Davis Collins Updates

31/10/2025

I will always wear it for my boy! 🕷️ It’s tradition! He just loved all the silly little things I would do to brighten his otherwise mundane day, including the annual spider on my head for Halloween! 🎃 I know he’s smiling just as big today as he did on this day 2 years ago with his classmates! 👻

15/07/2025

Today marks one year since Davis passed away.

I feel the need to write a small apology letter to everyone. So much happened in the weeks leading up to his passing, so much that overwhelmed us, that I want to clear up a few things for everyone who cared so deeply.

When Davis was first diagnosed with heart failure on April 23, it came as a shock. We were incredibly vigilant with his care, and it felt like a gut punch that something so serious had flown under the radar. We always knew that having a child like Davis, who couldn’t effectively communicate when something felt wrong, would be an immense challenge—especially with a heart condition.

He could have been feeling off for months and we never would have known. It wasn’t until the problem finally revealed itself on a monitor that we took immediate action. But by then, it was largely too late. It wasn’t something that could ever be fixed, only managed.

Within days, we were told Davis wasn’t eligible for a heart transplant because of his other complex conditions. And within weeks, it became clear this may not even be manageable. That he might never come home again.

When he caught RSV and began spiraling, the palliative care team stepped in. We knew what that meant. Our little boy’s light was dimming.

I remember sitting at his bedside, tearfully typing out an update to let everyone know what we were facing. And then I stopped. I realized that if I posted it, people—through no fault of their own—would start sending condolences.

I wasn’t ready for that. I owed it to Davis to never waiver, to never give up, to carry him through to the very end. I didn’t want others’ heartbreak to cloud my resolve. I wanted there to be hope until his very last breath. The straight-forward honest truth was too much to fathom.

He did come home one final time.

Those days were brutally hard. Managing TPN, a continuously infused heart med through a PICC line, constant repositioning—it was a mountain of protocols and a race against time. Davis could no longer walk without help, could barely hold himself up, and was clearly uncomfortable.

There was one moment I’ll never forget. I was getting him ready for bed and got overwhelmed—made one misstep in the routine that meant I had to start over.

In my head, I silently screamed, “This is unsustainable! How is anyone supposed to do this long term?”

And right then, Davis turned to me. Looked me square in the eyes. No words, just this calm, steady gaze. And with it, the clearest message: You won’t have to much longer.

He knew. I knew. The universe knew. His time on earth was coming to an end.

Davis never smiled again. His light faded. We returned to the hospital one last time.

After two weeks, his numbers were terrible. He looked miserable. Yet no one seemed concerned. They were preparing to send us home, knowing he likely wouldn’t make it back.

Before we ever had time to decide whether we wanted him to die at home or in the hospital, he went into cardiac arrest.

In many ways, having that decision made for us was a blessing. It was the most traumatic moment of my life. But when they asked if we wanted to intubate, we already knew—thanks to the palliative team—that it would only prolong his suffering.

We said no. We stopped the CPR.

Davis died peacefully, my hand over his final heartbeat. That last breath was his to take, free of tubes and wires that had come to define so much of his life.

⸻

A year later, I’ve learned grief isn’t linear.

Some days it’s as if July 15 never ended. Other days I feel his light fill me, and I try to move forward with the lessons he left behind.

One thing is certain: I am forever grief-stricken, learning to live with the heaviest stone wrapped around my neck. Some days it’s unbearable. Other days it’s just part of my rhythm. But I always feel it.

It’s the weight of unexpressed love—love I still carry for him, every minute of every day.

And I’ll wear that love proudly.
It’s all I have left.

19/06/2025

He never spoke a word, but Davis taught me everything I know about joy, presence, and peace. I started writing again—to remember, to reflect, and to honor him. This is my first piece on substack. If you enjoy my writing, please share & subscribe to keep me going!

This was Davis—quiet, present, full of light.

28/02/2025

Took a special drive over Davis’s favorite bridge right at sunset in honor of his birthday.

We love you sweet boy! Keep shining that light!

27/02/2025

Happy Heavenly Birthday to our Davis. Today he would have turned 17. His greatest legacy was appreciating the simple things in life and finding beauty & joy in ordinary places. To honor him today, let’s all take a moment, look around and find that simple beauty. Take a pic and post it here in the comments or send it to me! We’d love to see Davis’s memory making a positive impact throughout the day! 😊

15/01/2025

6 Months

January is such a cold month. The idea of putting extra layers on, putting kids on the bus, or shoveling your way out of your driveway would make anyone shiver. That was my little secret advantage, I never had to do any of that. On those ultra cold mornings, I could let Davis sleep a little longer, wake him up by snuggling into his bed with him, and pull a cozy blanket over both of us. He would rest his head on my shoulder, look out at the dreary cold day, and not be bothered by it in the least. It was a double-edged sword of course, with his medical conditions prohibiting us from participating in physical society, but the bubble we lived in was nice and cozy.

Waking up Davis was no easy task. It was an endless set of caregiving routines that required layers of physical and mental concentration. Despite all that, I knew just how lucky I was to be in that place at that exact time. I knew we might not get to do this forever. I made a choice to adapt my mindset, that the grueling work to take care of him was a privilege, not a burden. I granted myself grace when I would get overwhelmed, tried to turn negatives into positives, and found every microscopic silver lining to simply remember that one day, I may not have this privilege any longer.

After the snuggle time was over, I would start our rigorous routines, but on those extra cold
mornings, I would put his pants and shirt in the dryer for a few minutes to warm. Davis did not
communicate well, but it was one of those little things that made him show emotion, a sweet smile that warmed even the coldest January day.

To him, it was purely his mother’s love. To me, it was a memory that someday would keep me warm somehow when everything suddenly went cold. I knew what I had. I knew I could lose it at any given moment. Despite all my efforts to
cherish every tiny thing to eventually ease the pain of losing him, I would still trade the world to
wake him up one more time and snuggle.

As I take a freezing cold walk around sunset six months later, I think of those sweet little memories. Just as I suspected and prepared for, the memories are all I have left.

20/10/2024

The Eternal Wave

That’s the name of my special pendant. Encased inside are some of Davis’s ashes. Jared’s pendant is etched with Davis’s fingerprint along with his ashes. It is a beautiful way for us to symbolically bring Davis with us wherever we go. We brought them to Dauphin Island last weekend, 3 months since his passing.

Most people only see a glimpse of the shore when it is calm and peaceful, but it can be a terrifying place at times. Like the ocean, Davis battled storm after raging storm, his body left permanently scarred by each terrifying blow. The sun would always rise again with the promise of gentler waves and calmer skies, but that promise came with the sobering reality that each storm took its toll.

We stood at the shore with him and faced the most unimaginable circumstances. We covered him, protected him, and braced for the worst in a place no one else would dare to bravely stand tall. When we survived each storm together, the sun would rise and set again, but with a deeper
appreciation for the moments of calmness, and an understanding of the increasing fragility of life.

As Davis’s heart began to fail, we knew that the sun was setting. Sunset can be beautiful, alive with colors and spectacular light, but inevitably fading away to darkness. We soaked in his light as long as we were allowed to exist in it, until the sun descended for the final time. The storm finally consumed him. Without the warmth he provided, it suddenly became cold and devoid of light. Standing on the same shore where he once stood, I wrapped myself in the same blanket I used for years to at his hospital bedside and kept myself warm with his light that he left behind. His energy is still felt throughout our home, and we both felt his energy strongly on this night while on the beach as we watched the sunset. Despite it feeling like the sun would never rise again, it did, inevitably and assuredly, now with Davis’s spirit a part of it all. The waves continue to ebb and flow, some days calmer than others, but just as before, we gained a stronger appreciation for the legacy he left behind.

The void of his absence will never be filled, but he will live on because of the immense love we carry for him. That love is never-ending, like the waves that will always kiss the shore, an eternal wave.

15/08/2024

How can it be that we’ve existed on this earth for a month now without him? It’s incomprehensible. The most devastating reality we’ve ever faced is a world without Davis in it. We’ve faced some harsh realities before, many in fact, but the sliver of hope in each was that we still had him. That all ended on July 15th. We always lived with the knowledge that his life was more fragile than most, and he could be taken from us at any given moment. It’s why we chose to live in gratitude, mindfulness, and positivity. We nearly lost Davis countless times throughout his 16 years, so that was always an image we could never avoid. That did not make losing him any easier.

Yet, there is still a sliver of hope. Davis was the most joyful individual you could ever imagine.
Despite his medical conditions causing him constant pain and suffering, he found a way to wake up with a smile on his face. As I opened his curtains each morning, the sunlight filled his room, and his smile filled in simultaneously. He lived like a breath of fresh air, a promising day over the horizon, and the warmth of the sun on your shoulders. He was the embodiment of the phrase, “Happiness is not having what you want, but appreciating what you have.” We lived that way with him, and for him.

I eulogized him myself at the funeral because there was no one better to speak for him than me. I’ve been speaking for him his whole life and I am not about to stop now, despite now being a grieving mother. I wanted everyone to know that Davis was a joy seeker. He had extreme limitations, yet he found joy within the confines of his life. He began each day with the intention of being happy and whatever that was, he found it. Can you imagine living this way? Waking up with joyful intentions? Your biggest goal of the day is happiness? Davis had every single reason to be miserable and unhappy… no one on earth would blame him for it, but he chose not to be. He chose happiness. Light over darkness. On rainy mornings, he became the sun. When he reached for his iPad, it was only to watch things that made him happy. No anger, no anxiety, no outrage. Just pure happiness in everything he did. Couldn’t travel the world, so he watched others do it on YouTube. Couldn’t ride a roller coaster, so he begged for fast-fast on the golf cart. Couldn’t swim or surf but stood at the edge of the sea and dreamed. He did not verbalize how happy he was, he lived it for all to see. Words were never necessary. It was
impossible not to see his joyful soul exuding from his body.

At the end of every day, we took a walk as a family. Davis always led the way to the backyard where the setting sun provided the backdrop. We cherished our walks, knowing we would never see that sunset again, for tomorrow’s will be different, as will each sunset after that. It became the day’s deepest breath, filled with gratitude for simply existing together, and knowing we could never live that moment again. A month later, we still take those sunset walks, and I assure you, he’s there. Our eyes are drawn to the stunning colors in the sky, just as our eyes were drawn into the beautiful colors of his soul. He’s there. I still open the curtains in his room every morning and as soon as the sunlight filters in, he’s there. A light as bright as his could never dim. That light tilted humanity’s axis toward the good, and more of that is needed in this world.

He sought out joy in the worst of circumstances, so we will do the same. We will follow his example and his legacy by seeking out the light through the darkness of losing him. Stopping to watch the sunset, watching the birds, opening our eyes and choosing to find joy rather than sorrow will carry us the same way it carried him.