A Letter to God Concerning the Bruises I Saw on My Son’s Head

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Dear Father,

You know that I’ve tried to pray for my son, but I can’t seem to complete a single sentence. My words run out, and I resort to a weak, babbling, “Oh God… Oh God…” that fades out when something shiny distracts me. Sorry about that. You deserve better, I know. Sometimes, when I can’t figure out what to say, I have to start writing, and let my fingers help me sort it all out. So I’m going to try that right now as I fly home from New York.

Oh God… I’m so confused.

My words have run out because I don’t know how to pray for Jack anymore. Shortly after his diagnosis, it was an easy and obvious prayer: “Lord, please heal my son.” But then I started to learn about this thing we call autism, and the more I learned, the more aware I became of my own ignorance. I grow more ignorant all the time.

I’ve learned that autism is not a disease, but something else. I don’t know what that something else is. In some sense, it is a part of him. Some say it is an integral part of his identity. Is that true? I would be okay with that, I think, if he was just “different.” Really, I think I would. But you’ve seen us the past few weeks. You’ve seen us installing the new alarm on our door to keep him from wandering. You’ve seen the black bike helmet we’ve been strapping onto his head to keep him from hurting himself during his meltdowns. And you see the bruises he gave himself at school on Wednesday. They couldn’t get the helmet on him quickly enough. When I saw them on Facetime, I knew exactly what had happened, and it about tore me up.

This is all new territory, God.

I am afraid. And I am not okay with any of it. Jack is not just a quirky kid whose mind works in it’s own exciting way. I could accept quirky, but this? Something is wrong. Something inside of him is not working the way you designed it to work. He doesn’t have the words to tell us what troubles him, but whatever it is, it is so extreme that he has decided that the best way to deal with hist frustration is to injure himself.

Dear God, this is no the way you designed him, is it? To live with unbearable frustration that turns to pain? Is that part of the identity that you have planned for him? Because I’ll be honest: if it is, well… I just don’t know how to deal with that.

I have always believed the world is broken, and that you didn’t break it.

That you are the great Restorer. That your Son came to make all things new. This has been my conclusion after years of study and thought, but I have to admit, I am bias on this point, because I desperately want to believe it. I need to believe that You are truly, wholly good. That you don’t desire innocent children to live frantic and bruised. That you don’t lock up a boy’s future behind impaired speech centers in the brain.

I don’t know how to help my son, and I don’t know how to pray. I can’t just pray “heal my son” because I don’t even know what that means anymore. I don’t know what anything means.

So I won’t pray anything too bold for now. Instead, I will just remind that your name is Immanuel, which means “God with us.” Come close, Immanuel. Prince of peace, draw near to my son, and give him rest.

Amen.

Photo courtesy of Kanegen under Creative Commons License

When We Thought You Might Die

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“Six years old,” I say to myself, looking at my son from across the little MacDonald’s booth. He is disassembling his bacon, egg and cheese biscuit. I tell him he can eat it like a sandwich.

“I know,” he says smiling, continuing to pull his food apart. He is always confident, but today is his birthday. He can do whatever he wants.

Six years. How could it be six years. It was yesterday. No, it was a hundred years ago.

“Sam, I haven’t told you much about your heart. Do you know how worried your mom and I were for you when you were born?”

“No,” he says, ripping out a piece of bacon.

“We found out your heart had a problem right when you were a tiny baby. Real tiny. And we were scared.”

“Why were you scared?”

I swallow. We have never spelled this out to him before.

“Because sometimes little babies who have heart problems don’t live.” There it is.

“You thought I might die?”

“Yes.”

*****

I grew up crisis free.

My parents loved me. I never wondered whether they were proud of me because they told me they were. My family was whole. My teachers were encouraging, my friends were loyal, and I had only the tiniest acquaintance with death. It all added up to an unsettling form of insecurity. I knew my good fortune would not last forever. I knew crisis would find me. And I wasn’t sure if I would be able to survive it when it did.

When Sam was born, his heart sounded like Darth Vader. They called it a murmur, but I heard a breathy, almost squishy sound. They sent us to San Francisco for tests. I was on edge when the nurse called us back for the results.

“Come on in. Take a seat.”

My heart–my healthy heart–pounded when I stepped into the cardiologist’s office. My eyes went straight past the thin, gray haired man to the giant window overlooking Golden Gate Park. It had to be one of the finest office views on the planet. I clench the back of the leather chair, not wanting to move.

The doctor looked up at me with feigned nonchalance.

“Why don’t you sit down,” he said.

One thought dominated all others: “So this is what crisis feels like.”

*****

Sam is soaking it all in.

He listens intently while taking small bites and staring out the window. This is his thoughtful posture, where he goes from ninja-hero-superspy-cowboy to tiny young adult. He could be a therapist. Tomorrow.

“The doctor wanted to fix your heart, but you were so small, and it is very dangerous to try to fix a little baby’s heart. So Mommy had to keep you alone at home. Just you and her and Jack. Nobody could come over and visit you because we didn’t want you to get sick.”

“He wanted me to get bigger so he could fix my heart?”

“Yeah.”

*****

We sat with him in a small room adjacent to the big metal doors.

sam_6 months

The scariest doors in San Fransisco. A lady came out in a mask and blue scrubs. She knelt in front of us.

“Hi little guy,” she cooed.

He smiled the greatest six month old smile that ever was. Then again, he always smiled. Sam had broken all Hague baby protocols by refusing to cry. It was the greatest relief in our nine year marriage: this child, of all children, did not cry. His cardiologist had warned us that crying could deplete the oxygen in his blood. He could wear himself out and turn blue. He could pass out. It could cause brain damage. It could…

“Oh, look at that smile. You want to come see me? Come here.” He reaches for her like he reaches for any happy face.

I squeeze my wife’s hand. We wear phony grins. Lumps like softballs are lodged in our throats. Our eyes are wet with fear.

“You want to come with me little man? Okay. Let’s go. Say goodbye to mommy and daddy.”

We wave. They disappear behind those doors. Those wicked, violent, life-saving doors. And all of creation stands still.

*****

“So the doctors had to cut open your heart so they could fix it.”

I take a sip of my coffee.

“I didn’t feel it?” he says, already knowing this part. He takes great pride in the scars on his chest, like any boy would.

“No, because they gave you medicine. They poked you with a needle and the medicine made you fall asleep. You couldn’t feel anything.”

“Could I hear anything?”

“Nothing.”

“Not even the cars?”

I grin. “Not even the cars.”

*****

We spent four hours in the waiting room.

My wife sent out texts to family, and I read a spy novel. Three hours passed, and I put the book down. Now I was concerned, but not for my son. I was concerned for me, because I felt I should be concerned for my son but I wasn’t anymore. I had been on edge for the past six months. But now, in the very moment that his most vital organ was being sliced open, I felt nothing but peace and confidence. And I was sure I had broken something inside myself. Some emotional muscle.

And the angels giggled above me. For they know the mystery of a “peace that passes all understanding.”

******

Sam sips his orange juice, drinking it in slowly with the tale.

sam_born“Now you’re six years old. You will still have to see doctors about your heart. That’s why we went to Portland a few months ago. And they will have to fix your heart again. But we’re not scared anymore. It’s not an emergency now. God protected you.”

“Mmm-hmmm,” he says with a grown up sigh. “God always protects his people.”

Six years old. I look down on him, thinking about the complexities of life and theology. How sometimes even God’s people go through horrendous pain. How there will be unanswered prayers and sickness, and heartache. I think about his big brother, whose life has been defined by his “severe autism” diagnosis. How his mind might be whole for all we know, but whose mouth is still held hostage by his uncooperative body. How his diagnosis came on the heels of Sam’s surgery. How that double crisis had us reeling for months on end, leaving us feeling decidedly unprotected.

Yes, there will be many questions Sam will have to wrestle through. So much uncertainty. And more crisis. But I know this boy will be all right, because he will never be alone. God always protects His people. Sometimes through doctors. Sometimes through miracles. And sometimes through the comfort that follows the river of tears.

We walk to school together, and he hands me his orange juice because his hands are getting cold. I smile and ask him what he wants to do this year. His seventh year.

“You want to become a spy? Or a Dallas Cowboy?”

He skips in front of me. “Yeah. Just whatever.”

Just whatever. He can be whatever. Because he is whole. The angels are giggling again. And I can hear them whisper, “Every good and perfect gift comes from the Father of lights.”

An Ode to Stubborn Optimists (And One in Particular)

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Dear Madame Optimist,

In darker days like these, when the screams, the tantrums and the safety helmets are close by, I wonder whether you will change your mind about our boy’s potential. I pray you won’t. You have this abounding faith in him that I envy, even in my doubts. You hear him mimic Nemo, and you think it means he feels lost. He hits his head and stomps, and you assume he doesn’t like our topic of conversation. He flaps his socks in the general direction of a tree, and you explain it’s because that tree reminds him of one he used to see before we moved here. Before all of this. When we still thought we were a normal family.

You know how kids stand against the wall for a height measurement, and then want to do it again the very next day? It never fails. They always think they are taller than yesterday. Every time. It could be the shoes, or the angle of the pencil, but they will claim a new centimeter.

This, I would wager, is how that particularly difficult person sees him right now (and you know of whom I speak). And if I am honest with myself, this is how I see you when I let my guard down. The realists (don’t dare call us “pessimists”) surrounding our boy bite our tongues and hang our heads. We see the wall and sigh, for all the pencil marks show up in the same vicinity.

It’s not that we doubt you. We just know how unreliable measurements can be.

Especially when those measurements concern him. A hundred times over, we have watched him progress and then regress, charge and then fall back, climb and then slide down. And so we hesitate to “go all in” on his progress.

But this is supposed to be about you, not us. About how you seem like you’re in denial sometimes. About how you need a teaspoon of tweaked expectations. About how we, the “properly adjusted” ones, are concerned that you are setting yourself–and all of us–up for further disappointment. Because let me tell you something, my love: belief is not as easy for all of us as it appears to be for you. Some days, it feels impossible. The truth is, many skeptics actually want faith. They would believe if only they could conjure up the courage. And on bad days, even after all the lessons I’ve learned being his father and your mate, I still feel a coward.

Forgive me. Forgive me.

You married the man who babbled, “I do believe. Help my unbelief.”

And that is why I need you. That is why we all need you. You are not the child with her heels against the wall; you are the loud cheerleading grownup. You swoop in and holler, “you HAVE grown!” We need you because you are well aware of the padded socks and the angle of the pencil, and yet you still see progress. We need you because, at the end of the day, you are exactly right: the child is taller today, if only by a hair.

My dear Lady, I am sorry I have trouble seeing in tiny increments. I read stories aloud but I miss “the little words,” as you are fond of saying. The forest is clear, but trees are all a blur. And I want to see them. I need you to keep pushing until I do see them. Until I live and love like Paul prescribed: hoping and believing all things. Because that kind of love, he assures me, never fails.

Give me time. Give all of us time.

I am only a couple of steps behind you now. I know the tantrums will subside. The safety helmet will return to attic storage. Our boy will grow. He is growing.

And before long, everyone will celebrate that fact.

Because even the “realists” around you, in our deepest places, understand that your way of seeing is not only nobler than ours, but lovelier and wiser as well.