Winter Journal: Conversation

The valley whispers of change as night settles in. Leaves rustle secrets to one another, and the stream murmurs its eternal song. Inside, over the remnants of dinner, I face the conversation I’ve been dreading for three long years.

Sharp as a hawk’s, my son’s eyes have tracked my decline. He knows the name of this thief stealing my strength but not its true nature. It was only a matter of time before someone else painted the full picture for him, or worse, he pieced it together alone in the dark hours of night. In my heart, I knew the kindest path was to be the one to tell him – directly, gently, with the steady calm of leaves drifting on still water.

I chose this night deliberately, gifting us the weekend to process, question, and simply be together in the wake of hard truths.

“What do you know about the disease?” I begin, my voice soft as moth wings.

His knowledge is a sketch, rough outlines without depth. So I fill in the canvas, explaining how this illness is severing the delicate wires carrying messages from my mind to my muscles. It’s why standing has become a memory, why each movement is now a mountain to climb.

“This will continue,” I tell him, my words falling like pebbles into a still pond. “Until I can’t move at all. I’ll speak through a computer, my eyes becoming my voice.”

I don’t flinch from the harshest truths. I tell him of lungs that will one day forget to breathe, of the betrayal of muscles meant to keep food from going astray. “Most people,” I say, the words bitter as unripe blackberries, “don’t live past five years with this.”

“How long have you had it?” he asks, his voice steady but his eyes wide with unspoken fear.

“Three years,” I answer and watch understanding bloom across his face.

Questions tumble from him like water over stones. Who else knows? How long have they known? I explain my reasons for waiting, for wanting to preserve his carefree days as long as possible. He nodded but then asked who I had told first and why.

“Your mother has known for a long time,” I say, not hiding the pain this truth brings. “Your sister pieced the puzzle together herself, stumbling upon my medication. I wish I  could have told her like I’m doing with you now. The people at my company needed to know, too.”

I reach for comfort, remind him that tomorrow remains unwritten, that this disease moves with the slow patience of glaciers. “This doesn’t change who you are,” I insist. “I want you to laugh with friends, have fun, and find joy each day.”

My voice grows thick as I speak of my own efforts – to be strong, to be creative in the face of this unstoppable tide. “I’m doing everything in my power to stay with you,” I tell him, meaning every word.

Sorrow wells up, threatening to overflow. I mourn for the shared adventures now beyond our reach, for the milestones I’ll miss, for the grandchildren I’ll know only in dreams. “That’s why I wrote the children’s book,” I explain to my tender, 12-year-old boy, each word weighted with purpose. “Years from now, when you are grown up and it’s your own kid’s bedtime, you can read them my book.   Storytime will still be something we can do together! Daddy and Grandpa can tuck them into bed.”

Silence settles between us, heavy as fog on the valley floor. Then, with a courage that makes my heart swell, Luke reaches out and takes my hand. His grip is strong, a lifeline in this storm.

As night deepens outside our window, I’m overwhelmed with gratitude. Grateful for this time to guide him through the shadows. Grateful for the chance to teach one last vital lesson – how to face the unthinkable with grace and love.

I move onto the back patio to get some air, and, perhaps, to hide a few tears. Down the hill, I can hear the stream continue its song. Life, in all its beauty and pain, flows ever onward.