The Year of Firsts

It has been two years since I lost my dad to Huntington’s Disease. Living without him has been a profound journey, filled with many highs, lows, and everything in between. It would take an entire series to capture it all accurately.

After he died, we began referring to that time as “The Year of Firsts.” The first Father’s Day, the first volleyball season, the first family photo without him. During that year, I remember feeling utterly exhausted, sleeping more than I ever had before. Though I did my best to carry on, any free moment was spent trying to process how to keep living without him. At first, my grief centered on being his caregiver and questioning the decisions he had entrusted to me. Oddly, I felt most at ease focusing on this because once I worked through it, I began the much harder process of grieving the loss of my dad himself. It was almost as if I grieved him in reverse: first, my dad as I knew him with HD, then as I knew him before HD—as an adult, a teenager, and even a child. The hardest moments mingled with the most precious ones.

In “The Year of the Seconds,” I often felt conflicted. After Daddy’s death, I suddenly had much more time. My children needed their mother, and I began reconnecting with friends and family I had naturally drifted away from due to the demands of caregiving. I realized I was entitled to my grief, but my home didn’t need to be defined by it. For my children’s sake, we could enjoy happy moments and didn’t have to mention Daddy at every turn. I challenged myself to celebrate a joyful Christmas, rather than let it become a day of sorrow. Honestly, I felt like I was faking it—being happy felt wrong in my heart. That’s why I started therapy.

I am now two months into “The Year of the Thirds,” and this may be the most challenging year yet. I’ve experienced moments of profound joy in ways I never expected. As soon as I acknowledged this out loud to someone, I felt a wave of anxiety about my future with Huntington’s Disease and my own mortality as someone who is gene positive. It’s strange, because my dad always wanted me to be happy—he said so many times throughout his life. Even when I think about my own death, I know how badly I want my family to find joy and not miss out on life because they are trapped under the weight of grief.

Then came a painful thought: “You’re happy because you’re selfish. You’re relieved you no longer have to be your dad’s caregiver. You’re happier now that he’s gone. When you die, everyone will feel relieved, too.” It was a harsh, ugly thought. I wrestled with it for days, knowing it wasn’t true, but sensing it might be hiding something deeper I needed to address.

Today, while listening to a song about “Living in Freedom” and cleaning my closet, clarity struck. My raw, real truth is this: I will never stop loving my dad, and there will always be moments when I miss him—and that’s okay. Huntington’s Disease is not my dad. My dad was the man I was blessed to spend 32 precious years with, who happened to live his last years with Huntington’s Disease. As the disease progressed, he grew sicker, and his body became tired. Huntington’s Disease caused his death, but it never defined who he was.

I can hate Huntington’s Disease and still deeply love the person who is living with it. Just as my dad was worth loving despite HD, so am I. From my birth to his death, I would choose that time with him again. I’ll be 35 in less than a month, and if I’ve learned anything, it’s that time is precious. I am not betraying my dad by allowing my family and myself to make memories and find joy. Even if we take photos without him, or we joyfully laugh instead of crying. It is okay to experience new things and live life with a curiosity for all the new and interesting things it has to offer.

I choose to live in freedom by valuing the time I have now, honoring the past that brought me here, accepting the present as a gift, and advocating for a better future—whether I see it or not. True freedom isn’t living life without Huntington’s Disease; our paths are too closely intertwined. Real freedom is choosing to embrace my life, allowing myself to both love and be loved, and living each day with purpose.

-Jamie Holloway, BSW