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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Today is Rare Disease Day. It may just be another day for you, but today is a very special day for my family.

My mom was diagnosed with a rare disease in 1987. It’s called Behcet’s Disease. I was only seven years old when I was told about her diagnosis. I can still put myself back on the staircase sitting next to my nine-year old brother when given the news. I can remember those feelings of fear, uncertainty, and sadness. It was difficult to comprehend at that age because she looked fine to me. I didn’t notice anything different.

Behcet’s Disease is an autoimmune disease. It effects the blood vessels of the whole body the-american-behcet-s-disease-associationwhich then affects the central nervous system, gastrointestinal and mucus membranes. It causes incredible pain, ulcerations, severe migraines and skin lesions.

When a person with Bechet’s is in a flare up, their immune system is in overdrive. The only thing that will help calm it down is being on an immunosuppressive drug. If you know anything about medicine, you know that your body can’t stay on steroids. It has horrific side effects and is intended for short-term use only.

There is no cure but there are several different treatments that patients can try. Every person is an individual and their bodies react different to both the disease and the medicine.

Unfortunately, my mom really hasn’t had a lot of luck with treatments. She has had to change the way she lives to decrease the amount of stress (which can easily bring on a flare up). She had to stop working years ago, find support in family and friends and basically learn to tolerate pain. She is a guinea pig when it comes to trying a new medication. She has tried anything and everything that is approved from the FDA. The only thing that she refuses to take is pain medication, such as a narcotic. She will just take over the counter ibuprofen or Tylenol.

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My mom isn’t a complainer, in fact you wouldn’t even think anything was wrong with her because she doesn’t talk about it. She is one of the most selfless people I have ever met. She goes on with her life putting everyone before herself. I think that this may be a coping mechanism. When she is surrounded by her loving family, friends and furry babies she is able to forget the pain. She has a great sense of humor, adores her grandkids and loves to travel. She is a true inspiration. She doesn’t let the disease stop her from living her life. It throws a wrench in it, but she stays optimistic and just keeps moving forward. I am so proud of her and love her so much!

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May 20th is Behcet’s Disease Awareness Day.

This disease has been part of my life since I was a child. I can still place myself in that little seven-year old girl’s body, kneeling on my legs at the landing of our staircase. I was sitting close with my nine-year old brother and watching my parents try to find the words to explain the drastic change to our family. My mom finally had a diagnosis after going through many medical procedures and doctor appointments.

These words have forever changed our family.

“Mom, has Behcet’s Disease.”

As a kid, I couldn’t quite grasp what that meant. She looked fine to me, but I could tell that there was a sadness in both her and my dad’s eyes. They knew what the disease was already doing to her body and what it had the potential to do.

“There is no cure.”

This was even more difficult to hear. I remember what my next thought was, but I can’t remember if had the courage to ask it, or if they told us the answer before we thought it.

“She won’t die.”

At this point I remember crying. The relief that she won’t leave us, but that she was still sick with an incurable, invisible disease was still hard to take in.

Over the years, I still just saw my mom. I didn’t see the disease first, I saw her first. She is the most amazing, optimistic, role model that a kid could ask for. Super involved, towed us to all our activities, and spent a lot of time making things very special for us. She has the biggest heart and has always put everyone before herself.

I did see what the disease did to her though. Her flare-ups could take her down and she would feel miserable for days at a time. My brother and I quickly learned what to do to help ease her of pain; an ice pack, dark room, prednisone, midrin, cold water and a check-in from her two adoring kids. We knew that she was sick, but she never complained or told us how bad it really was.

She was always optimistic and still is today.

Having a parent with a chronic and rare autoimmune disease did change our lives. There was some really difficult things that we went through, but we have persevered and have become a very strong, resilient team.

I do think that my passion in the field of child life was stemmed from my experience. I have a deeper understanding and emotional connection with families going through similar situations.

Looking back, I wish that there was a child life specialist working with me to help me understand what was happening, to provide support to my whole family and offer interventions that could release feelings and give us the sense of empowerment and normalcy.

I suppose I will take on that role and teach kids what I have learned from both my experience and from the training and education in child life.

To learn more about Behcet’s Disease check out this video from Dr. Yazici at the Vasculitis Foundation. My mom met with him a few years ago and his treatment plan made a HUGE difference in her life!

Here is my mom with one of her four grandkids, spoiling them with ice-cream and Gramy goodies!

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