By Haley Shamblin
@haleyshamblin

I pull up to my routine anatomy scan, give the receptionist at the front my name and birthdate, and settle into the chair in the lobby next to my eager husband. His familiar hand touches mine; we intertwine our fingers and lay our joined wrists on the armrest between us.

I’m 24 years old, glowing with expectancy and naivete. I assume, at this point, the hardest part of our fertility journey is behind us: waiting for the strip to turn pink. It never occurs to me that for some, at 20 weeks, halfway through this growing-of-a-human in their belly, mothering—as they knew it (as they dreamed it) can slam to a halt. For some, they'll learn what it means to worry about their child—a gut-wrenching worry—before they ever get to study the curves of their face, the deep ocean blue of their eyes, or the supple softness of their skin.

I have no idea, this dry August day in the middle of a Sacramento heat wave, the life we are about to walk into.

“Haley,” the nurse calls out.

“That’s us,” we say as we smile into each other’s young eyes and fall into step behind her. 

***

We process the news the best way we know how. We type into every google search bar, spina bifida, hungry for reassurance. Diagnosis. Treatment options. Prognosis.

For weeks, I lay in bed at night and dream of the waiting room: it’s polka-dotted cushions atop plastic chairs, lined up awkwardly facing one another in some attempt to pretend as though we live in a world of eye contact and connection. Why do I want to go back here? To this cold, sterile room with fake plants lined up along the counter and cheap art adorned on the walls. 

I’d give anything to go back. To the world before. When there was nothing but a heartbeat to know. 

***

It’s Christmas Day. We look into each other’s tired eyes and quietly excuse ourselves from our extended family’s merriment and pseudo-celebration. 

What kind of a mother leaves her newborn baby alone on Christmas morning? I wonder, as I escape upstairs. He was supposed to be home by now. The doctors told us he would be. He should be here. Or I should be there. Either way, we should be together. 

“I need to see him,” I whisper to my husband in the silence of my childhood bedroom. We were at the hospital just last night, but already it feels like too much time has passed. My husband nods in agreement, tosses on shoes, and snatches his car keys from the dresser—neither of us at all sure why we are in such a hurry. 

We fly through the motions once we arrive—check in, name badge, elevator button, lower level, down, down, down; a moment of pause—unaware of what waits for us on the other side of these metal doors. They open. We rush through the halls as we bypass any formal hellos the personnel shoot our way. I must get to him. We push open the door to his room and are stopped at the entrance. Stopped. A familiar face with a worried look greets us. Our two-week-old son’s care nurse asks if we’ve heard the news. The news. What news? My heart pounds. I can barely hear her over the high-pitched ringing in my ears.

“Your son.” 

Yes?!? My mind races, but I can’t seem to speak. What about my son? 

She continues despite my silence, “Your son came down with a fever last night. His surgeries have caused an infection. A life-threatening infection.”

Time slows to a halt. I am numb. The room around me goes fuzzy. I can’t breathe. Her mouth moves up and down, up and down, but I hear nothing. It’s white noise to the panic as it pulses through my veins. How can every sense in my body be heightened and dulled at the same time? 

Doctors join our nurse and speak a thousand words a minute. Occasionally, a terrifying phrase becomes amplified—blood transfusion, central line, isolation. This is all I hear through the otherwise static that has become my reality. Papers are shoved at me. I can’t hear the doctor's voice, but the sound of the pen, as it scrapes and scratches across the line while I sign my child’s life away to these talking heads: this I can hear crystal clear. The deafening noise screeches against my eardrums. Time stands still.

I have to get to him. My husband fields phone calls with the surgeon and updates worried family members. I have no idea how long I’ve stood in this room with my baby behind an isolated glass door, but it’s been long enough.

Where is he? My eyes plead. A gown, mask, and latex-free blue gloves are thrust at me by the generous nurse who picks up on my silent distress signal. She leads me to an empty room, void of any human contact whatsoever, and slides the door open in slow motion. 

There he lies. My baby boy. Alone. In an isolette chamber. IV tubes, internal and external, expand along the confines of his tiny 6 pound, 14 ounce body. Brand new. Brand new and broken already. I inch towards him. Afraid all of a sudden to approach. My somber eyes meet his deep gray ones. I shatter—into a million tiny pieces. My shaky plastic hand rests on the top of his sealed isolette. Tears flow from the deep well in my soul. 

“I’m sorry.” It’s all I can choke out. I’m sorry I wasn’t here when you needed me.

***

I’ve always been a cautious person. I spent my childhood in observation rather than participation. Home videos capture my six-year-old-self as I bobbed up and down like a buoy at high tide in the corner of my older brother’s birthday party. I wasn’t pressed up against his side, eyes peered over his shoulder, in some desperate attempt to get in on the action or excitement—no. I hugged a wall and enjoyed the celebration from way over there. Never once did I stop to think I may be missing out on something.

As an adult, I’ve done much of the same. 

The thing about mothering a child with a disability, though, is it requires an all in mentality. It demands you swing high and low; nurse joy and grief simultaneously. Your heart is on the line and the bereavement is unique. It doesn’t have a traditional face. On one hand, it feels like loss. Loss of the type of life you figured your child would be given. On the other hand, it’s not fully a death. Death is at least the end of something. The sweet and final release of all pain and discomfort. 

Not so, in the case of my son. Instead, there is a perpetual sorrow, even in his miraculous life-lived. Daily reminders: when the dog licks his lifeless, immobile feet; acutely aware there is something not quite right about them. Not to mention surgery after surgery, one “wait and see” prognosis after another. The only thing more unnatural than a mother who leaves her newborn son in the arms of a stranger to care for, is one who lives a lifetime beside her boy, helpless, as she watches him carry a burden he was never created to hold.

I couldn’t have known. What being his mom would do to me. From the moment he was ripped from my body I would live as someone wholly other; clueless of how to breathe when I wasn’t connected to him anymore. I would need to take each next step forward without assurance of where it would land. 

***

He’s 10. We walk the long, dark hallways, disposable blue masks cover our nose and mouths—the irony of life repeating itself.

He’s nervous, this tender-hearted boy of mine. “Have you ever been in one of these?” he asks once inside, as he approaches the MRI machine that will take hours to scan the length of his spine and canals of his brain.

“Yes,” I say.

“When?”

“Ten years ago—with you.”

“Were you scared?”

“Terrified.”

“Of what?” he wonders.

“Of all that I didn’t know.”

***

Would I do it all again? To know him. To love him. I don’t think the pain-adverse me could have done it. Not if she had known the turmoil that lay ahead.

Left in her feeble hands, she’d have given up the very affliction that would become fuel for her soul; the inexpressible joy as she’d watch her baby grow into a boy—then the seedlings of manhood beginning to sprout. This boy-man, who’d bear his suffering with courage, never once slipping into despair with the unfairness of it all. Instead, he’d show the world how to experience healing through broken nerves and spines; redemption through broken hearts.

The not-knowing, then, maybe that’s the grace. 

Guest essay written by Haley Shamblin. Haley is a mom to three, by role and trade—lover of the written word—obsessed with nature, simplified living, and opening her home to the masses. Being in ministry as a pastor’s wife has led her family from California, to the Pacific Northwest, and now to the midwest, where she’s recently settled into the heart of Chicago. She writes in the margins as she raises her brood. You can find her on her Instagram account.

Photo by Jennifer Floyd.