{"id":339,"date":"2026-03-01T19:01:38","date_gmt":"2026-03-01T19:01:38","guid":{"rendered":"https:\/\/cota.org\/cotaforteamham\/?p=339"},"modified":"2026-03-01T19:01:39","modified_gmt":"2026-03-01T19:01:39","slug":"tilt-a-whirl","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforteamham\/2026\/03\/01\/tilt-a-whirl\/","title":{"rendered":"Tilt-A-Whirl"},"content":{"rendered":"\n
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Ever feel like you\u2019ve 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 \u2013 the Screaming Eagle, I think. I remember standing in line, eyeing the \u201cChicken Exit\u201d, ready to bolt. But she held me steady, certain I\u2019d love it, and she was right.<\/p>\n\n\n\n

You might think this was the start of a thrill-seeking era, but really, she just fanned the flame. As I\u2019ve grown older (and maybe a little wiser), I\u2019ve found myself seeking a different balance between adrenaline and calm. Our life has been on \u201ctilt\u201d for a long time \u2013 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.<\/p>\n\n\n\n

Switching Seats<\/h2>\n\n\n\n

Eli to the back<\/em><\/strong><\/p>\n\n\n\n

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\u2019s 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. <\/p>\n\n\n\n

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Snow day: A fav pic from when they were littles<\/figcaption><\/figure>\n\n\n\n

Eli\u2019s recent evaluation showed improvement in his heart function \u2013 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 \u201ctoo well\u201d 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\u2019ll be monitored closely for any changes. It\u2019s a strange kind of relief, mixed with joy and uncertainty.<\/p>\n\n\n\n

Kya to the front<\/em><\/strong><\/p>\n\n\n\n

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\u2019ll 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.<\/p>\n\n\n\n

Stay Buckled In<\/h2>\n\n\n\n
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Feb 2026: Angelia’s 50th bday<\/figcaption><\/figure>\n\n\n\n

To say it\u2019s exhausting doesn\u2019t begin to cover it. We all wish we could unbuckle, jump off the ride, throw up in the nearest trash can and return to \u201cordinary\u201d life. We\u2019ve cancelled trips, rearranged work schedules, and lived in a state that often feels surreal. It\u2019s too much to absorb at once. Like any roller coaster, we tell ourselves it\u2019s safe, that we\u2019ll make it to the end. What other choice do we have?<\/p>\n\n\n\n

Life\u2019s 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 \u2013 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\u2019s pause from being listed is in many ways, an answered prayer.<\/p>\n\n\n\n

Speaking for the Dad<\/h2>\n\n\n\n
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Eric plans to write something from his perspective, and I know he will when the time is right. For now, with his blessing, I\u2019ll share this:<\/p>\n\n\n\n

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\u2019t have to think about heart valves or transplant lists or medication schedules. When life doesn\u2019t give them that ideal young-adult life, it feels like a personal failure, even though it isn\u2019t 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 \u201cright\u201d and it working out in our favor.<\/p>\n\n\n\n

He carries the financial pressure \u2013 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.<\/p>\n\n\n\n

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\u2019s not within his power to give.<\/p>\n\n\n\n

There\u2019s a steady, heavy grief in that. But there\u2019s love in it too \u2013 fierce, loyal and steady. The kind that keeps showing up. The kind that keeps holding the bar even with the ride gets rough.<\/p>\n\n\n\n

Your Presence Matters<\/h2>\n\n\n\n

What is true is that we\u2019re 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.<\/p>\n\n\n\n

The video below is from 2012 when we were participating at Lost & Found Grief Center<\/a> 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.<\/sub><\/p>\n\n\n\n

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