I could not touch her or bring myself to pick her up for the first few days in the NICCU.
The shock of her rare diagnosis and traumatic entrance into the world had shoved me to the sidelines of parenthood. I remember trying to weave my hands around her medical harnesses and thinking “how can I touch her without hurting her?” As if that fail were not spectacular enough, I knew if I did brave picking up the tiny child behind the machines that I would drop her from my shaky hands, wobbly legs and broken heart. Instead, I sat bedside, hovering, methodically monitoring the machines for normal ranges, beeps, kinked lines, IV retractions, breathing patterns: my eyes, and not my hands, were my primary parenting tools. I became the Watcher. The Spectator removed from my own child.
Parenthood as spectating continued on, testing my skills and limitations as her Mother.
When your child is medically complex, invasive procedures are standard experiences. Early on, you watch your child be tested, poked, restrained, sedated, cut open, sealed up and handled mechanically. You watch from across the room where you have been placed, your child in pain, trying to pace herself through it all. You spectate and snap vivid, visceral images into your brain of parenting from afar. You find ways to connect with her as you spectate. Parenting evolves into signals and cues to get her attention; to focus through the pain together. You throw your presence to her as far as you can, to land on her as she needs it. You force your energy but still you are the spectator to her experiences. You watch your child become transformed by her lived experiences and you see her infused with knowledge of the world beyond her years.
As the Watcher, you continue to see her managed by others: nurses, surgeons, paediatricians, dieticians and specialists. You sit and watch during appointments and procedures. At night when she’s in pain and cannot bear the weight of touch, you literally watch her writhe and thrash. You spectate her pain until she can tolerate your touch again.
Parenting this way tests the boundaries of communication and love. Spectating becomes you. As the Watcher, you move through life differently. My identity as Spectator turned outward into all other facets of my life. I watched the world with contemplative eyes and viewed who I was and my relationships, under harder scrutiny. As Observer, I was catapulted into a beautiful realm with sharper highlights and dramatic shadows making it easier to assess joy, gratitude and ugliness. Everything becomes artistic, organic and completely palpable as the Spectator. Watching her endure meant I could do more and be more effortlessly because it all pales.
I picked up the camera shortly after her diagnosis and literally withdrew further into spectatorship. Behind a lens I learned to see the world completely differently: poetically, fluidly, emotively. Moments and experiences transcribed quickly into memory and history. My life is now catalogued by naturalistic observation and my recall is reproduced through images and feelings as though removed from my own body. It’s beautiful and hurtful.
I will continue on as Parent-Spectator and watch all that she overcomes with easy grace. There are fewer challenging situations I have known than surrendering traditional parental instincts to sit and watch my child maneuver her way through the unfairness of rare disease.
The greatest wonderment in spectatorship comes with being marveled and completely bedazzled by all that a tiny human spirit can accomplish. I am propelled to move forward knowing all I have seen from her, bared witness to.
Nothing, is insurmountable.