When Zephyr’s third and final central line was removed and we no longer had direct access to his bloodstream, it was difficult for me to internalize. His infancy had been shaped by that line, and once it was gone I was haunted by the feeling that he was still open, vulnerable to the world, strung through by a ghost line that I could not remove.
He’d had a central line since he was four weeks old, and that strange extra appendage was a constant visible reminder of his condition. A part of him was always covered in plastic, sealed off from everything including my own touch. And beneath that was an undefended pathway into his body that was never allowed to close, a wound that was never allowed to heal.
That line had come to seem like a part of him, so how could I truly believe that it was gone?
Zephyr’s life before the line was a blur. He was born, and shortly thereafter diagnosed with retinoblastoma. I had a mere handful of days to get my mind around the diagnosis before we found ourselves in Great Ormond Street Hospital, signing consent forms for the surgical insertion of his Hickman Line.
It is hard to describe the intensity of those days. I felt absolute desperation for clocks to stop, for the world to cease spinning, so I could get a little more time with him just as he was, so perfect and new, before things were done TO him, before he was changed.
At that moment I was more preoccupied with the line insertion than even the upcoming chemo. Everything about it felt wrong; handing over this creature who just a few weeks earlier had been nestled inside me, peaceful, undisturbed, never having even experienced air or light, this creature to whom the world was so new, fuzzy, bright and loud - to slow his body and brain to near stillness and do violence to that body felt like a desecration.
He would no longer be solely what I forged inside my own body. He would be part foreign material. Part someone else’s construction.
That morning I held him while the mask was placed over his face and he struggled against the static-filled darkness pulling him under. As soon as he went limp, we had to leave him with strangers.
Hours passed and he was returned to us transformed.
I expected something clean and precise, sterile like a hospital room - but when they brought him back, naked, clumsily swaddled in hospital blankets, awake but not really there, he was still caked with blood and the dressing covering the line entrance site was already peeling at the edges. There was a gash in his neck, stitched and angry, that no one had prepared us for and no one explained. And I knew then that the scars would form, and he would never be the same. Nor would I.
I felt the intense vulnerability of his little body, so freshly emerged. They had taken what was closed and cut it open, taken what was connected and ripped it apart, taken what flowed and put something in its path.
In inserting this line, we began the slow process of turning him inside out.
You are pregnant with a child, and your body is their home, their life support, their nourishment. Your blood is theirs. Your food, theirs. Your antibodies, theirs. You share everything.
And then that umbilical cord is cut, and things change. The child begins to be shaped by the world beyond your body - their lungs, skin and senses bringing the outside in. But, if you are breastfeeding, for that first half-year most of what goes into your child is still produced by your own body, an extension of the umbilical relationship.
That changed for us with the line. Part of the pain of it for me was accepting that other people would be putting so much into him - chemotherapy, antibiotics, pain and anti-nausea medication, etc. He even had several blood transfusions - the inside of a stranger’s body becoming part of his own.
A child is born of you. You fill them up with good things - good milk, good nutrition, good touch, good ideas, good feelings. And then day by day they grow more and more of the world and less and less of you, as it should be.
But this was so sudden.
My newborn was no longer just of me. His veins flowed with someone else’s blood. He was part plastic. Part chemical. Part lab creation.
When I held him, I could feel the line dangling there between us.
Sometimes it was beautiful watching the blood being pulled from him so effortlessly, no piercing or pain required, or the medicine being pushed directly into his bloodstream, knowing it would get to work immediately.
But this ease came with vulnerability and risk. They had placed in him the perfect plastic pathway for bacteria to make their way straight to his bloodstream, potentially even to his heart. After several months of treatment, he got a staph aureus line infection not once but twice, each time requiring long hospital stays, lots of antibiotics and a line removal and surgical reinsertion.
From four weeks until seven months of age, Zephyr seemed inside out. Via ultrasound, I peered into each of his organs. I watched the palpitations of his heart as specialists scoured it for bacterial vegetation. I constantly saw his blood pulled through tubes, sucked into syringes and dripped into tiny containers to be sent to labs for analysis. I followed his pulse rate and oxygen saturation on a flashing screen through many long nights, the motion and flow of his body taken from him and turned like magic into numbers.
I have had to think about and see the inside of my son’s body and how well it was performing so much more than most parents. It is hard for me not to see through him a little bit, even though there is no clear pathway inside him anymore.
Zephyr has been punctured with so many lines, cannulas, and catheters, filled with so many holes, that when he had his first real bath at seven months, I imagined the water moving into his body like he were a sponge. When he drank water, I imagined him leaking like a sieve.
I never saw Rio this way. Rio seemed watertight, a body to himself. I never questioned his solidity. I never worried about his porousness.
It's hard for me to see Zephyr as the solid, robust, growing little boy that everyone else sees. Instead, I see my sweet child in layers. When I look at him I don't just see his eyes but I see into them, all the way to the retinas. When I look at his torso, I see a map of channels to his heart and beyond. I see the mechanics of him. And I don’t know how to unsee it.
His growing autonomy is the one thing that helps change this perspective. The more I’ve seen him want to do something and put everything towards learning how, and the more I see him taking charge of his own body, step by toddling step, the less vulnerable he seems.
But also less a part of me. Which is hard in a different way.
So even though the line is long gone, the ghostly feeling of it remains. And as we head into another intra-arterial chemotherapy treatment tomorrow, where Zephyr will once again be pierced and threaded through, I feel more keenly his violability.
The truth is that the solidness I wish to see in him is an illusion anyway, and the permeability I wish to forget is closer to the truth. We are all permeable. We are all big nets, loosely strung together for a little lifetime, constantly changing as things around us filter in and out.
I think perhaps it is tempting to see the ones we love as solid, as semi-permanent. But the truth is we are wildly fragile, temporal and ever-changing. We are transformed daily by osmosis and diffusion. We are never just ourselves, but become little bits of everything that surrounds us.
I see this truth more clearly with Zephyr than anyone else. Perhaps instead of trying to unsee it, I can use this x-ray vision I have acquired with him and try and see the world and the people around me more clearly. Perhaps I can become more regularly cognizant of our temporality, of the beautiful fragility of these human bodies and hearts that can seem so solid and individual, but are really just so many molecules dancing together for the length of a song.
If you enjoyed this piece, don’t feel shy - let me know by ‘liking’ it or leaving a comment. Hearing from you helps motivate me to work on the next piece <3.
I’d also be honored if you’d share my work with anyone you think might be interested.
Such poignant detail. I can feel the pull on my own heart, I can glimpse everyone's fragile being. Through you, Pacifica!
Pacifica,
You express so much, and remind us of the temporary time we have in these bodies. Remind us of the torment you as a mother have go through