“Only
in the darkness can you see the stars.”
(Martin
Luther King Jr.)
Tired.
That sums it up . . . I am tired. After several weeks of short nights dealing
with our son’s seizures . . . I am tired.
After several days of having to leave work early to deal or son’s
seizures . . . I am tired. After sitting
in the hospital emergency for several hours dealing with doctors about our son’s
seizures . . . I am tired. I am tired of
the sleepless nights . . . the frightening screams . . . the seizure wracking paralyze
. . . the sympathy of medical people who have no answers . . . have no
cures. I am tired of this nightmare that
never seems to end after more than nineteen years. Yeah, think that sums it up . . . I am
tired. It never changes.
A friend of mine calls it SSDD . . .
Same Sh**Different Day. At least that is
what she posted on her Facebook page
this evening when she shared the news about her daughter’s appointment at a
regional hospital with specialists to deal with a chronic condition. The news was not good . . . basically the
daughter was told that there was nothing that could be done at this time . . .
told that she had already been seen by the best and if they couldn’t help, why
in the world did she think that they (the new medical team) could . . .
basically she was told to grin and bear it . . . nothing was going to
change. It really was not the news that
she or her family or friends wanted to hear.
Kind of took the hope right out of that last balloon that they had
found. It sucked . . . and, from the
post on Facebook, I think they are
all tired.
Chronic illnesses and conditions are
tiresome. Tiresome for the person having
to endure them . . . tiresome for the people who love and take care of
them. It is not good for people to get
tired. When people get tired they easily
get frustrated . . . they easily anger . . . they easily give up hope. Giving up hope is the worse. When hope is gone . . . what else is there?
I feel for my friend, her daughter,
and all those who have been circling their lives with prayer and hope . . .
and, now they are tired. They prayed . .
. but did not receive the healing, cure, or even a reduction in pain. They sought expert opinion . . . and the
medical experts had no answers or solutions.
They felt patronized as they left the hospital and wished “good luck” .
. . and like they were saying, “Don’t let the door hit you in the butt when you
leave.” Chronic illness is a tiresome
roller coaster and now they feel as if they derailed. Knowing this friend, there was resignation in
her post . . . there was tiredness . . . a loss of hope.
Yes, I feel for my friend. I know what she feels because I too have been
tired and hopeless . . . just like now.
I have watched my number three child, my number two son, deal with this
crippling disability for nearly nineteen years.
I have witnessed how the Epilepsy has robbed him of a normal life. I have seen how it has made him a social
outcast and ignored or even spurned by a lot of the world around him . . . seen
as valueless. I have sat beside him as
he cried and mourned that his life was not like all the other people who were
his age . . . cried and mourned that he cannot see a life like his siblings in
the future . . . a wife, children. I
have seen him get up for new treatments, and I have seen him blown out of the
water when they produced nothing but wasted time. Up the roller coaster, down the roller
coaster . . . off the tracks . . . get up and do it again. It is tiresome.
I have often wondered about whether or
not there is some hidden limit on how many times a person can go up and down
this emotional roller coaster before enough is enough. Is it a couple of times? Is it a thousand times? A million? Well, I imagine that our son, my wife, family,
and I have hit those peaks a couple of times . . . and, what do others tell us
. . . hang in there . . . it will get better . . . we are praying for you. Nice platitudes, but it does nothing to ease
the tiredness . . . nothing to restore the hope.
Anyone who deals with a chronic
illness or disabilities knows the routine well . . . anyone who loves and cares
for a person with a chronic illness or disability knows the routines well . . .
up and down, all around, and do it all over again . . . over and over. They know all the pat answers . . . all the
nice words of comfort . . . all the routines of those around them who cannot
help. They have been angry at God . . .
angry at the doctors . . . angry at each other . . . and, just plain angry. God doesn’t seem to care or help . . .
doctors “practice” medicine and really are only guessing at what might help . .
. the world seems small and the people in it are irritating even though we love
them . . . and, in the tiredness there is anger. When the anger ends . . . hope is lost.
I have spent a life time on this
roller coaster. I have witnessed the
lives of my two brothers who have disabilities . . . over fifty-some years
now. I have witnessed it in the life of
my son as he battles Epilepsy. I have
seen it in the lives of the people I have served as a minister for over
thirty-some years. I have seen it in the
lives of friends. I have railed against
God . . . and, I have railed with God. I
have cried with loved ones . . . and I have yelled at loved ones. I have been angry at the world . . . and,
angry with the world. I have been tired
. . . and, I have given up hope.
My mother lived a hard life. She understood that life is not easy . . .
that life is difficult. She struggled
with me through some difficult times in my life. I will always remember her words to me in
those times of struggle . . . “This too
shall pass.”
“This
too shall pass.”
She was right. When it was darkest . . . the stars came
out. Here in Montana I only have to step
out on the back porch and look to the heavens to see millions upon millions of
stars piercing the darkness.
Surprisingly, I find hope there in the darkness as the stars sparkle in
the sky. There is hope . . . there is
always hope. Tonight, before I go to
bed, I will step out onto the porch, look to the heavens, and survey the vastness
of God’s glorious touch to witness the stars.
I will breathe deeply of the cool nighttime air . . . close my eyes . .
. and whisper, “Okay, God . . . one more time.”
Then tomorrow I will get up and do it all over again. Yeah, my friend calls it SSDD . . . maybe it
is the thin thread of hope . . . the spark to start the fire going one more
time. I don’t know . . .
To my friend . . . to all those who
carry this weight . . . I know your pain, your tiredness, your
hopelessness. I also know, that you have
seen the stars and that there is always hope.
It may not seem like it right at this moment . . . but this too will
pass. No, not the chronic illness or disability,
but this feeling of hopelessness. Those
stars that pierce the darkness are symbolic of the gifts of God’s presence that
pierce the darkness of this roller coaster journey. They are all around . . . they may not know
what to say or do . . . but they care and surround all of us with their love
and prayers. They pierce the darkness of
our world. There is hope . . . always
hope. I know that you, my friend, will
get up and do it all over again. Why?
Because we care . . . because we love . . . and, because we do have hope. God hasn’t abandon us, so why should we
abandon God?
Yeah, I am tired . . . but “this too shall pass.”
Hope . . . what a strange and
terrifying trip!
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