BY NICOLE MINER

The day started with a brunch full of bagels, talk of our Camden and their Myles, and deep, authentic, soul-filling empathy. It was one of those mornings where I dared to linger in the home of  new friends, and then linger longer, and only thought to question it after the fact. 

How could I step away from the photographic archive of their darling boy? How would I be more understood than in that light-filled living room? How do you fill the space that remains when a life ends far too soon? A morning spent with my new friends, Julie & Matt, now bereaved parents, was a balm on my anxious soul.

Kyle, Camden and I eventually left, the routine of medications pulling us back home. This, too, was understood by parents who longed for their boy who needed them for care and medications, for a boy who was still here. 

I slipped my Birkenstocks back into place and, as I glanced toward the floor, saw two shoes with velcro closures. Shoes, orange and blue, and a third of the size of mine. These shoes looked too new. They were; they were waiting for the return of a foot that left too soon. They no longer had a utility but that was not the point – they were purchased for, worn by, and reminded us all of Julie and Matt’s darling boy so by the front door they remained.

The two pairs of shoes Camden owned were never intended for walking; indeed we gravitated toward the moccasins that never stayed on his foot for long in the first place. In the shuffle of settling Camden and his oxygen tank and feeding pump backpack into the car, one moccasin that had wiggled free was  picked up and placed on the roof of the car. I reminded Kyle of the location of the shoe, Camden was buckled, and then we were on our way back to our quiet home. 

It was at home that the realization struck: “I didn’t take his shoe off of the car.” I offered forgiveness, asked our friends to be on the lookout, and moved onto medication and our care routines. But I was the only one; my husband, Kyle, met my gaze with red, tearful eyes. The shoe was gone. The shoe that Camden most often wore. The shoe that garnered compliments from every mama-friend, the shoe that was his. 

Kyle initially wanted to retrace our route home, to find the moccasin that surely would have blended in with the collections of brown, fallen leaves. I offered him the time and my support to do so. Perhaps that was enough for him to pause, breathe, and collect himself – he would stay, to be with me and Camden. 

One day, a day that will arrive far too soon, all we will have are the things. But for now, this precious now, we have Camden with us. And all sweet Camden wants is for us to be with him. “Everyone is here,” we announce and affirm to him at least 20 times a day. Everyone is here, and though he cannot comprehend it, here and now with him is everything to us. 

Those who have walked the road of parenting know that becoming a parent will change your life. What we never could have foreseen is how becoming parents, in the midst of a global pandemic, to a medically complex surprise of a child would change everything. For me, the changes, though far less drastic, began soon after becoming pregnant – changes to the activities I could participate in, the foods & drinks that I could consume, the way my entire being felt and moved through the world. I, some days more gracefully than others, adapted and redefined what added quality to my life. 

The start of the pandemic led to another iteration of what I could see, do, or pursue to fill my cup. And then a new definition was born as I met and learned to parent Camden. And even today, one and half years into this journey with our son, it seems that each week, day, hour demands that I redefine what a high quality of life looks like for myself, my son, my marriage. 

In the early weeks of Camden’s life, I realized that there would be no baby book of memories and milestones, only records kept by doctors, nurses, therapists. I recognized and resented that our family sleepovers would not occur in a tent among the trees in the mountains of Colorado, but in various rooms of the Children’s Hospital of Colorado. I realized that every expectation that I had for parenting and our life as a family of three would have to be put aside, to either be readjusted or discarded in the future.

Whenever our family has the opportunity to do something or go somewhere together, it is a pure, albeit carefully timed and calculated joy. But the simple act of being with each other is the blessing. Even on the days when I want more, different, greater, the being has to be the blessing. When all of the going and doing and experiencing ceases, being is all that remains.

This has been the aftermath of the combined forces of a global pandemic and a medically complex, fragile boy. The reality is that remaining in the present moment and living as if everyday could be his last is exhausting. I cannot do anything, much less constantly looking for the end, for long before the exhaustion sets in.

But when I focus on being, there is a bit more ease in the air of our home, in between the words we speak to and the hugs we offer one another. There is more room for self-forgiveness, for the times when I am not vigilantly present. There is room for mourning: the unfairness of this situation, the shoes that are missing little feet, and all of the what-ifs that will never be realized. 

There is space to collect, hold and keep the things that define Camden’s life here. Space to take too many pictures that, admittedly, all look the same to you at the end of the day. And space to sit and linger in the light or anger or sadness of the moment I am in. Better yet if the lingering occurs around a table with dear friends, sharing a batch of homemade bagels.

The replacement moccasins that I purchased after this brunch, at the end of November, arrived a few days later. I have detailed the trials of December 2021 in a previous post but, for the purposes of honestly ending this story, the most pertinent and heartbreaking fact is this: Camden never got to wear his new moccasins. The shoes remain in the plastic in which they arrived and will, perhaps, one day be reverently passed on to a little sibling. Camden’s single, worn tan and shearling shoe now resides in a ‘memory box’ frame, next to a picture of his beautiful face; now, all we have is his shoe and we miss the boy whose feet filled it every hour of the day.

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.