What a Child Wishes For When They Have a Sick Parent

What a child wishes for when they have a sick parent

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 nights that I searched for a shooting star.

I became very comfortable in a hospital setting and I loved to rummage through their 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, foreshadow to my career.

These unexpected wishes have fueled my passion in working with others. I understand how an illness impacts the whole family, as it is never an individualized disease. I know there are always setbacks with an additional diagnosis, complications, and waiting for an FDA approved treatment. I know that people living with chronic illness don’t want to have a pity party or talk about their health, 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 other’s that struggle with life’s challenges and still find the courage to push forward.

I’m now 35 and still making wishes.

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My Connection to rare Disease Day

How a Rare Disease Changed My Life

Behcet’s Disease

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4 responses to “What a Child Wishes For When They Have a Sick Parent

  1. Oh my, crying here, it could be written by either of my children.
    I am severely disabled, I cannot sit up, let alone walk, so am either bed bound or in a reclining power wheelchair. I have two children aged seven and five and I feel so much guilt that they have to go through so much worry and stress. (My health deteriorated when they were two and four). Thank you so much for sharing this.

    Every birthday candle wish, every wishing well, every prayer, even on their Christmas lists, every single wish is identical, they are still young enough to whisper their wishes and being able to lip read due to hearing impairment has given me this heartbreaking insight. You are also right, my babies have wonderful empathy, they are gentle, eager to please and desperately want to help Mummy. I bet this your mother is incredibly proud of you, just as I am of my beautiful children.

    • Thank you Dawn for your kind words. It must be incredible difficult for you to see the worry in your kids, but behind the worry is love. They just really love their Mummy and want her to feel better. You guys are passing the strength back and forth to each other.
      If it is possible for them to work with a child life specialist, play therapist or someone in a similar field that can help them have a better understanding of your health condition and ways to explore, express and feel safe expressing their emotions than they will be able to cope in a healthy way. Please feel free to email me at ChildLifeMommy@gmail.com if you have any questions.
      Sending you lots of positive vibes and support! 🙂

      • Thank you Shani for your lovely reply. I will take you up on your email offer. I have never heard of child life specialists before (we live in the North East of Scotland). I have been trying to find support for both children for years now. Our family social worker is trying to refer us to a charity called ‘young carers’ but we have not had any other support for them. My son is also Autistic which can add its own complications. I am definitely interested in finding out more about child life specialists and play therapists. I know that both of my children need support.

      • Hi Dawn,
        Yes, you have your hands full then. I understand the struggles with autism as well and how it can be overwhelming in finding the support.
        In Scotland, child life specialists are called play specialists. I would google it in your area and see what you can find. They are typically found in a hospital setting but they may be able to offer additional resources for you. Feel free to email me 🙂

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