Seeing the light through my daughter's blindness.

And how I follow her lead.

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I placed my fingertips on my daughter’s eyelids and applied gentle pressure to keep them from flicking open. I’m not sure if it’s a blind person’s problem, or if it’s just her problem, but she can’t close her eyes and keep them shut on command.

Only as she falls asleep do her eye lids shut the world she cannot see, out.

I leant towards her, close enough that isolated strands of her hair tickled my cheek. I closed my eyes and smiled at the whimsical and unexpected touch. I felt her body soften as she settled into the test conditions. I started heart coherence breathing and focused on the slow rhythm of breath that maximises heart rate variability (HRV). A good HRV indicates the body’s ability to adapt to stress. As a medical mum, a special needs mum, and a young person with a disability, we’ve had our fair share of conditions that have induced fear and stress, all of which have stretched our window of tolerance to the unfavourable conditions of hospitals, medical tests and procedures.

We breathed in two, three, four, five and out, two three, four, five. Five seconds for every inhale and exhale gave me six breaths per minute. Five rounds of six breaths would take five minutes, the amount of time Mackenzie was instructed to close her eyes without moving or speaking. Tricky for a child who loves to talk and flaps and wiggles and contracts her body to know where she is in space; her body makes up for what her vestibular system lacks from her sightless eyes. The erratic movements offer feedback into her nervous system and tells her brain things that her eyes can’t.

To stop her speaking and moving is like putting gaffer tape over her mouth and strapping her into a straitjacket. But she knew what she needed to do. She has learnt to adapt. She knows how to switch gears to get the best data; to be the best patient.

The therapy assistant sat behind us watching the squiggly lines on the screen. Mackenzie was having an EEG to measure cortical activity, the electrical patterns of her brain, creating a map and story of the way her brain works. Minimising a rise in brain waves through physical movement and activity, I edged closer to her. I breathed in two, three, four, five and out two three, four, five. Without asking, her breath married mine.

We’ve sat together in testing rooms, waiting rooms, and surgery rooms and nestled into the safety of each other’s body, breath and energy to get through the next test, the next result, the next appointment. Co-regulating our breath has moved us through the ticking of clocks and beeping of machines in spaces made for sick people and dying people. She’s been both, at times. We know how to be in the medical world. We know the drill.

Our breath was perfectly synchronised. No separation between her body and mine. We breathed in two, three, four, five and out two three, four, five. As we finished the third round of breathing, three minutes in, I thought about every parent that has sat in a chair, beside a bed, behind a curtain, outside a door, or on the phone while their child was poked and prodded, cut and stitched, documented and wheeled, tested and scanned within the walls of a medical facility, just like me.

I could hear their cries and feel their pain beating in the silent thud of my heart against my chest. Mackenzie’s body softened under the wired cap on her head that identified too much activity in the left hemisphere and not activity in the right (#autism).

And then I thought about all the neurotypical teenagers jumping onto buses, finishing dance classes, going to work, shopping online, and researching university degrees while mine was hooked up to a machine that would provide intricate information about the ongoings of her brain and guide an intense neurological therapy program for the next six months. I breathed in two, three, four, five and out two three, four, five.

With three more breaths and thirty seconds to go, I let the thoughts of others move out of my mind and noticed that we had become so still. I was present to every sensation in my body, the incessant chatter of other patients beyond the walls of the testing room faded into the distance and a peace was humming between us, a connection so intimate I couldn’t tell where her breath ended and mine began. The edges of my mouth turned up into a little smile, grateful for the world that lives between us where words are not needed.

Yoga, cathartic breathwork practices and meditation have taught me to regulate my breath and still my mind, so that I can be mindful and accepting of the conditions of each moment, no matter how peaceful or challenging they are. I had the perfect training ground for implementing the tools and knowledge into embodied wisdom, because chaos lived around us in the early years of Mackenzie’s development. So much was unknown. I put her on my back and carried her through her life, figuratively and literally, navigating unexpected twists and turns, and she learnt to follow my lead.

But the clincher is not that I have been guiding her. But that she is leading me. I am capable of weathering the storm, of holding the light, of carrying us through those moments where conversations are uncomfortable, tests are strange, needles are scary and hospitals are sterile, because she took me into the eye of many storms and said, get me out, safely.

She implicitly trusted in my capacity to adapt to her needs and cultivate peace and stillness, presence and ease, in the most harrowing situations. She taught me to do so with patience and acceptance. She demanded I do it without a hint of panic in my body, or fear in my mind, so she did not have to worry. To protect her, as a mother does, I did as she asked. I calmed my heart; I quietened my mind. I made everything still and peaceful. I created safety where it felt lost.

We can slow each moment down into a single breath and watch the passing of each exhale. And in that moment, where her hair tickled my face and we danced into the intricate world of oneness, only air between us, and a cap on her head, I remembered that because a darkness blanketed her bright blue eyes, we became each other’s light.