I became an aunt for the first time on a May morning in 2013. I was up all night waiting for the news, and when I finally met my new nephew, Bryce, over Skype, it was love at first sight: He had fine blonde hair and blue eyes, and he looked just like my brother-in-law. Four long days later, I held him in my arms and it hit me that becoming an aunt was pretty special. There was just something about holding my only sister’s baby that made this different.
I was pregnant with my second daughter at the time, due about a month later. As I cuddled my nephew, my sister and I talked nonstop about all the things we couldn’t wait for our kids to experience together: weekend trips to the farm, spring-break vacations — the list kept growing.
Not once did it occur to me that none of this would ever happen, that less than two years later I would be helping my sister and her husband weigh options about Bryce’s end-of-life care and funeral, rather than shopping for his Christmas gifts. But that was the devastating reality we faced when Bryce was diagnosed with a rare genetic disorder called Krabbe Disease at six months old.
Krabbe is a form of leukodystrophy that affects the central and peripheral nervous systems and strips sufferers of nearly all their capacities: the ability to move their bodies on their own, to swallow, to see, and to hear.
Bryce showed no signs of the disease in the first months of his life, and by the time we began noticing changes in his abilities and demeanor, it was too late — there is nothing you can do after the onset of symptoms.
We were shocked, numb, heartbroken. How could this have happened? Why did this happen? There were so many questions, yet few answers that offered the comfort we so badly needed to accept Bryce’s fate.
The solace came in the form of love and support from family, friends, and total strangers. It came in the form of emotional, physical, and financial generosity. And while none of it made the reality of Bryce’s illness OK, people’s kindness and empathy did. They renewed my faith in humanity and reminded me that despite our differences, we’re in this together.
Bryce died the day before Thanksgiving in 2014; he was 18 months old. I was lucky to spend the last four days of his life with him, holding him for hours and memorizing his delicate features. I had the honor of helping plan his celebration of life, a service that reflected him and the bittersweet beauty of his short time here.
I am forever grateful that I got to know this little boy and learn from him. Bryce taught me — and thousands of others who followed his story — about some of life’s hardest realities, as well as the power of love, gratitude, honesty, community, and resilience.
We created this issue of Experience Life in the spirit of exploring some of these timeless truths: “Love the Ending” is a powerful piece on new thinking about end-of-life care and facing the inevitable. Author Nora McInerny Purmort’s cover story is a reminder that despite loss there’s still humor, and often a renewed sense of purpose.
The truth is, life marches on. It’s what we choose to do next that truly matters. For me, that’s spreading awareness about Krabbe — and about a boy who’s little life continues to make a big difference in this world.
Photography by Chad Holder
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