Ever feel like you’ve been shaken up and tossed out? You know that feeling when you step off a Tilt-A-Whirl ride at the fair – disoriented, a little nauseous, unsure which direction is forward? At five years old, my first roller coaster experience at the local fair was terrifying. A few years later, my sister coaxed me onto one again at Six Flags – the Screaming Eagle, I think. I remember standing in line, eyeing the “Chicken Exit”, ready to bolt. But she held me steady, certain I’d love it, and she was right.

You might think this was the start of a thrill-seeking era, but really, she just fanned the flame. As I’ve grown older (and maybe a little wiser), I’ve found myself seeking a different balance between adrenaline and calm. Our life has been on “tilt” for a long time – ups, downs, upside-downs, and now we deeply appreciate stillness, quiet, smooth tracks. We carve out space for deep breaths and opportunity to step back and see the bigger picture. And yes, we still love a good adventure.

Switching Seats

Eli to the back

The medical roller coaster continues, but the seating chart has shifted. The objective is to maximize the years he has with his current heart (and Kya’s). Timing is complicated. Transplanted hearts last an average of 15 years. At the same time, there’s no guarantee a donor heart will be available at the exact moment of need. There is specific criteria to be placed on the transplant list and you must be ready to accept a new heart should one become available. This is how UNOS prioritizes need and allocates a limited, life-saving gift.

Eli’s recent evaluation showed improvement in his heart function – truly great news! We believe it reflects improved management of sleep, meals, stress, and medication. After extensive testing and discussion with his care team, the conclusion is that he is currently “too well” to be listed. So for now, Eli is NOT actively waiting for a new heart. However, this does not erase the reality that the disease continues to impact his heart function – He will need a transplant in the future. He’ll be monitored closely for any changes. It’s a strange kind of relief, mixed with joy and uncertainty.

Kya to the front

As shared in previous updates, Kya has been navigating an open heart valve caused by the effects of ARVC, as well as Implantabe Cardioverter-Defibrillator (ICD) lead impingement. Over the next few weeks she’ll undergo additional tests and appointments to determine the best next steps, including the possibility of transplant. While we wait, our goal is to keep her stable at home. This means daily vitals (blood pressure, weight, pulse oxygen), frequent blood tests, supplemental oxygen, and regular communication with her care team to adjust diuretics and other medications. She experiences significant fatigue. We hope she can remain stable at home until her team has the data needed to recommend the best path forward.

Stay Buckled In

To say it’s exhausting doesn’t begin to cover it. We all wish we could unbuckle, jump off the ride, throw up in the nearest trash can and return to “ordinary” life. We’ve cancelled trips, rearranged work schedules, and lived in a state that often feels surreal. It’s too much to absorb at once. Like any roller coaster, we tell ourselves it’s safe, that we’ll make it to the end. What other choice do we have?

Life’s ride comes with breathtaking views from the top, stomach-dropping free falls, corkscrews, spins and loop-de-loops, sometimes even catastrophic ends. We stay buckled in. We learn to enjoy what we can, savor the views, and hold on – sometimes screaming – through terrifying parts. And we pray. One of our worries has been how we would manage if both Kya and Eli experience a medical crisis at the same time. Eli’s pause from being listed is in many ways, an answered prayer.

Speaking for the Dad

Eric plans to write something from his perspective, and I know he will when the time is right. For now, with his blessing, I’ll share this:

Eric feels the lurch of every unexpected turn and the weight of every decision. He wants to build a world where Kya and Eli don’t have to think about heart valves or transplant lists or medication schedules. When life doesn’t give them that ideal young-adult life, it feels like a personal failure, even though it isn’t one. None of this is something a dad can fix with hard work, determination, or sheer will, no matter what the world tries to tell us about doing everything “right” and it working out in our favor.

He carries the financial pressure – the quiet, relentless work of paying bills, securing insurance, making sure the future stays possible. He shoulders this so I can have an open schedule for appointments, hospital stays, and the coordination that medical life requires.

Eric also sees the parts of me that get lost in the medical maze. He knows I miss pursuing professional and personal goals, the parts of myself that used to have space to breathe. He wants me and our children to have a life with margin and possibility. It hurts that it’s not within his power to give.

There’s a steady, heavy grief in that. But there’s love in it too – fierce, loyal and steady. The kind that keeps showing up. The kind that keeps holding the bar even with the ride gets rough.

Your Presence Matters

What is true is that we’re here, together, buckled in, navigating the ride as it comes. There is fear and worry, yes, but there is also love and grit, friendship and kindness. It shows up in messages, meals, flowers, prayers and the many ways people steady us. Your presence matters more than you know.

_{The video below is from 2012 when we were participating at Lost & Found Grief Center following Kenny’s death. Lost & Found provides a full range of grief support for ages four and older at NO cost. They are located in Springfield, MO. Please visit their webpage for more information.}