When telling the story of my caregiving journey, listeners regularly react in some mix of amazement and pity at my need to juggle the responsibilities of being caregiver to my wife, Kim, and raising my young daughter, Reagan. I often just smile and tell them that I wouldn’t wish it on my worst enemy.
Caregiving can be a dreadful and isolating experience. I certainly throw my fair share of pity parties for myself, and at times it is overwhelmingly difficult to empathize with the world around me. But being a father has been the greatest joy of my life, and Reagan has pulled me out of my own dark thoughts more often than I probably realize.
In July 2012, when Reagan was just eight months old, Kim was diagnosed with metastatic breast cancer. Kim and I had just begun discussing the timing for our second child—a discussion that turns out to be one of a handful of vivid memories that make up the final months of our old life. After Kim’s diagnosis, our long-term vision of kids, college, and retirement turned into a short-term plan for surviving in three-month cycles between PET scans. Reagan went from being the eldest – the soon-to-be “built-in babysitter” – to an “only” who has known no other world but one of infusion appointments, mommy being too fatigued at times to get off the couch, and daddy periodically being too overwhelmed to plan dinner.
As a father, I feel grief every day. It grieves me that Reagan won’t get a little brother or sister. It hurts every time Reagan is held back from experiencing life to its fullest because of cancer’s impact on us. I mourn the inevitability that one day Reagan will lose her mom to cancer, and the broken man that I will be, a man who will have to hold together his daughter’s foundation so that she can thrive despite the trauma of her loss.
However, despite the grief, I also count my blessings every day that I’ve got an awesome sidekick to hold my hand and tell me a seemingly endless supply of knock-knock jokes. When I am throwing a pity party, it is often Reagan’s thirst for life, and the game of Tag, that keeps me present. When Kim is having a particularly down day, it is more often Reagan who comes up with the idea to bring her breakfast in bed, buy her doughnuts, or just cuddle on the couch and watch a movie. The reality is that Reagan is a caregiver too – at times a better one than I am.
Reagan and I are a family caregiving team. We unashamedly raid the nurses’ snack drawer during infusion appointments to find Kim peanut butter crackers. We pick the dandelions in our yard to make bouquets for Kim when she is too tired to get off the couch. We use Christmas-themed cookie cutters to make pancakes for dinner because we do what we’ve got to do to make mommy smile.
I know that at times the path ahead will be dark and difficult, but I also know that I am not facing it alone. Reagan and I are on this caregiving journey together, and I believe that when the journey ends, love will have carried us a long way.
Dustin Cesarek is a cofounder of Jack’s Caregivers Coalition, a community for men who are cancer caregivers.