Why My Parents Are the Real Superheroes in My Battle With Illness

When you think of superheroes you probably picture Batman or Superman or possibly some of the Marvel characters. What you picture probably involves super-strength, the ability to fly or shoot lightening out of your palms (does anyone have that power?) and all that other jazz that goes with saving the world. I can’t claim to be an expert on that type of superhero; however, I do know a whole lot about a different “brand” of superhero.

I, personally, have my own set of superheroes. When I got sick, we had no idea of the road that lay ahead of us, but my parents, as well as my little sister, have been by my side since day one and their superpowers continue to shine through. I’ve been sick for nearly four years, and over that time I have only become more dependent on them. Although I know the burden is heavy, my parents never complain about the extra role they have had to take in my life.

I know what you’re probably thinking – they’re my parents, it’s their job to take care of their child. No parent expects their child to be sick. Of course it’s always a possibility, but who really thinks it will happen to them? I didn’t get really sick until I was 17 years old, so learning how to care for an almost adult child who is now completely dependent on you again is a huge adjustment.

My parents go above and beyond what an average parent is required to do for a healthy child. Caring for me is almost a full time job, but both of my parents work full-time on top of caring for me. As I have witnessed through friends and loved ones, not everyone is lucky enough to have such loving and supportive parents. There is no rulebook or contract that binds parents to care for their children in any certain way, and to have two parents who go out of their way to care for me, even as an adult, makes me incredibly grateful.

When you become the primary caretaker for someone with a chronic illness, your life is majorly altered and there is essentially no time limit on how long your loved one is going to need to be cared for. Each person has different needs based on their illness and severity, but it is a big job both physically and emotionally. The role of caretaker is most often taken on by parents and spouses.

My mom is my primary caretaker at home. Every day she makes my tube feeds, preps my IV fluids, helps me with my medications (three times a day), heats up my heating pads a countless number of times and makes sure I have everything else I need. She also accesses my port every week, helps me wash, brush and braid my hair, does my laundry and helps me sort my medications each week. She often drives me to appointments and helps me keep track of my schedule. When I’m up for it, my mom also likes to try to take me on a little car ride or a short walk if it’s warm outside so that I can get out of the house for a little while.

My dad is also a huge part of my caretaking team. He’s here for anything I need him for. He drives me to most of my appointments and makes tons of phone calls for me. He is a huge advocate for me when I’m unable (or too shy) to do it myself. He also loves to do anything he can to help me at home. I often come home from appointments or trips to a freshly made bed and vacuumed rug. He makes my feeds when Mom isn’t home and he is always ready to run to the store to pick up my gum or ginger ale if I run out.

Being 21 and completely dependent on your parents isn’t ideal, but I’m extremely blessed to have parents who are willing to play this role in my life without complaint. I often think that being the sick one is in many ways easier than being the caregiver. Although I’ve been able to come to terms and learn how to cope with my own illness, it is often extremely difficult for loved ones to do the same.

Having to watch your child struggle on a daily basis and being unable to find any promise of improvement or recovery is an almost unimaginable pain and burden. I see my parents carry this burden and struggle with the weight of it every day. With every failed medication, each doctor’s appointment that goes by with no new answers and each month that passes with no improvement, there is more frustration, more disappointment. This, however, doesn’t slow my parents down – it only motivates them to work harder and push further. There is no end to their efforts to find answers and no limit to what they are willing to do to help my health.

My parents, along with many other full-time caregivers, are superheroes not because of any superpowers they have, but because they regularly sacrifice their own needs and desires for those of their patient. They are unconditionally devoted to that patient, and they work tirelessly to find the best care and comfort for them. My parents are not only my parents and caregivers but my biggest supporters and my best friends. I am so thankful to have them by my side.

Follow this journey on Positively Rachel.

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