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.

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Watch This 8-Year-Old Boy With Cerebral Palsy Have an Epic Finish Line Moment

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As 8-year-old neared the end of the race, he heard the raucous cheers from the crowd of supporters surrounding him. Then, just yards from the finish line, he pushed his walking frame away and, despite falling and having to get back up again, finished the race unaided.

Bailey, who has cerebral palsy, completed the Castle Howard Triathlon in North Yorkshire, England, on July 26, The Yorkshire Post reported. The event included a 100-meter lake swim, 4,000-meter bike ride and 1,300-meter run — no easy feat for any child.

Bailey has always been very determined. If he wants to do something he will find a way to do it, even if it is not the conventional way,” Bailey’s mother, Julie, told The Yorkshire Post. “We have always tried to make sure that if there is something he wants to do, there is no such word as ‘can’t.’”

Although Bailey was the last one to finish the race, hundreds of fans and spectators waited around to cheer him on towards the finish line. His family was deeply touched by the support of everyone in attendance.

Watch Bailey finish the race in the video below:

 

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How My Disability Taught Me to Embrace My Own Uniqueness

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Growing up with cerebral palsy in an environment where there was no one to really identify with made it difficult to establish my own normality. So I grew up spending most of my time trying to be the normal I saw around me and fit in. This was fairly ironic seeing as how I’m anything but normal by nature!

I learned it was important to be more like others and less like me if I were to fit in. And yet no matter how hard I tried to fit in, there were always skeptics. From a small child wanting to wear roller skates to my decision to become a teacher, I have always been met with skepticism, which means I have spent a large amount of my time proving people wrong. If the skepticism was meant to deter me, it had the opposite effect entirely. Instead, it fueled my determination to succeed, if only to prove the impossible possible. Each obstacle enhanced my belief in myself and strengthened my spirituality.

I succeeded. I became a teacher, got married and had children.

However, sometimes when you think you’ve figured everything out and appear to have a handle on the situation, life throws you a curve ball. In my case, it was a stroke. After the stroke, the full extent of my disability came to the fore. Whereas before I had a slight limp and my hand was only mildly affected, I lost function in both. I also lost my ability to speak clearly and concisely.

What did I do? I did what I do best. I adapted. Those around me continued to struggle to come to terms with the situation. As far back as I can remember, it was instilled in me that I would one day have to provide for myself. The option of it being someone else’s job to look after me has always been very far removed from my reality and was never an option.

But now I choose to accept the circumstances as they are rather than dwell on what I was capable of before. I am indebted to my children who, from the onset, accepted who I was and, in turn, allowed me to do the same. The stroke has allowed me to embrace my new uniqueness. Instead of feeling ashamed of what has made me different to everyone else, I have learned to take pride in my individuality. I would never have done this in the past.

I have never lost my passion for teaching or discovering my sense of self. I now know who I am and I’m more at ease with myself. My goal of passing on knowledge and broadening horizons has always been the same, but I have had to adapt my thinking and learn to let go of the conventional and listen more to that little voice inside my head that says don’t give up when everything else around me has.

I still feel like I have something to give, and while my body may have given up, my belief that my voice can still be heard is something I hold on to. I use it to motivate myself, especially on days when I think, “What’s the point?” I like to think that this unexpected detour in my road hasn’t been in vain. I hold on to the hope that maybe in my own small way I can contribute and make a difference. Attitude is everything!

I would like to teach my children that whatever challenges they face, it’s up to them to decide how to confront those challenges, learn from them and find something positive to take from them.

I don’t believe my story is different from many others. The difference may only be that I have chosen to share mine with you. It only takes one individual to stand up, be counted and make a difference. This is what truly motivates me.

Perhaps if we all made a positive difference in our own unique way, we would feel more connected to each other and less afraid to be imperfect.

Lesley Potgieter the mighty.1-001

A version of this post originally appeared on WonderBaby.org.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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This 25-Year-Old With Down Syndrome Just Published His First Book

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Marcus Sikora has a flare for the creative.

The 25-year-old from Omaha, Nebraska, has acted in school productions and wrote and produced a one-act stage performance in cooperation with a local high school.

Sikora also has Down syndrome, but that hasn’t stopped him from achieving something that would be impressive for any 25-year-old. As of June 2015, he can add “published author” to his list of accomplishments.

author sitting in library

Sikora’s first book, “Black Day: The Monster Rock Band,” is an illustrated 40-page children’s book. It tells the story of Brad, a paperboy who dreams of becoming a rock star. When Brad discovers the band “Black Day” — comprised entirely of monsters — rehearsing in an old garage, he approaches them and asks if he can become their new bass player. The monsters’ response is swift: “No humans!” So Brad sets out to change their minds. However, he realizes the “Black Day” bandmates have much bigger concerns on their minds.

Black Day: The Monster Rock Band book cover

“[Marcus] is an incredible storyteller with an imagination to be envied,” his mom Mardra Sikora told The Mighty in an email. She and her son worked on “Black Day” together with Marcus Sikora dictating the story as his mom transcribed it.

“Sometimes I’d ask ‘What’s next?’ or ‘Why?’ and Marcus would answer, ‘Stuck,'” Mardra Sikora told The Mighty. “‘All right,’ I’d say, ‘We’ll come back to that.’ Then the next week, we’d pick it up again.”

Author and children asking for autographs

An animated short version of the book, which Marcus Sikora wrote, directed and voices for one of the characters, will be released on DVD around October 1 (trailer below). A “Black Day” music video is also in the works. In the meantime, Sikora is already contemplating the book’s sequel.

Watch the trailer for the animated short and take a look at some of the book’s illustrations below.

Black Day comic

Black Day comic

“Black Day: The Monster Rock Band” is available for purchase here, through Amazon or through Mardra Sikora’s website. You can also keep up with Marcus and Mardra Sikora via Facebook and Twitter.

All photos courtesy of Mardra Sikora.

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This New App Provides a Voice for Anyone Unable to Speak During an Emergency

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A new app is helping people who are unable to speak during an emergency to quickly and effectively get help from those around them.

Jeroen De Busser, a computer science student at the University of Antwerp in Belgium, recently developed “Emergency Chat,” an app that makes it possible for people to communicate quickly when they are unable to speak. De Busser, who has autism, told Upworthy he came up with the idea for the app after having a meltdown during which he was unable to verbally communicate to others what was happening to him.

Emergency Chat allows people to pull up a preprogrammed message on their phones in the midst of an emergency. Users can hand their phone displaying one of the screens below. Display options include “Aspie meltdown” (referring to someone on the autism spectrum), “Trach Meltdown” and “Asthma Attack” — two other emergencies during which the person affected may be unable to speak.

EC App2
Photo via the Emergency Chat Facebook page
EC App
Photo via the Emergency Chat Facebook page
EC App1
Photo via the Emergency Chat Facebook page

After hitting the “continue” button, users can send their own messages to others using a basic chat interface. The user can then explain specifically and quickly how the person or people they’re with can help.

Emergency Chat currently has more than 500 users and counting, according to The Huffington Post. In addition to helping people communicate when speaking is not an option, the app could also help well-meaning bystanders know exactly what they can do to be helpful so they don’t unintentionally cause more harm than good.

The Emergency Chat app is available for download for Android devices here. An iOS version of the app is currently in the works.

h/t HuffPost Media

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When a Stranger Approached Us After a Day of Mess-Ups and a Meltdown

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Today was a day in which I felt I’d failed 136 times. I have days like this often. You see, I have Asperger syndrome, and I have three small children, the eldest two of whom are also diagnosed on the autism spectrum.

So I messed up — royally. And then I messed up again. I felt so awful about messing up that I had a meltdown and cried. And then I messed up yet again.

By the end of the day, when I picked up Juliette (my 4-year-old daughter who has autism) from therapy, I wasn’t really in the mood to venture into a crowded public place.

But the kids were starving, and I had found two rumpled coupons for free custard crammed into my wallet. And I thought maybe, just maybe, I could redeem myself of my failures by being the “cool mom” and taking them out for a treat.

“Big mistake,” I thought, as I entered and saw a long line of people and every table full. But I couldn’t turn back now. I had to push on through.

There was a woman in an adjacent booth staring at us the entire time we were there. She watched as Baby Roland refused to sit and jumped up and down in the booth. He ate his custard with his hands instead of his spoon and dropped some onto the sticky tabletop and tried to lick it up. She also watched as Juliette got out of her seat and hid under a chair. I attempted to transition them to leave by saying, “Let’s go home and play hide and seek!”

On our way out, I stopped to refill my soda. Caffeine was much needed today! I felt a tap on my shoulder. It was the woman. I was immediately filled with dread and self-loathing shame. I braced myself for the “hands full” comment that was surely coming. “Yes,” I thought. “I do have my hands full. In fact, I can’t handle all of these kids — or any aspect of my life whatsoever — today.”

But all she did was smile fondly at Baby Roland, who was making my left arm quite tired with his almost 2-year-old big boy physique.

She said, “I’m sure you feel overwhelmed, but I just want to tell you that you’re doing an amazing job with your beautiful children. I remember those days with mine, and it can be so hard raising little ones. You are doing great. Keep up the good work, mama.”

I stood there for a second, mouth agape, and then I think I managed to stammer a thank you. With one last smile and a wink, she walked away.

Later, as I was in bed, relishing the rare but beautiful quiet in my house, I began to replay that interaction over and over in my head. I imagined what I would have said had I not been so caught off guard by her sweet words.

“Thank you. This means so much to me. I’ve been having a rough day and this was just what I needed to hear. The world needs more kind people like you in it.”

Except I hadn’t said any of that.

I sure hope the tears in my eyes showed her.

Amber Appleton the mighty.2-001

Follow this journey on One Big Aspie Family.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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