February 24, 2016
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.