BY NICOLE MINER

Introducing one of CPN’s 2022 Bloggers in Residence: Nicole , Mother of Camden

How will I be brave today? Where will I find the courage I need to love with abandon even if in that loving I will experience a sorrow so deep my heart already aches?  These are just some of the questions Nicole and I discussed in a zoom call last June – a call that occurred after she submitted the most exquisite blog poignantly connecting the Japanese tradition of repairing broken ceramics with gold to caring for and loving her son Camden.  CPN is honored that Nicole has agreed to continue to explore these questions and more with all of you as the newest member of our Blogger in Residence team. Welcome Nicole!

As December dawned in 2020, it seemed as though the world let out a collective sigh of relief. The strangest, most heartbreaking and deeply challenging year was coming to a close, with the holiday season providing distraction enough to continue through to the end. In my corner of the world, the dawning of December meant that Camden was days away from completing a complicated and nuanced month-long treatment plan for infantile spasms.

Together we, but mostly he, had persevered through up to twice-daily injections of a high-dose steroid, three additional (now forgotten) medications to manage the subsequent immunosuppression and various other side effects, weekly clinic visits for blood pressure and blood sugar monitoring, and a five (four? six?) day hospital stay after the initial diagnosis while we waited for insurance to approve and ship the unbearably overpriced medications. Nevermind that, two weeks prior in mid-November, Camden’s neurologist confirmed that the first-line treatment had failed and we had added an additional medication. We were simply grateful to reach the end of this chapter.

December, however, had more in store for our family, starting just after dawn on the first day. The highlights include: Camden vomiting the majority of his 6am and 9am feedings; a day-long mama-son date in the emergency department; a diagnosis of hydrocephalus; an admittance to the hospital, followed by an emergent transfer to the PICU, followed by an emergent intubation; a successful shunt placement surgery; a six-day stay in the PICU plus a six-day stay on the neurosurgery floor; and two additional admissions later in the month to address various complications and challenges.

Somewhere in the midst of the organized mayhem of the hospital, I received a call from our genetics team. While Camden was ‘inpatient’, the Children’s Hospital Foundation could offer what our insurance companies had deemed ‘unnecessary’: comprehensive genetic testing for our boy. Since Cam’s birth, we had been eager for answers about his being and what the future would hold and agreed to the testing.

After more time spent in the hospital than our home that month, we found ourselves finally at home. In the non-descript period just after Christmas, we gathered on Camden’s bedroom floor, logged onto a video call and learned the long-sought name for our anomaly of a boy. December 28th, 2020 – forever our diagnosis day. December 2020 dawned with chaos and ended with something akin to closure. With a distinct and final  diagnosis, we closed a chapter of uncertainty and ambiguity and entered a new season, with certainty that Camden’s end would come far too soon.

As I write this, in December 2021, an entire year has passed. Camden’s hospice team recently placed us in the ambiguous box of “days to weeks of life expected.” I do not know if he will outlive the first anniversary of his diagnosis day, if he will wake up to experience the start of a new year, if there will ever be anything more precious or heart wrenching than watching, counting, waiting for Camden’s next breath, so that I do not miss his last.

December 2021 presented a choice between the calculations and invasiveness of the PICU and the comfort and peace of home. We lived the former last year and have chosen the latter. How ridiculously horrible and outrageously merciful to be able to make that choice for our child. There are countless books dedicated to guiding parents through sleep training, raising kind and curious kids, tantrums, potty training and so on; those books proved useless for Camden, and there is nothing that prepared us for this.

In the first weeks of 2021, following Camden’s diagnosis at the end of 2020, we began meeting with the palliative care team at our children’s hospital; the primary provider introduced us to CPN where I found many mirrors that reflected various thoughts, emotions, and questions I was encountering. We are fortunate to live in one of the handful of cities in the States with a dedicated pediatric hospice organization and began working with them soon thereafter. Weekly, if not daily, our hospice nurse reminds us that the ‘right choice’ for Camden and our family is the one that feels best in our hearts.

Each of these communities, along with a handful of beautiful friends who have walked their own paths of loss and grief, offers recognition and affirmation in a world that has become unrecognizable. As 2022 looms, with no end of the pandemic in sight and with Camden’s passing too quickly coming into focus, the only remaining buoy in the maelstrom of our life may be these — the reminders that we are not alone.

I wrote the words above on December 28th, 2021 with Camden by my side. We spent the next two days this way, side by side, always under a nest of blankets and stuffed animal friends, with the glow of holiday lights providing hints of warmth in a dark time. Camden’s life with us surpassed the one year anniversary of his diagnosis day but he went to his heavenly home the morning of December 30th. I fully lived into each moment of this journey, and yet I cannot make it through a day without uttering, “I cannot believe he is gone.”

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.