CPN | Finding My Extraordinary People

Finding My Extraordinary People

It was an extraordinary Saturday morning in June. We had awoken to a new day. Waking to a day with both my husband and son, I have learned, is enough to call a day extraordinary, even without knowing what this particular day had in store. 

We were determined to spend the morning at a local farmer’s market. Kyle and I are parents of a beautiful and medically fragile boy with a life-limiting illness, who was born into the isolation of the COVID-19 pandemic. We often felt the absence of and the longing for reminders of life as it felt on a market day – fresh and simple, overflowing with joy, seemingly free of cares.

Yes, leaving our home with Camden required more planning and equipment than a typical child. No, we did not participate in activities like this often, choosing our risks carefully and taking more precautions than most. The days when the opportunity and our capacity aligned were nothing short of extraordinary.

My memory, which I admit is now currently burdened with the grief of losing Camden and the third trimester of another pregnancy, tells me that the day itself was nearly flawless. It was a signature Colorado day: a bright blue, sunshine sky and a slight chill in the air that necessitated morning sweaters for me and my baby boy, with lush trees and blooming flowers still thriving before the heat of summer arrived. 

Once at the farmer’s market, Kyle and Camden found a bench in the shade slightly removed from the crowd, and I set off to gather local coffee and gourmet donuts. When I returned with our treats, Kyle pointed out what appeared to be an adaptive stroller across the courtyard from where we sat. It was certainly a somewhat rare sighting, but not as eminently interesting as my warm coffee or sneaking Camden minuscule tastes of donut icing.

After luxuriating in the family time, the stimulation of the market, the generalized ‘normal-ness’ of our morning thus far, it was time to return home. The path to our car took us toward the adaptive stroller Kyle had spotted. I walked in front of Kyle, who was pushing Camden in his stroller, and now recall smiling in the direction of the woman standing next to the stroller as I passed by.

Then, from a few paces behind me, I heard Kyle’s voice, “hey, look, oxygen buddies!” And indeed, Camden was outfitted with his nasal cannula, as was the brilliantly blue-eyed, red-haired boy held by the woman I had just passed. I decided to embrace the interaction Kyle had created, introducing Camden, meeting Melissa and her son, Sullivan. We chatted about our gratitude for the Children’s Hospital of Colorado and the feat of getting to the market with our boys. 

Melissa immediately struck me as generous with her time that morning and with wanting to share the experiences and lessons she had amassed thus far in Sullivan’s life. Sullivan was about six months older than Camden. Melissa offered her contact information and I took it down before continuing our walk to the car. I could not have known then the ways that this brief, accidental encounter would shape and color my life in extraordinary ways.

Flash forward a few months and past a few health scares, a surgery, and a hospitalization between Sully and Cammy: Melissa had become a trustworthy and necessary part of my life. Our boys both adored their pacifiers and were living with complex, life-limiting illnesses. Our husbands were getting along well! Generous as ever, Melissa insisted that I must meet her friend, Julie, who was on a frighteningly similar journey with her son, Myles. The introduction would have to wait while I traveled to the east coast.

Upon returning, I scheduled an afternoon walk with Julie and Melissa. As with Melissa, Julie I felt an instant connection, a deep and solemn camaraderie. With Camden and his accessories secured in the stroller, we set out for our walk. There should have been two additional strollers carrying darling Myles and beautiful Sullivan. Our group should have been six; instead we were four.  There was far too much space on the sidewalk and in the arms of my mama friends who had lived through the passing of Myles and Sullivan while my family was away. 

Fifteen months into my journey with Camden, I had not been able to fathom the breadth or speak to the depth of the isolation and otherness that I felt.  That is, until I was walking in the golden afternoon light of a crisp October afternoon, flanked by Julie and Melissa. Life with Camden had thus far felt terribly fleeting and ethereal, but with these women I found something more akin to groundedness, sustenance, a way through. 

In spite of the fact that it seemed Camden and I could offer nothing more than a reminder of their loss – something I acknowledged during our first walk – Melissa and Julie offered us nothing less than the best of themselves. They reminded me that the most loving thing I could do for Camden was to remain present. They recalled and shared wisdom they had gathered from palliative care and hospice providers, authors and podcasters. They were and remain beautiful and broken examples of how I could and would carry on after saying goodbye to Camden, which would happen just months following our first walk.

We didn’t dream of being in this club, caring for medically complex children, navigating the end of their lives, and then carrying on with the grief of losing them. We would never wish this shared experience on anyone. But in this club, facades have no place, acceptance is broad, and friendship begins with the darkest thoughts and feelings instead of the socially acceptable platitudes we have been taught. 

Being here, among women who have walked a similar path is grace-full, even as the path itself is so utterly, grace-less.

When I return to my memory of the first walk with Julie and Melissa, I look around and see the high desert grasses fading in the autumnal air, and feel the presence of my new friends. I am reminded of the provincial nature of autumn, a season once set aside for the harvest.  The lives of each of our boys was the harvest we labored over, and the bounty is still for the taking. And that is the work we continue, separately and together: we take and take and take all of the beauty that Cammy, Sully, and Myles’ brief lives offered, and we learn to let it be enough.

The brevity of our sons’ lives is an inescapable truth, an infinite source of grief and loss. Myles, Sullivan, and Camden joined each of our families earthside throughout 2020; in the same order in which they entered this world, they joined one another in the journey beyond and away over the course of 2021. They are irrevocably bound to one another, an infinite source of comfort and joy to the mamas they left behind.

This is a terrible journey, but I am certain it would be even more terrible to walk it alone. Thanks to the providence of God, a gift from the universe, and a fair bit of luck, I never will know that feeling of ‘otherness’ again. We are the ones in a club that no one ever wanted or should ever have to join. We share and are fluent in the language of grief; our friendship, sisterhood, was forged in the ashes and through the tears. We fight to carry on with and for one another each hour of every day. And though I now wake each day to a world without Camden, Melissa and Julie – and our friendship – are stunning reminders of how life was and can continue to be extraordinary. 

Nicole Miner has a background in nursing and public health, and became a mama and full-time caregiver for her first child, Camden, in July 2020. Camden was born with a rare, neurodegenerative condition, Schinzel-Giedion Syndrome (SGS), and spent eighteen beautiful and challenging months earthside before the disease progression took him to his heavenly home. Nicole is spending her days in Denver, Colorado soaking up as much sunshine as possible, reading and writing, and preparing home & heart for Camden’s little sister who will arrive later this year.

 

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