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What a Child Wishes for When They Have a Sick Parent

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When I was a little girl, I looked up at the sky every night to search for the brightest star. When I found it, I closed my eyes tight and made the same wish in my head, “Find a cure for my mom.”

I vividly remember repeating it as fast as I could when there was a shooting star, as I believed they had more power in granting wishes.

I never wished for a Barbie doll, a pet or a trip to Disneyland. I just wanted Behcet’s Disease to leave my mom’s body and our family.

This rare, incurable, autoimmune illness had incredible power over us, and I wanted to destroy it with my wishful thinking.

As you can guess, it never came true.

However, other unexpected wishes did.

Resiliency, Empathy and Hope.

These aren’t your typical wishes, but they serve a purpose in my life. They guided me through my childhood into adulthood, viewing things with a different perspective.

I remember how angry I would get when I heard peers making fun of someone due to their appearance or struggle with a task. I could feel the pain from the insults, and I would speak up. They needed to be aware of an invisible disease.

I wanted people to feel included and accepted as they are.

Often times, I played a care-taking role, retrieving ice packs, medication and a thermometer for my mom. The flare-ups were harsh and restricted her to a dark bedroom while waiting in agony for the pain to diminish.

Those were the nights I searched for a shooting star.

I became comfortable in a hospital setting, and I loved to rummage through storage cabinets and take whatever I was allowed to — ID bracelets, basins, gauze, tape and of course a gown. I would bring it home and play doctor, foreshadowing my career.

These unexpected wishes have fueled my passion in working with others. I understand how an illness impacts the whole family, as it’s never an individualized disease. I know there can be setbacks with an additional diagnosis, complications and waiting for an FDA-approved treatment. I know people living with chronic illness don’t want to have a pity party; they just want to live a normal life, even though their normal is a bit different. I have a genuine admiration for my mom and others who face life’s challenges and still find the courage to push forward.

To any person who’s parent is sick, remember that you aren’t alone, and it’s OK to share your feelings, even if you think they may upset your parent. Ask questions, talk openly to your family and remember you did not cause their illness. Together you will get through this.

I’m now 35 and still making wishes.

shani

This post originally appeared on child life mommy.

Originally published: July 28, 2015
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