She stood next to me, pen and clipboard in hand. We watched a small boy on the bed. It was a scene with a heartbroken dad, confused toddler and angry almost-kindergartener. The older of the two is the one on the bed, tied to the many lines going to his hand, tying him and us both, his parents, in knots. I floated through the hallways, trying to find footing only twelve feet above the place where my own life cracked and dissolved before me, twenty-something years before. “So, how are you?” she asks and in my haze I don’t see the pen poised above the chart.
Stumbling for words, falling over myself, over my shattered heart, I cry, I rage, I tell her I could never imagine being here. I tell her that I have blamed my parents for the better part of twenty years. How could I now make the same decision? They crippled me, I cry. They ruined my life.
They also saved it.
I am caught, I can feel it, between the rock threatening to crush me with its heart shattering reality, and a hard place of the unthinkable.
He could die.
But to save him, I have to poison him. I have to cripple him.
“I have PTSD,” I tell her. “How could I not?” It’s been decades of putting myself back together, of limping through hallways while my classmates ran ahead of me, passed me by. “The smell of the Tegaderm makes me want to vomit,” I say, “Please note it in the file. Please use something else to cover all those pokes.”
I cannot stay present with my sweet red-headed child, soon to be bald, if I have to smell that chemical concoction. It brings me back to my own bald head, racked with headaches so bad that they might just kill me if I bring my body to standing. It brings me back to the numbing cream, meant to bring relief to the collapsing veins. A guinea pig for them, two decades before, to find if they could put our small bodies through levels of toxicity that would kill adults without the additional surgery of a port. It brings me back to those clean diapers that they would fill with water and warm in the microwave, and wrap my hands in to coax those shy and hurt veins to the surface, out of hiding, so they could poke me once again - hands, wrists, feet, ankles. One by one those veins collapsed and they had their answers. That smell, it brings it all back, and more.
She nods, makes a note in the file, and I am grateful, for a moment, to have someone to listen. This is the unthinkable war that I always knew, on some level, I would fight again. But damn it, I fucking prayed for this day to never come. They all told me it never would. They all told me that it was unheard of. No mother has ever given birth to a child to have the same cancer. Not this one, it’s not genetic. No, your cancer as a teen will not cause your children the same trauma. “Are you sure?” I asked, time and again. “Are you sure my babies won’t have to walk this path? Because I won’t do that to them. I won’t have children if that’s what will happen.”
“It won’t.” Doctors, nurses, specialists alike. “It’s never happened before. It won’t happen to you.”
So I brought forth my miracle babies. The ones no one was sure I could have, after more than 2 years of chemo, starting at thirteen. I began my period while on chemo, another unheard of feat. My oncologist almost danced when we told him. My mom equally glowed. At thirteen, I would have been happy to sink into the floor in shame. Bleeding is not something to be celebrated, I knew, even then. A woman’s shame. But here, it was a sign of miraculous presence. I bled! Perhaps I would have babies after all. And then, against all the unknowns, I did. Two, beautiful, amazing gifts from the Higher Realms.
And now, less than five years after the first of my miracles lay in my arms, there he lay in bed. Tied to monitors. And I was proving, once again, that I have never followed the rules very well. I have always been unique, always known there were things coming that no one else could have predicted. Things that they swore were impossible.
Well, my impossible worst nightmare was now my living reality.
“I’ve made the note to stop using Teg,” she tells me, with sympathy in her voice. In that moment, she’s my ally. I am grateful. Of course they understand how I might be reeling. Of course they understand that this is the worst imaginable scenario and I am struggling to breathe. Of course, because what they are all there for is to help us keep breathing. Right?
“I can’t believe I have to give him chemo. I can’t believe I have to poison my baby." I can’t believe I have to make the same horrifying choice, made more impossible by my own knowing of what was to come. I thought, even then, that I knew what was coming. And I did. More than any other parent on that awful floor. I knew that those three years they were having us sign our rights away to would follow us all our lives, all his life. That this battle would be far from over when they stopped pumping him full of drugs. That this acute crisis that they kept trying to make sound less soul shattering would be a chronic diagnosis. That we would now never be free of the childhood cancer world. I knew.
“So, have you decided then?” she asks me.
“Decided? What, if I’m going to kill my child or poison him and possibly save him? It’s never been a fucking choice. Of course he’ll get the drugs. It breaks me into a million pieces, and I wish none of us ever existed, but it’s not a choice. Of course he needs the chemo.”
And even through my haze, I see the relief on her face. She makes a note. She breathes relief.
What the actual fuck.
It comes crashing in, even on this most horrifying of days. She’s just made a note in his file that he can, indeed, stay with his parents through this nightmare. That they won’t rip my child away from me, to pump him full of the drugs they are sure is in his best interest. And I realize, with a sickening thump as my stomach hits the floor and my knees almost follow, that I came this.close to losing my first born to a social work system convinced of its intelligence and sanctity. And this woman, clipboard in hand, and sympathy in her voice, has been pumping me for information, to find out if this child would become her charge.
“You would have taken him away from me, wouldn’t you?” I say, already morphing into the Mama Bear, claws ready to rip her to threads. But my energy betrays me, and my voice breaks instead, and the tears come cascading down my face. “If I told you we were saying no to chemo, you would have taken him away from me.”
It’s too much for her, this truth telling. Manipulation and conversations with medical teams behind closed doors is more her speed. This mama with PTSD and a child crying behind this glass door, a husband walking like a ghost through the hallways, and a toddler confused beyond words, this mama is about to unravel in this cheery fucking hallway.
“Well, um…” she stutters, “the policy… the child’s best interest…” And she backs away. Her services no longer required, to let me collapse against the door in fury and rage and absolute powerlessness. She’s tied my hands behind my back. Suddenly, I see more clearly. There are no allies for this war-torn heart in this hallway. They’ve been scheming behind closed doors, watching me from afar, making notes in the file, to build the case, just in case I said, “No.”
“No, you may not give my child drugs that will cripple him, that will kill the nerves in his hands and feet, that will cause him neurotoxicity, that will cause learning disabilities, that will bring countless surgeries for his lifetime, that will fill his days and nights with anxiety and depression and flashbacks. No, you may not age his body thirty years in three. No, you may not cause secondary cancers and organ failures. No, you will fucking not destroy him like you almost did me. NO.”
But none of that comes out of my mouth, no matter how much I wish it could. How much I still wish it could have.
Instead, I would bite my lip and pick up that pen with a shaky hand, dripping tears onto form after form as I sign away any responsibility they may have long term. I will sign those papers and agree that yes, you may kill the nerves in his hands and feet; yes, you may poison his brain; yes, you can traumatize him time and again and again.
Because please God, let my baby live. Please Goddess, let him live.
They have given me no choices, no options. It’s this or die. And as unthinkable as this reality is, I am simply not willing to survive in a world where I bury this child. Not my miracle child. Not the heart of my heart. And this horrifying non-choice is the only choice I have. It’s the only thing that gives him a chance at life. The only choice that keeps him with me, with us. It’s the unthinkable choiceless choice.
I sign the papers. Later that day or the next, they all blur together in this sunless place. Hands shaking, heart-broken, tear-stained and held together with tegaderm and paper tape, I gather my Self and my Soul, and I sign the papers. And I know, for now, I have held off one demon, kept one monster at bay. My child stays my own.