Live today's questions

The unanswerable questions are filled with invitations to growth.

At six months old, Sarah had an invasive, but necessary, surgery called a Cranial Vault Reconstruction. This is a photo I took of her as soon as she awoke from the anesthesia. Fall 2013.

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Sarah was six months old when her skull was surgically sliced in half.

At the pre-surgical consultation, Ben asked Dr. Flores, the pediatric craniofacial surgeon, “How bad is it, her Apert syndrome? It’s mild, right?” He wanted to avoid the dreaded conversation as much as I did.

But Dr. Flores leaned in to both of us, glancing at Sarah sleeping in her baby car seat next to us. “This is the real deal, I’m afraid.” His voice was soft, but his gaze was fierce.

I felt a boulder in my throat, but I could not release the tears. Some news is too shocking in the moment to fully absorb, even accept. This was one of those moments for me.

After a beat, Dr. Flores invited Dr. Boaz, the neurosurgeon who would be working with him on the surgery, to chime in. “Well, I will make the suture across her bi-coronal plates to open up the skull, which is the functional aspect of this procedure. Dr. Flores will do the artful part of this surgery. He will craft a metal insert known as a distraction device and surgically attach it to the sides of Sarah’s cranium.”

I gulped. “What’s the name of this surgery again?” I asked, avoiding eye contact but scribbling furiously in my notebook to avoid coming emotionally unhinged.

“Cranial vault reconstruction,” Dr. Flores said. “There will be two medical-grade titanium pins protruding from Sarah’s temple area, and we will give you a specific type of screwdriver to turn the pins a certain number of rotations per day after she’s stabilized. Then, if all goes well, we’ll have you bring her back here in a few months, and we’ll remove the hardware. She’ll need frequent CTs to make sure there’s no fluid build-up on her brain.”

Ben and I stared ahead—not at each other, not at the doctors. My eyesight blurred, and all objects in the room grew hazy, only faint lines to determine shape and color. My heart seized with a numbness I had only known once or twice in my life, during times of extreme duress. How can we withstand something so violent to our baby daughter? I thought.

As if reading my mind, Dr. Flores offered this point: “It will be mechanically easy but psychologically difficult for you.”

Mechanically easy. Psychologically difficult.

Isn’t that what all of this feels like? The diagnosis, the barrage of information, the timeline of care? It’s easy to motion through, to act as an administrator of medications and scheduling renal ultrasounds and bone scans. But to bear such a thing in the heart is another matter altogether.

The night before Sarah’s Cranial Vault Reconstruction surgery.

I captured this photo in the soft glow of twilight, shortly after Ben and I settled in our extended stay hotel. At first, I felt a twinge of discomfort, telling myself it was absurd to document her surgeries this way. But a deeper, truer part of me said I would want to remember what her face looked like before her skull surgery altered it—the way she was born, the way I’d gotten to know and love her.

And when she was finally wheeled away from me, growing smaller in my central vision until the gurney holding her tiny body became a speck, then vanished behind the locked doors of the surgical unit, my body finally released all the emotion it had been storing for months. I silently wept, turned away, and thought, Whatever happens now is out of my control.

There were masses of people praying for us, sending cards and emails, lining up to bring meals upon our return home. I didn’t know how to accept generosity like this. Hadn’t I been the one who usually gave in times like these? To welcome help was a new level of vulnerability. It meant I had to acknowledge that I couldn’t do this alone, even with Ben by my side.

This was the moment I began to ask the proverbial question: Why? Why did this happen to Sarah? Why couldn’t we have a “normal” family and a “normal” life? Why did Felicity have to be at home without us, not knowing why we were gone or what was happening to her sister?

It took me nearly seven years to tell myself this: There are many unanswerable questions in life. Not every problem has a solution.

My spiritual director once shared with me a poem, which is really an excerpt from a letter Rilke once wrote to an aspiring writer. Here it is:

Be patient toward all that is unsolved
in your heart
and try to love the questions themselves.
Do not seek the answers that cannot be given you
because you would not be able to live them.
And the point is to live everything.
Live the questions now.
Perhaps you will then gradually, without noticing,
live along some distant day into the answer.¹

I never learned how to live the questions, or what that even meant, until Sarah was born. Then, everything became a question mark.

What is the life expectancy of someone born with Apert syndrome? Unknown.
What is the primary cause of death for someone with this condition? No statistics.
What’s the mortality rate? No idea.
Will Sarah have an average IQ, or is she at a higher risk for an intellectual disability? We can’t tell for sure.

Because the condition is classified as a rare disease, scientific research is still evolving to offer families some semblance of clarity and direction, on what to expect or how to plan and prepare for certain comorbid diagnoses. The reality is that Apert syndrome is enigmatic, in the sense that every person who has it is, of course, different. Some have more hearing or vision problems than others. Some have autism, while others don’t. Some struggle with speech, while others enunciate clearly.

It’s a frustrating label, most of all because you never know when things might take a turn for the worse.

Living the questions became a means by which I could center myself, find sanity in the midst of the maddening uncertainties. Asking the questions faded as I’d replace them with, I don’t know. No one really does, so I will just make the most of today.

This wasn’t a practice I was familiar with, this sort of mindfulness exercise. But it became the way I was able to look at what was happening all around me—in my backyard, as my neighbor passed by my house, when the robin built her nest across the driveway on another neighbor’s porch, in handwritten notes tucked away in bushes to reveal affirmations, like You are stronger than you know.

In this season of my life, I began noticing things again. And I cared about more than obsessing over whether Sarah would live, or die young. Nature became my refuge. Simple things, like sitting with Felicity and reading her favorite book, It’s Time to Sleep, My Love, offered both of us a sense of familiarity, comfort. I needed life to be routine in some ways, however slight.

Learning to love the questions meant I had to accept that the outcome to my greatest fears might be actualized. Or not. Maybe what Rilke wrote was true—that receiving the answers to all of my questions right now might be something I am not ready to receive, not mature enough to handle. There must be something more I need to experience before I can accept the harsh truths I’m too frail to hold in this moment.

Being fully alive means I can’t close myself off to pain. I can’t turn away from it, especially when it is one of my children who suffers in front of me. The human experience is a continuum of highs and lows, losses and gains. I can’t delete the things I’d rather not experience and only focus on what brings me joy.

Because it’s the pain that has deepened my ability to sit with others who cry in anguish. I no longer wince or cringe at raw displays of emotion, because I have joined the ranks of the bereaved.

And living the questions today—in this moment, in this space—has expanded my ability for gratitude and generosity, compassion and care, living and loving.

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If you liked this article, feel free to check out these similar essays I wrote:

You don't lose hope, because you can't.

What it's like to live with an invisible illness

Your "Something Greater" is where you are and where you aren't yet.

1. Rainer Maria Rilke from Letters to a Young Poet.