I shared a special photograph on facebook this week.
My son, a small smile, and a slice of warm, wheat bread.
After nine years with no bread or pizza crust, no pasta or ice cream cones, our boy successfully completed a food challenge for wheat at the children’s hospital.
No more allergy.
I started baking bread the very next day.
There are other allergies. More severe allergies. There will be more food challenges. But this is something new. Something wonderful.
I once wrote about my son and his allergies for the website Deeper Story. It’s one of my favorite things.
I’m sharing it again, and on my own website, because the truth I was trying to discover then feels even more important now as we navigate this change.
We haven’t arrived at the end of this story, but we have begun a new chapter.
The full story remains complicated. A little bit beyond my grasp. I am comforted to remember that the very best stories are never the easy ones. Not the easy ones to tell. Not the easy ones to hear. Certainly not the easy ones to live.
Here is that old, still continuing, story.
“Finally, the lessons of impermanence taught me this: loss constitutes an odd kind of fullness; despair empties out into an unquenchable appetite for life.”
– Gretel Ehrlich, The Solace of Open Spaces
I know two ways to tell this story.
The first way follows a trail of brokenness. Like a mountain path marked by rubble.
I don’t like to tell it this way. It feels so negative, even somehow un-Christian. But I do sometimes tell it like this, especially when you ask me directly about my son’s food allergies.
The twin themes of this story are loss and fear.
This is the story of eight years with no bread or pizza. No ice cream or cheese. No peanut butter-and-jelly, no granola bars. No yogurt. No mac-and-cheese or fish fingers or chicken nuggets. No birthday cake at the parties of his friends.
This is a story about epi-pens and calls to 911 and too many visits to the E.R.
I might leave out the details of that one mother-son date when I forgot the epi-pen. No happy ending (in this case, a stranger with a pediatric epi-pen in her purse) can erase the horror of five minutes spent listening to death rattle in your little boy’s throat and knowing it is entirely your fault.
The central episode of this first story might be the year my son spent eating lunch alone at a table on the stage of the school cafeteria. The only kid in the “nut-free” zone.
The second version of the story is more positive. You might call it pie-in-the-sky. Or, possibly, head-in-the-sand.
I’m not sure the story told this way is any closer to the truth, but it is easier to tell and easier to hear.
Highlights of this story include the gluten-free bakery only ten minutes from our small Pennsylvania town. They make pizza crusts and hamburger buns and even cupcakes without wheat or dairy or nuts. The pizza crusts are a little sad, but I will leave that part out.
This second story will make your mouth water. I will tell you about our special fried chicken and meatballs made without bread crumbs. I will tell you about a little concoction we call “pizza rice.” I will tell you how much my son adores his seaweed snacks. I will tempt you with my recipe for pumpkin bars.
Neither story gets it right. Neither one touches the heart of our experience these eight years. The first points out all that is missing. All that is twisted and wrong. The second tries to distract you from the brokenness with a pile of deliciousness.
Both versions leave me hungry for the truth.
I think the true story follows a third way. As so many of the best stories do.
I’ve been feeling out the contours of this other way for years, as if searching for a secret place. The place where loss is still loss but is also, somehow, gain. The place where grief remains grief but where it is also the color of joy.
How do you tell a story built on contradictions?
I can’t send my son to summer camp, but my son lacks no good thing.
I pray every day that my son will be healed, but I believe the answer I’ve long been given: he is already healed.
Our family table is ringed round with fear and loss. Death and sickness. We never sit down to eat without noticing those shadows at our feet. And yet the food we eat at this table is good. Each bite tastes like a gift.
How can I ever account for the wonder of a table prepared in the presence of my enemies?
When my son tells the story of his old school, he tells it like this:
“Mom, remember when I ate lunch on the stage in the cafeteria?”
“Yes,” I say. “How could I forget.”
“I was all by myself. It was like eating on top of a mountain! It was so quiet there.”
Watching him tell his story, I see a far-off gaze. I see something around his mouth. It is like the memory of a smile.
As if he’s glimpsed some other, hidden world. Some truer place.
Today is the day for a miracle …
Today the calendar says spring, but when has the calendar ever told us anything true?
As I write, darkness has dropped, the wind is howling, and the hanging porch lights are twisting like terrified animals on their chains.
The sound of this wild March wind does not make me feel cozy. It sounds too much like someone in pain.
Today is the day for a miracle …
I keep telling myself spring is already here. I’ve known for days that it was time to plant. Peas, lettuce, radishes, beets, spinach, swiss chard … so much needs to be in the ground.
But who has faith for gardening in the midst of snow flurries and sleet?
Today is the day for a miracle …
The apple trees we ordered months ago have arrived. They look like apple sticks. The children do not believe me when I tell them we’ll bake pies. I’m not sure I believe myself.
But I’ve seen more winters than my children, and I do know this: the day when daffodils emerge is not the day for hope. The day when seedlings show the bright green of new life is not the day for faith. That day came and went.
This is the day for a miracle. This day. The dark day. The cold day. The day when all you can see is mud and broken things, like so many toys strewn across the backyard.
Easter Sunday is not the day for miracles. It is the day for praise.
Every miracle we ever needed, every miracle we ever wanted begins on Good Friday.
“See, I am doing a new thing! Now it springs up; do you not perceive it?”
*Today I am listening to this song by Hans Kraenzlin
A birthday letter for one’s child should be a marker of all that a mother knows. For instance, on the day you turned three you had a scratch on your cheek and a bruise on your forehead. Your legs and arms were somehow both surprisingly long and impossibly tiny. You loved your balloon. You whined for more chocolate cake. You pronounced it so carefully: “choc-oh-lut.”
But you are almost entirely unknown. This doesn’t bother me or frighten me. At least once a day your father or I will laugh at you and say, “Who are you? Where did you come from?”
Your blonde hair sets you apart in our family. But it is more than appearance. Perhaps it is comparison. With two older siblings whose personalitites and interests have seemed long settled, you are less familiar. We are still getting acquainted. You are still getting acquainted with the world.
Or, perhaps it is a holdover. You were unknown for nine months before your birth. Boy or girl? We chose not to know. You were the little stranger born into the thoroughly familiar, the utterly known: our own bed, in our own apartment, in a city that felt like home.
There has been only one moment when I saw more. One moment when I seemed to glimpse the you that is still buried in your bones.
You were six months old. It was late at night. Your cough was so like a barking seal that we had no need to google symptoms. We could name it. By naming it we felt we had tamed it.
We had done no such thing. In the space between those known, nameable coughs your breath became jagged. Desperate. Each breath seemed just on the verge of not coming at all.
Your father spoke with the nurse on call, and I held you on the floor of the bathroom, your face hardly visible through the steam. I prayed for you.
So often prayer is just a desperate word or two. It hardly seems capable of traveling whatever distance lies between my mouth and God’s ear. But sometimes prayer takes over and I know that it does not come from me at all. It is more like a river, and I’ve just fallen in.
Sitting there, holding you, I was in that river and I saw something. It was as if that rushing river of prayer drew back the veil between known and unknown, seen and unseen. I saw You, the you that is never just a baby or a three-year-old, but the You that is every age, and I recognized how far away from me you would travel. I could see you bringing light into dark places where I would never go. It seemed to me, as I prayed, that there was a great struggle taking place in this ordinary, steamy bathroom.
Later, I recognized that this river of prayer was not my communication with God. It wasn’t my puny request for healing. A simple question to be answered “yes” or “no.” The prayer was God’s own roaring response to the darkness, the utter evil, that would end your life before you could do all that you were made to do. Or, more importantly, before you could become who you were made to be.
God wouldn’t allow it. Yes, the darkness was there with us, grasping at you as you grasped for breath, but God was shoving it aside. Saving you because we needed you. A “we” that includes so many more than just your father and I.
I don’t know exactly who you are or how far you will go. I do know your life will be beautiful, more beautiful even than these first three years. Your life will matter, more than it already has to your family. And I know you are one step closer today to the promise I glimpsed in that prayer.
You are three.
Unless this is your first visit to my blog, you know that I’ve been in waiting mode almost since the day, two years ago, when we arrived in Florida. One of the very first posts I wrote was called On Waiting.
Two years ago, I didn’t know what I was waiting for. And, sometimes, waiting is like that. It is a heavy weight. An ache. A question: what now?
But God was present in the waiting. Every day there was water seeping from desert rocks. Food dropped, fully-prepared, on the desert floor.
Occasionally, I even spotted the cloud by day and the fire by night. Spring wildfire season in Florida meant that once we followed a narrow column of smoke the whole twenty-minute drive from our church to our house. Another evening, we followed a full moon made blood-red by reflected fire. That fiery moon hovered in the center of our ash-covered windshield for the long, long drive from a downtown theater to our home. Whoever said that metaphors aren’t as solidly real as flesh, blood, and bread? Those old Bible stories are still alive, you know.
God has been water and bread, fire and cloud for us. And, slowly, so slowly, he filled in the emptiness of waiting with vision. I still waited, but I could see something of what it was that I waited for. This waiting was less desperate but more impatient.
Even hopeful, expectant waiting is difficult. I have wearied of the waiting. I wearied of it long before I knew how heavy it would become.
This winter I got sick. Florida’s pollen season came early and fiercely, and my lungs failed. I spent weeks lying still beside my bedroom air-purifier focusing on each breath. On the worst day, the day that found me back on the doctor’s examining table desperate for new asthma drugs, I found out that I was pregnant. Such surprising, beautiful news, but it was hard to hold on to my belief in an unseen baby while my body tumbled down into an even darker hole. Now nausea and exhaustion kept me pressed into my pillow more tightly than even the asthma.
And I waited. For hope. For healing. For breath.
I waited for God to show up, and I expected fireworks. I imagined an end to my waiting something like a switch clicking from dark to light. When will he come, I wondered. Tomorrow? The next day? How long, Lord, how long?
This morning I sat in the lovely light of a college chapel for a presentation on lament. Lament like that of Psalm 13: “How long must I wrestle with my thoughts and day after day have sorrow in my heart?”
I’m in Michigan for a writer’s conference, and it feels strange and beautiful to be enjoying again the midwestern spring. Daffodils and tulips. Redbuds and soft, green grass. Unfortunately, the beauty also means that Florida’s pollen has followed me northward. In the busyness of travel I forgot to take my little, pink asthma pill. During my first day at the conference I could never quite escape the pain in my chest and the breathless anxiety that is like a sharp, metallic taste in my mouth. I remembered the pill this second day, and I could enjoy, a little more easily, the cool, wet wind and the rainy sidewalks plastered with petals.
One of the presenters in this session on lament, a songwriter, asked his audience of writers to sing. And, so, I found myself breathing out these words, my own tune-less voice supported by all the voices around me: “The One who gives me breath. He is my Shepherd. I shall never be in want. I shall never be in want.”
The One who gives me breath.
He is my Shepherd.
While I waited for fireworks, for the coming of God like thunder and lightning, my Shepherd slowly, almost imperceptibly, brought me from a sickbed to a chapel filled with the light of a midwestern spring. He did this so that I could know: He is the one who gives me breath. I shall never be in want.
Perhaps my waiting isn’t over, but I know that it is ending. One seed planted in darkness and emptiness is now a fully-formed child, prodding me from within. And I believe that this new life is not the only seed that God has planted in these waiting years.
The true end of my waiting will be, I think, like the coming of spring itself. Subtle. Slow. Until I find myself singing a God-given song and wonder, “When did this happen? How did I get here?”
“How long, Lord? … How long will you hide your face from me? … But I trust in your unfailing love; my heart rejoices in your salvation. I will sing the Lord’s praise, for he has been good to me.”
This is the kind of landscape I’m dreaming of. Cold. Bleak. Beautiful. Beautiful because there is not a drop of tree pollen for miles.
It seems that the trees here in northern Florida are trying to kill me. Maybe they have no such intention, and it’s only that my lungs have misunderstood. They think the thick yellow dust swirling through the air is reason enough to close up shop. I try to convince them otherwise with pills and inhalers.
It’s been a long month, and pollen.com tells me I still have a ways to go.
I’ve never experienced anything quite like this. It’s left me feeling nostalgic for Chicago’s concrete jungle. Living there I did do some sneezing in springtime, but this? I’ve never known anything like this. I’ve always said that I’m a winter person. That I need that season of cold, sleepy hibernation. It seems my body agrees. There’s always something blooming in Florida, and, apparently, my lungs have had enough.
For now, I’m sticking close by my bedroom air purifier. I have time to be inspired. Time to write. Somehow, though, I’ve found the life of the bedridden to be less than inspiring.
Still, whenever I open my Bible I find promise after promise of healing. Who knew God had so much to say about healing? Now I know, though the promise of it belies my reality. So, I’m holding tight to the promise and waiting.
“Blessed is the one whom God corrects; so do not despise the discipline of the Almighty. For he wounds, but he also binds up; he injures, but his hands also heal.”