The voice
on the phone is bright and cheerful, exactly what I need today. “I have some great news for you,” she declares.
I could use
some great news right about now. My son has
been struggling with complicated health issues for a long, long time, and every
time the phone rings, it seems to bring more bad news. The recent lab work doesn’t look good. No improvement in the numbers. The new medication doesn’t seem to be
working. The medical team is deciding
what steps to take.
Once upon a
time, a long, long time ago, wishes came true.
Miracles happened. Prayers were
answered in the most amazing ways. A precious
baby boy lay in a hospital room, alone, fighting for his life, and against impossible
odds, in spite of the doctors’ decision to “make him as comfortable as possible
until the end,” he made it! He was given
a
chance to thrive!
But here’s the
thing about caring for a child with fragile health: not all wishes come true. Not all stories end with “happily ever after.” Sometimes prayers are answered, not with
miracles, but with silence. The medical
complications are not easily resolved, there are no specific “praises” that can
be e-mailed to the church prayer chain. He
was born with significant health issues, and seven years later, guess
what? He still has significant health issues. Seven years later we are still praying. Still waiting for him to be healed.
Caring for a
child who has a debilitating illness, day after day, year after year requires a
sustained obedience. It requires, not a
one-time emergency room sprint-faith, but a daily long distance marathon-faith. It requires stamina and perseverance and
fortitude and patience. Joy and peace and
acceptance. Those have become the things I wish for.
And those
are the very same character qualities I wish for my son as well. It has been such a long, difficult road for
him. He just wants to be a normal kid,
with good friends to play with and fun activities to keep him busy. We tried dance classes (he’s got some great
moves!) and soccer (he can run unusually fast!), but his frequent illness
forced us to quit. He was enrolled
briefly in school, but he ended up missing so many days that we had to withdraw
him and teach him at home. I’ve coordinated
countless play-dates with kids who I hope could be his friends, but either he
is sick or there is a germ spreading through his friend’s family, requiring us
to cancel our plans.
These have
been hard, disheartening decisions. He comes
alive around other people! He thrives on
social interaction and the inescapable synergy that happens in a crowded room. Every stranger he meets, adult or teenager or
child, isn’t a stranger at all, but his next best friend. And so to be stuck at home, alone with just
his family, is a slow form of torture for him.
Sometimes I will find him at night, tears falling onto his pillow. “Why?” he sobs. “Why don’t I have any friends?!” His loneliness and boredom and frequent disappointments
break my heart. Why, indeed?
Last month,
for his 7th birthday, I wanted to make up for all of the childhood
that he has missed. All of the Sunday
School classes he couldn’t attend because other kids come to church coughing
and gooey and we just can’t risk it. All
of the birthday parties he has not been able to attend because he was home
getting a nebulizer treatment for the infection in his lungs. I wished, for one day, that he could feel
loved and important and treasured.
Several
family friends had made plans to join us in celebration of his special day, and
his aunt arranged to fly cross-country in order to be here. But then it snowed and all our plans came to
a screeching halt. Our friends were
snowed in. His aunt’s flight was
cancelled. We lost electricity that
evening, so instead of the anticipated party, we spent the time searching for batteries
for the flashlights, lighting candles, and trying in vain to get the damp wood
in the fireplace to catch on fire. Why,
God? Couldn’t he have a memorable day? Just this once? Another wish, dashed.
For him,
the worst thing, by far, are the frequent blood draws that are so traumatizing and
cause him to panic so uncontrollably that it takes five people to restrain him.
(I counted. He has had 15 surgeries, 125 appointments
with doctors and specialists, 175 needles stuck into his tiny veins, and more
than 400 days and nights in the hospital during his seven years of life. Who wouldn’t
be traumatized by that?!) Even saying
the name of the medical facility or spelling the word l-a-b-s causes his entire
countenance to fall, his brain and his body visibly bracing for the flight-or-fight
response to the unbearable pain he knows is coming.
For me, I
absolutely loathe the medication that he is required to take. A vile, nasty medication that makes him feel perpetually
irritable, constantly hungry, unable to sleep. It makes him – and me! – thoroughly miserable. And the irony is, despite countless dosage adjustments,
it isn’t even working! Why does his body
continue to fight against itself, attacking the very organ that once saved his
life?
It is a constant
challenge to persevere, to find joy, to not lose hope. To continue wishing that one day, just maybe,
he will become healthy. That there will be an end to this frustrating
and lonely and painful journey. That the
doctors will be able to find the cure that his body needs.
So yeah, I
could use some good news right about now.
“Hello!” says the chipper voice on the other end of the line, “I have
some great news for you! I work for an
organization that grants wishes to children with terminal or life-threatening
illnesses, and your son has been approved!
He can start making a wish!”
I am so
shocked, I can barely respond! “Um, what
do you mean he has been approved?”
“Well, his
medical team made the determination, of course.
They completed all of the required paperwork. Because of his life-threatening illness, he
qualifies for our program. Do you have
any ideas of what he might want to wish for?”
I have no
idea what he might wish for! I am still
stuck on the words, “because of his life-threatening illness.” So, he really does have a life-threatening
illness? I mean, in the back of my mind,
I have always known this, of course. My
husband and I briefly discussed it once, but it was so horrible to contemplate
that we quickly changed the subject and never brought it up again. Our day-to-day life just seems so
normal. Frustrating and sad at
times. Disappointing and lonely and
sometimes overwhelming. But for us, for
him, those are all normal. They have
become an expected part of the life we live.
Life-threatening illness? How could I have forgotten this
inevitable truth?
And how on
earth can this friendly woman on the other end of the phone say that this is great news? Great news for who? Is it ever great news to be reminded that
your son has a life-threatening illness?
Of course I am grateful. Of
course I am thrilled that he will finally have something positive in his
life. But I don’t want him to qualify for this program! I don’t wish for this once-in-a-lifetime opportunity! I would prefer that he be healthy and whole! I want him to be able to go to school and
play with friends and practice soccer and enjoy fun birthday parties!
She
patiently explains the process, and after I hang up, I gently broach the
subject with my son. “If you could make
a wish for anything in the world, maybe go anywhere you want or meet someone
famous or do something amazing, what would you wish for?”
He doesn’t
even hesitate before answering. He claps
his hands together and declares, with enthusiastic zeal: "I want to go on a mission trip with you!" For the second time in less than 30 minutes,
I am stunned! I thought for sure he
would want to visit a magical kingdom where, presumably, wishes come true every
day.
But no,
that isn’t his wish at all. He wants to
go on a mission trip! He doesn’t want to do something for himself, he wants to do something for
someone else. He doesn’t want to receive, he wants to give!
It makes sense now. . . He doesn’t want
to have friends, he wants to be a friend! Instantly I can envision him entering a small
village on the other side of the world, bringing light and laughter and love to
a dark and dreary place. Bringing hope and
joy and cheer to other children who will become his next best friends.
I realize
that I’ve been looking at his challenges with the wrong perspective. While I’ve been wishing for a “normal”
childhood with activities and experiences that will make him happy, God has
been using his medical challenges to develop his spirit. To help him grow in character and strengthen
his marathon-faith. To learn joy despite
the physical pain. Perseverance through
the unending struggles. Endless hope
despite the frequent disappointments. Compassion
for others who face circumstances far more difficult than his own.
I don’t
know what the future holds for him. I
don’t know if his body will ever fully be healed or if he will ever be able to
have a “normal” life. I don’t even know
how long his life will last. But I do
know this: the very character qualities
that I wish for him, God is, at this moment, growing in him. He is demonstrating joy and perseverance and
hope and compassion. Beautiful, eternal qualities. Qualities that might not easily develop at school
or soccer practice or birthday parties. Qualities
that only grow in the crucible of difficult circumstances.
Sometimes
miracles happen in an instant, in surprising, unexpected, extraordinary ways. And sometimes they take a little longer – maybe
even years – to materialize. But the
truth is, those silent answers to prayer may only seem silent. Maybe God is actually
working miracles on the inside, in
the private, invisible spaces that truly matter.
Maybe, just
maybe, wishes do come true.
God works in very mysterious ways, His wonders to perform. Some blessings are hard to carry everyday. Praying for y'all.
ReplyDeleteThank you for this. For being his mom. For bringing God to his life. Even though I don't know him, I'm inspired by him. May God continue to hold all of you tightly.
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