Imagine your healthy, almost 21-year-old daughter is off living her dreams in a big city, going to college with a bright future ahead of her. It’s everything you’ve ever wished your child would have. The picture of her life you saw when you held that baby in your arms and envisioned her future is reality. Now imagine all that changing overnight. Your daughter calls you crying, inconsolable and inconceivably sick needing to move back home. Her good health is gone, her dreams are shattered and that bright future began to flicker until the flame burnt out. You panic. No parenting book prepared you for this moment. Because quite frankly, this isn’t normal; it’s not how life usually plays out. It’s like you just won the unlucky lottery you didn’t even know existed and now Struggle shows up at your doorstep with its suitcases, prepared to make itself at home.
Your nights turn into constant ER trips, midnight feeding tube flushes and wiping tears off cheeks (hers and your own). Your days turn into first thing in the morning calls to doctors and insurance companies, endless appointments and countless trips to the pharmacy. Life handed you a second job you didn’t ask for – a “second shift” per say. After a long, tiresome day at work, you come home and take on the role of caretaker for your grown daughter. Except this job doesn’t give you the opportunity to call out sick or take a personal day. You’re on call 24/7, 365 days a year.
When I became sick, my parents stepped up to plate like pros. As scary and different as it was for me, I know it must have been that much harder for them, but you’d never guess. They were brave when I couldn’t be. They had hope when there was none to be found. They saw Struggle on the doorstep and decided its suitcases weren’t baggage, just new décor in the house. They never hesitated to rush me to the ER in the middle of the night or stay by my bedside for hours at a time. Every surgery, procedure and appointment, they were there to hold my hand. My dad celebrated Father’s Day in an uncomfortable plastic chair in my hospital room and my mom spent her birthday in the waiting room during one of my surgeries. They sacrificed everything and anything to provide me with the best quality of life possible.
It was then that I learned what true, unconditional love is. It was then that I learned the meaning of the cliché phrase “I would do anything for you.” It was in the darkest times that their love shone the brightest. There’s no instruction manual on how to love someone with a chronic illness. There’s also no instruction manual on how to love and care for a child with chronic illness. But somehow, my parents managed to do it perfectly. No practice required.
Originally published on The Mighty