Being Christina’s care partner has been one of the most rewarding, challenging, and life-changing experiences of my life. It has tested me emotionally, stretched me intellectually, and reshaped who I am. Christina has C3G, a rare kidney disease.
Before caregiving, I had a thriving career in aerospace. But as Christina’s health needs grew, my once-steady trajectory began to nosedive. I became the employee who arrived late, left early, or was constantly exhausted. When Christina’s body first rejected her kidney, it was a crushing blow. Still, I refused to see her limitations as barriers. With her limited vision, she faced countless obstacles, but my instinct has always been to analyze problems and find solutions—approaching each challenge with determination and creativity.
I come by this mindset honestly. My parents raised a daughter with severe disabilities, and they never let anyone tell her what she couldn’t do. My mother was a constant presence in the hospital, while my father would mentally disassemble objects to adapt them for my sister’s independence. From them, I learned to persist, innovate, and believe in possibilities.
That’s how I’ve tried to support Christina. I made an early decision not to focus on her mortality. Everyone around her talked about dying; I chose to focus on living. I leaned into humor, laughter, and a touch of silliness. In hospitals, people always knew which room was Christina’s, it was the one filled with comedians on TV or me showing up in ridiculous outfits, even a dinosaur costume, making her laugh as we walked the halls. If her time were limited, I wanted every day to be filled with smiles.
When we found home dialysis – first peritoneal, then home hemo, and now nocturnal home hemo, we adapted our lives so Christina could keep doing what she loved. Still, kidney disease brought endless complications. Caregiving became a constant balancing act. Most people can’t imagine the choices caregivers make: Do I take time off work for this procedure, or is it one we’ll push through? There’s nothing routine about holding your wife’s hand at night, not knowing if she’ll make it through, and then showing up to work a few hours later. Caregiving is like walking a tightrope—you carry so much, but you must keep moving forward.
Christina’s open-heart surgery to replace a valve was one of the toughest moments. While she recovered in the ICU, I advocated for her needs, learning that caregivers must speak up—not just for their loved one, but for themselves too.