The question comes in whispers, in texts, in hesitant private messages, and in the sorrowful eyes of the few people who dare to visit. “Has he passed?”
I promise you, I will update everyone when that time comes. The finality of that moment is a reality I haven’t been able to fully grasp, and I know the world will need to know. But the answer, for now, is no. As for right now, he’s still with us.
The silence in our home is a heavy, suffocating blanket, punctuated only by the fragile, uneven rhythm of his breathing and the low, steady hum of the morphine pump. We are existing in a suspended reality, a cruel waiting room between worlds. Per our hospice nurse, an angel in human clothing who speaks in hushed, practical tones that both shatter and ground me, it could be another three days. But then, with a look of profound empathy, he admits, “I also think it could be today.”
There is no map for this. There is no timetable. There is only Bryson. Bryson’s body is the ultimate decision-maker, and right now, it’s working in overdrive, navigating a battle we cannot control, a war we have already lost.
He is in phase 2, the transitioning phase.
That is the clinical term. The human term is… it’s torment. It’s the slow, agonizing process of watching the light fade. He’s stopped eating and drinking, for the most part. The sippy cup with his favorite juice sits untouched on the bedside table, a painful relic of a time, just days ago, when he could still ask for it. We offer him water on a small sponge, swabbing his lips, a desperate, tiny act of comfort in a sea of helplessness. He no longer has the strength to swallow.
His periods of wakefulness are becoming fewer and farther between, slipping through our grasp like grains of sand. Just this morning, his eyes flickered open. They were hazy, unfocused, but they were open. My heart leaped into my throat. “Hi, Goose,” I whispered, my voice cracking. “Mommy’s right here. I love you so much.” I don’t know if he heard me. I don’t know if he saw me. The flicker was gone as quickly as it came, and he slipped back under. These moments are brutal gifts. They give you a catastrophic burst of hope before snatching it away again.
His breathing is irregular and shallow, each inhale a fragile thread holding him in this world. This, I think, is the true meaning of suspense. It is not the thrill of a movie; it is the gut-wrenching terror of the pause. He takes a breath… and then… nothing. One second. Two. Five. Ten. My own lungs seize. I stop breathing with him, my entire being focused on his small chest, praying, begging for it to rise just one more time. And then, a tiny, shallow gasp. The thread holds. But the pauses get longer. The gasps get shallower. We are counting his life in the spaces between breaths.
He’s beginning to get agitated. This, the nurse warned us, is a sign of discomfort and confusion as his tiny body struggles against the disease, against the inevitable. It’s not a conscious fight; it’s a primal, physical rebellion. He’s started pulling dressings off and ripping tubes from his arms, reacting instinctively to the pain and changes he cannot understand. His little hands, which should be holding crayons or his favorite truck, are instead fighting the very things meant to keep him comfortable.
We hold his hands down gently, our whispers flooding the room. “It’s okay, baby. You’re safe. Mommy and Daddy are here. You don’t have to fight anymore.” But he does. His body doesn’t know how to stop.
And the disease… it’s not content to just take him. It has to remind us of its power, its cruelty. We are noticing new tumors appearing every day, growing at an alarmingly fast pace, each one a fresh, horrifying reminder of the relentless evil that is inside him. Yesterday, I was adjusting his pajamas and my fingers brushed against a new lump on his ribcage, hard and distinct. It wasn’t there the day before. I recoiled, a sob catching in my throat. It feels like we are being mocked. It’s a victory lap for an enemy that has already won.
Since coming home one week ago—just one week, has it only been a week? It feels like an eternity—his morphine drip has been increased tenfold.
Tenfold.
He started at 0.2. He is now at 2.0. And we know, with a sickening certainty, that it may need to go even higher as the hours and days progress to keep him comfortable. This drug, this merciful fog, is our last line of defense. We are not fighting for him anymore; we are fighting to shield him. We are in a constant, delicate negotiation with his pain, and we are losing. Every time we think we have him settled, a new agitation begins, a furrow of his brow, a restless shift of his frail limbs, and our hearts break all over again. We call the nurse, our voices trembling. “He looks like he’s hurting.” And the dose goes up.
Watching this progression is a pain unlike any other. I thought seeing this disease take its toll over the past three years was difficult. I thought I knew what pain was. I thought watching him lose his hair, his appetite, his energy, was the worst thing a mother could endure. I was wrong. This—this is an entirely new level of torment.
This is the end of the marathon. For three years, we ran. We ran through ICUs, chemo wards, radiation rooms, and surgical theaters. We ran on hope, on caffeine, on sheer, blind adrenaline. We learned a new language—oncology, protocols, blood counts, margins. We became experts in a field we never wanted to study. We celebrated “good” days where he only threw up twice. We lived by the scan. We prayed to gods we weren’t sure we believed in. We held onto statistics, to outlier stories, to any sliver of light.
But the marathon is over. We’ve crossed a finish line we never wanted to see, and now we are here, in this quiet room, watching. The adrenaline is gone, replaced by a bone-deep exhaustion that feels permanent.
Saying “I hate this disease” is a total understatement. It’s a pathetic, powerless phrase. It doesn’t even touch the surface of the grief, the rage, the frustration, and the absolute, suffocating helplessness that fills every corner of our hearts. I want to scream. I want to punch the walls. I want to rewind time and go back to the day before his diagnosis, grab him, and run somewhere the sickness could never find us.
But I can’t. All I can do is sit here.
Every breath Bryson takes now is a reminder of how fiercely he is fighting, even when his small body feels fragile beyond words. The color is fading from his cheeks, that beautiful, rosy “Goose” glow we loved so much. The strength is gone from his arms and legs; he is a whisper of the boy who used to run into our arms. And yet, he still holds on, clinging to life in the only way he can. His body is failing, but his spirit is locked in a battle.
We are here beside him constantly. We trade shifts in the armchair next to his bed, though neither of us really sleeps. We are counting every moment, watching, holding, whispering words of love that I hope, I pray, somehow reach him through the fog of the medication and the haze of the transition. “We’re so proud of you.” “You are the strongest boy we know.” “It’s okay to rest.”
That last one is the hardest to say. “It’s okay to let go.” The words taste like acid in my mouth. How can I, his mother, the person who is supposed to protect him from everything, give him permission to leave me? It feels like the ultimate betrayal. But the nurse told us it’s important, that sometimes they are holding on for us. So I say it, choking back a sob. “Mommy and Daddy will be okay. We will miss you so much, but it’s okay to go. We love you forever.”
We offer him comfort in the only ways we have left. Gentle touches. Soft blankets, the ones he’s had since he was a baby. Familiar toys are placed beside him—his worn-out teddy bear, his favorite red truck—in the desperate hope that some part of him recognizes their presence. Family comes and goes, their faces masks of quiet grief, whispering their own goodbyes.
His world is shrinking as his illness advances. It has shrunk from the backyard, to the house, to his bedroom, and now to this bed. Yet our hearts expand with every ounce of love we can pour into him. We are trying to fill these last, terrible moments with a lifetime of love.
There is a profound sadness that comes with this stage of life, a grief so deep it feels like it could swallow us whole. We are in the active process of losing him. We see him slip away, little by little, with every shallow breath, with every hour he sinks deeper into unresponsiveness. And yet, we must be patient and respectful. We must allow his body to make its own choices, honoring his pace, even when it is breaking us into a million pieces.
Each pause in his breathing, each shallow inhale, is a drumbeat reminding us that the end is approaching. Yet we cling desperately to the hope that we still have moments together. What is a “moment” now? It’s not a laugh. It’s not a hug. A moment is me placing my hand on his chest and feeling it rise. A moment is his father holding his limp hand and telling him about a baseball game. A moment is the absence of agitation, a brief window of peace.
The transitions are not just physical but emotional. We have had to let go of everything. We have let go of expectations of normalcy, of meals, play, and laughter. We have let go of the future we planned, the birthdays he won’t have, the milestones he’ll never reach. That grief is a separate, chronic ache.
Instead, we focus on presence, comfort, and dignity. We are meticulous about keeping him clean, keeping his lips moist, turning him gently so his body doesn’t ache. We are his protectors in this final, sacred space. We measure time not in days or hours, but in gentle touches, soft words, and the quiet reassurance that he is loved, he is cherished, he is not alone.
There is an intensity now in caring for Bryson that we have never experienced before. Everything is amplified: the emotions, the decisions, the pain, and the love. We are learning to navigate this chaos with a grace we didn’t know we possessed, though often we stumble under its weight. We break down in the hallway, clinging to each other, before wiping our tears, taking a deep breath, and walking back into his room with a calmness we do not feel.
No guidebook can prepare a parent for watching their child slip further and further away. You read about stages of grief, but you cannot be prepared for the stages of dying. You are not just grieving; you are a witness to a slow, heartbreaking departure.
And yet, even now, even in this moment of profound vulnerability, Bryson teaches us courage. He has faced three years of illness, countless procedures, needle pokes, nausea, and constant uncertainty with a bravery that humsbles everyone around him. He has laughed. He has played. He has loved with his whole heart, even when his body was failing him. He found joy in the smallest things—a new cartoon, a ride in his wagon, a bedtime story.
And now, as he transitions, his strength is quieter, but it is no less remarkable. It is the strength to hold on. It is the strength to finally let go.
I don’t know what else to say. My heart is eternally heavy with sorrow. It feels like a physical weight in my chest that I will carry forever.
Every day, every hour, every minute feels both infinite and fleeting. The nights are the worst. The darkness seems to amplify the silence, amplify the sound of the pump, amplify the fear. I find myself counting down the moments until I can run to him—even though I am only in the next room—hold him close, and tell him how much he is loved. I put my ear to his chest, just to hear his heart, that brave, tired heart, still beating.
And when this time passes, when the silence in the house becomes permanent, I know I will forever be longing to see my healthy Goose again. I will long for the feel of his sticky hands in mine, the sound of his infectious giggle, the way he would yell “Mommy!” and run full-speed into my legs. I will long for the joy and the pure, unfiltered light he has brought into our lives for these short, precious years.
Watching him now, so fragile and weak, yet still fighting, I am reminded of the preciousness of life and the unfathomable depth of love a family can carry. Every laugh we shared, every smile he gave, every small response he ever had is now monumental. It’s a bank of memories we are frantically pulling from, a reminder that even in suffering, there was connection, there was joy, there was so much love. I want to savor these last, quiet moments, even as I fear the one that is to come.
This is a journey unlike any other—a mixture of profound, soul-crushing grief, undying love, and a desperate, fading hope. I hold Bryson’s hand, watch his chest rise and fall, and whisper words of comfort, praying that he feels our presence, our peace, our unconditional love. We are here, not just as caretakers, but as witnesses to his courage, witnesses to his small but mighty spirit.
We are facing the final chapter of his battle. And even in this stage, he teaches us resilience, patience, and the boundless, terrifying, beautiful capacity of a parent’s love.
Though the days are dark, and the hours seem endless, we will be by his side. We will offer comfort, presence, and love in every possible way. Because this is what it means to love unconditionally, to stand beside someone even as the inevitable draws near, to hold their hand as they walk to a door you cannot follow them through.
Bryson is still with us.
And for as long as he is, we will honor him, care for him, and celebrate the light he brings, even in these moments of profound darkness.
We hold onto him, even as we prepare ourselves for the heartbreak that will surely shatter our world. And when the time comes, we will remember not just the disease that took so much, but the joy, the love, and the incredible, earth-shattering courage that he gave us in return.
