What I’ve learned growing up with a father who is terminally ill

I started kindergarten early—not just because I was ready, but because maybe, just maybe, that accelerated year was another school year my dad would get to experience with me. I celebrated many childhood birthdays within the walls of a hospital. I can break down a wheelchair and perfectly place it in the trunk of a Honda at record speed. My mom and I are on a first-name basis with many nurses, and we update his doctors by texting their personal cells. This has been my normal for my entire life.

My dad was diagnosed with juvenile diabetes (Type 1 diabetes), a bear of an illness, when he was five years old. Since then, he’s suffered every complication imaginable; his prognosis ultimately became terminal due to his heart and kidney issues. He’s endured several laser eye procedures, quadruple-bypass heart surgery, and has had both of his legs amputated. He is in a constant state of congestive heart failure, and only has one functioning kidney. The other works at 20 percent, which translates to Stage 4 kidney failure. He’s even losing the ability to use his hands.

Despite all of this (or perhaps because of it) my father is one the most incredible people I know. He is many things: stubborn, Irish, sarcastically funny, kind, generous, wise, and strong. He never complains, and continues to fight through his disease like a warrior. His example has molded me into the person I am today.

Growing up with a father with such a serious, life-threatening condition has taught me to cherish every single moment. Any day, or even hour, could be the last that I spend with him.

Growing up with a father with such a serious, life-threatening condition has taught me to cherish every single moment. Any day, or even hour, could be the last that I spend with him. My mother has always pressed that point throughout the years. I can still hear her voice, kindly explaining to me when I was 10, “This could be the last Christmas, sweetheart. We have to make the most of it.”

So that’s how I’ve lived: cherishing every special occasion, as well as every second of every day. We celebrated every single holiday possible as a family, even the ones that most people haven’t even heard of, like “Sweetest Day”(started by an employee of a candy company in Ohio). During the two-year period when my dad was confined to a wheelchair before he was fitted with prosthetics, we created games that we could all play together, even though he didn’t have a ton of mobility. And whenever we’re together, I always ask Dad tons of questions about his past, life advice…pretty much everything. I don’t want to waste precious time with him not knowing his passions, his favorite stories from childhood, or his biggest hopes and dreams. I want to know as much as possible about him before I no longer have the chance to talk to him—and hopefully this will help my kids know him long after he’s gone, too.

Despite our best efforts to keep things positive, my dad’s condition is often dire. I remember as a kid the scary times when he’d go in for a new surgery, or have to be rushed to the hospital after another complication. Instead of succumbing to my greatest fear—that my dad wasn’t going to make it this time—I kept my hope alive by finding solace in books. They took my mind away to new worlds far away from surgery and the possibility of losing my dad. Instead, I battled orcs in Middle Earth, fell down the rabbit hole to the wacky world of Wonderland, and learned spells at Hogwarts. It helped make the long hours waiting in the hospital for bad news a little less terrifying.

Selfishly, I want my dad to be with us forever, but then I look in his eyes. I see the exhaustion, the pain, the sadness.

I kept my hope alive, even when I was 11 and found three letters from my dad in my mom’s roll-top desk. Each one was addressed to me with a different occasion written on the envelope, days my dad thought he would never be able to witness: High School Graduation, College Graduation, and Wedding. Even though the odds were against him, I kept hoping that he would be able to share those special times with me. To my joy, he’s made it to witness and experience all of those things with me. I feel so, so lucky for all of it.

I know that someday, despite all of our hope and optimism, my father won’t be with us anymore. After everything—the surgeries, the recoveries, the complications—whenever the phone rings, I brace myself for the worst and think, This could be it. Selfishly, I want my dad to be with us forever, but then I look in his eyes. I see the exhaustion, the pain, the sadness. Living in a world where my dad will not be easy, but when the time comes I will also be relieved that he will be finally free from all of his pain and forever thankful for the time we shared together.

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