‘She won’t have a normal life.’ I realized things needed to change. We shouldn’t be ashamed of our disabilities.’: Woman details journey with Cerebral Palsy, ‘Love yourself always’

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“It was an ordinary mid–December night. My mom was 6 months pregnant at the time and was set to have me in February. She and my dad were excited because I was their first child but little did they know I’d be arriving that night. My mom felt harsh pains and her water broke. She yelled to my dad, ‘The baby is coming!’ My dad, confused at first, said, ‘Wait, the baby is due in February!’ They rushed my mom to the hospital where I was born within a few minutes—3 pounds and quiet.

At first, they thought, ‘Why is she not crying?’ They thought I was stillborn. My parents, with tears in their eyes, thought they had lost their firstborn child, but the doctors were determined. I needed oxygen right away and blood to survive. Since I was so small, I was not born with enough blood, so the doctors told my parents I needed blood transfusions.

Courtesy of Sidorela Lleshi

The doctors took me to the ICU with breathing tubes and gave me oxygen as they transfused blood in hopes of keeping me alive. I was put in the ICU for infants for a couple of weeks until I was able to go home. Everything was fine until I turned 1 year old. My mom saw I couldn’t walk like most kids or use my arms. I was still crawling and couldn’t stand or sit up like most children my age.

She decided to take me to the doctor where they discovered I had Cerebral Palsy (CP). It’s a brain injury or congenital disorder that affects motor functions within your arms and legs. These are daunting medical terms, but in all honestly, living with it is not as the definition makes it seem. It is a beautiful aspect of my life, but at the time, based on the online definition and what doctors told my parents, they tried to scare them off, telling us, ‘She won’t survive or have a normal life.’

Courtesy of Sidorela Lleshi

My mom was frightened at first when she heard these words. She did not know if I would have a future or what would become of me. Since I was her firstborn, she had to learn to take care of me, but as I grow older, I realize I had a very normal childhood. I went out with friends, I went to public school, and lived my life like everyone else. Even though I went to public school, I was placed in special education with smaller class sizes where teachers set yearly goals for students and provide them with accommodations so students can do well in school. Between you and me, that system sometimes holds students back, makes them feel different from everyone else, and doesn’t push them to their greatest potential. Even though I was comfortable in those classes because everyone was like me, I felt comfortable in my own skin, and I had lots of friends, my English teacher, Mrs. Korotki, told me to take the SAT and apply to college so I could get a degree like everyone else.

Courtesy of Sidorela Lleshi

Throughout my school years, I had multiple surgeries to loosen my hamstrings because another thing that comes with Cerebral Palsy is your body is stiff and comes with lots of spams, which sometimes can be very painful. I got into Pace University but had to leave shortly after. Now, I am attending Queens College and in May 2021, I am getting my BA in English.

As I’m set to get my degree in English, I’m realizing things must change around us. We are not the problem—we should not be ashamed we were born with a disability or became disabled due to an accident. We should take what we have and create change so people like me can see themselves too and not be afraid to follow their dreams. I’ve started writing articles on how to make things accessible, such as playgrounds, and I was even contacted by The Mighty and they published my article on Yahoo. I also won Miss Amazing New York 2020, which is a pageant that provides women and girls with disabilities the opportunity to walk the runway and feel empowered. There, I met many beautiful ladies who also have disabilities and built a strong sisterhood with them. In my opinion, that pageant should have more media attention because it shows true beauty through many unique stories. I was also a part of Open Style Lab, which is a program that works with individuals to come up with solutions on how to make clothes more accessible. Their designs were featured in a documentary ‘Design for All,’ which premiered on Hulu over the summer.

Courtesy of Sidorela Lleshi

I use my platform and my Instagram as a way to advocate for people with disabilities in hopes we will someday be included everywhere and more people will see themselves in the fashion and media industries. I want to show people like me that you can do anything you set your mind to and there is nothing wrong with you. We just have to be that voice and educate more people so we too can be included and see ourselves in all aspects of life. Through my social media, I show the things I do like travel and things I take part in to come up with solutions so we can live a life like everyone else.

I am also working on a book of short stories that represent people living with disabilities, in hopes to get it published one day. This will help people read and learn about disabilities at a very young age, so children can say, ‘Oh that girl or guy looks like me. I am not so different after all.’ This will also help new parents not be so scared because they know their child will someday have a future, no matter what disability they have even if they have a physical disability or learning disability.

Courtesy of Sidorela Lleshi

Stay tuned! I have more projects coming hopefully soon and just remember—love yourself always and never give up, even if people put you down. Get back up and be the change people need and want to see. Trust me, there will be people around you, such as family and friends, who will be very supportive of you along your journey. For now, I can say I am happy with my disability because it has become like my best friend. It will always be a part of me. Since I am an English major, I also love to write. Here is a short poem I wrote about my disability:

‘Do I dare speak what’s on my mind? Or sit alone within this vine….

People, tend to ask me about my disability, sometimes to say ‘I am so sorry.’

Why be sorry? They do not understand I am not worried.

Don’t get me wrong, it can be hard at times

However, it is worth the sublime.’

With this poem, I will leave you as we view the world with kindness, hope, and beauty. Just remember, you can do anything you set your mind to.”

Courtesy of Sidorela Lleshi

This story was submitted to Love What Matters by Sidorela Lleshi from New York.  You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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