remember a
word that was said between us. I don’t remember what she did when she saw Jacob
and what she said to him. I do remember that we did not tell him the test
results because we wanted him to enjoy the week. And, boy did he! He finished
the week by receiving the Boys’ Camper of the Week award.
I’ll stop this blog edition for now. Sorry that it’s so
long. My plan is to share some of the recollections from our journey through Jacob’s
transplants. I will also share other assorted things that I have learned along
the way. I don’t know how often I will enter a posting but I invite to join me
in this new journey.
No comments:
Post a Comment