“Mom, my head hurts!” As a 5-year-old, I stood in the kitchen repeating those four words several times, each time louder, until I fell to the floor and had my first grand mal seizure. This is the day I became a patient and my parents became caregivers. Neither role is easy.
November is National Family Caregivers Month and today I am recognizing the three caregivers that have helped me become the strong, positive PKD patient I am today.
Due to my epilepsy, PKD and scoliosis, my parents and I have endured an unimaginable amount of stress and pain together. We share an indescribable amount of love for one another. Mom stopped working to care for me full-time and dad became the sole provider for our family. Doctor appointments, hospital stays, tests, sickness and operations were a large part of our family lifestyle. Even though my role has been a patient, I have witnessed and learned that caregivers are the unsung heroes.
My perspective of caregivers has evolved since childhood. Looking back on my youth, I see how devoted my parents were. They would do anything to make me happy and feel better, and even the tiniest things they did to provide comfort meant so much. From when mom would cut off the crust of my bread to when dad would rub my forehead. I can appreciate that even to this day, they are scared if I call them at an odd hour for fear that something is wrong. Now, as an adult with an understanding of the big picture of life, I wish I had not always expected them to physically be there for me and that they would have taken more time for themselves and each other. I have learned from this and make sure that does not happen with my daily caregiver: my husband Noah.
I feel fortunate to have my husband. Noah is extraordinary. He gives me hope and something to look forward to. His love, support and positive attitude inspire and motivate me. I am in awe by his dedication and desire to share this life with me, which can sometimes be extremely challenging. It takes a special man to marry a woman with chronic health issues and have the strength to handle them with such grace. Just like my parents did, Noah sacrifices a lot. There are many situations in our lives and things that we deal with that other young couples are not faced with. I know at times it is hard work and stressful for Noah, but our unwavering love for one another and how we face health issues with positivity and humor helps us to live a happy life together. I believe two words empower caregivers to be unsung heroes: unconditional love.
Thank you Noah, dad and mom for loving me unconditionally. Thank you to all caregivers for helping patients lead a healthier and more rewarding life.
In next week’s blog post, you will be hearing from my very own caregiver, Noah!
Who is your caregiver and what does he or she mean to you?