‘He should be institutionalized!’ People wanted to know why we didn’t put him in a home to free up our time.’: Nephew of late uncle with Down syndrome shares his journey, ‘I always knew Kelly’s life mattered’

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“I want to share with you someone who was a very important part of my life. He was my uncle Kelly (Kelly Owen Burk). Kelly was born with Down syndrome. He was one of the happiest and funniest guys I’ve ever had the pleasure of meeting. For 14 years, my parents and I took care of my Uncle Kelly.

Courtesy of Jordan Burk

A little background, Kelly was born in 1952. My grandparents received a lot of criticism from family and peers saying things like, ‘He should be institutionalized!’ Something which was very common in that day and age. They chose to raise Kelly alongside his older and younger siblings; this decision caused him to flourish and develop quickly.

For over 50 years, Kelly lived in a very small west Texas town, and I wanted him to enjoy all a larger city had to offer. So, my friends and I had fun taking him to places to eat, the movies, the mall, the zoo, the duck pond and so much more. During these outings he became quite the connoisseur of cheeseburgers! Kelly was non-verbal and needed help with basic daily activities such as choosing his clothes, getting ready for the day, brushing his teeth, and preparing his meals, but he could feed himself. I knew he was finished when he shared his food with his Dalmatian, Travers.

Kelly spent most of his day drinking coffee and cheering on game shows. He quickly felt at home and would go outside and watch the squirrels and ride his stationary bike. Kelly was very easy to take care of and very appreciative of everything that was done for him. In the beginning, scheduling a sitter to come to our home to watch Kelly for an evening or short period of time could be difficult. I wanted someone who felt comfortable around Kelly. Luckily, my family and friends were always willing to help.

Courtesy of Jordan Burk

Sometimes people wanted to know why we didn’t just put him in a home to free up our time. I didn’t always handle these type of suggestions well, sadly. He was FAMILY! It makes me think of the movie Lilo and Stich, ‘Ohana means family. Family means nobody gets left behind or forgotten.’ We’d have some people at restaurants even request to sit elsewhere if they noticed Kelly. Which I actually pity, because if that’s how they lived their life I’m sure they missed out on meeting some fantastic people.

Kelly was always smiling. Even when you could tell someone was put off by his appearance, Kelly would kill ’em with his love or his signature smile. He was a hit no matter where he went. One year, we had over 75 people gather on our block to celebrate his birthday with burgers and face painting.

In the last year of his life he had many challenges because he began having seizures. He was unable to walk and required a wheelchair, was unable to feed himself, could not use the restroom by himself, couldn’t dress himself and basically became dependent for all of his daily needs. But in the midst of all the changes, Kelly never lost his joy or ability to smile. Patience was the greatest lesson I learned. Kelly was very slow moving and unaware of time. If I tried to hurry him, he shut down and refused to acknowledge any request or me. His behavior was shaking his head ‘No,’ while putting his finger on his nose showing he was unhappy. In spite of negative behavior, I always knew Kelly’s life mattered and he needed to be loved, valued and treated with respect.

Courtesy of Jordan Burk

My advice for new caretakers would be to make sure to take care of yourself by eating and getting enough sleep. Also, develop a strong support system of friends and family who can help you. Learn to laugh and enjoy the treasured moments, and the not so treasured moments. My family stayed for 10 days with Kelly while my parents and I went to Disneyland. It was the break we needed to continue to take care of Kelly when he when he was requiring 24/7 care in his last year. Sadly, Kelly passed away in December of 2016. He won’t be forgotten.

Courtesy of Jordan Burk

I was inspired to write the ‘Kelly stories’ after seeing how people responded to him and his childlike behavior. Kelly carried a stuffed animal which made others curious given he was in his 60’s. My family and I were always very open and willing to explain Down syndrome. Kelly meant so much to me that I wanted the typical child to experience the joy of someone with Down syndrome or other disabilities. My life has been impacted because of Kelly’s unconditional love. Kelly needed me, but I also needed him in my life. His ability to love, show kindness, never judging, finding joy in the little things like a good ol’ cheeseburger.

The Kelly series is going to be a collection of fully illustrated books aimed at children to teach them about Down syndrome and how to be kind to one another. Every book has a Q&A in the back of the book with questions most kids would ask about Down syndrome. We have found the Q&A to be such a valuable tool. Also, there is a free song download with every book. The second book will be released in the spring of 2020. My goal for the Kelly Project is not only books but to carry this message into schools, private events, hospitals and resource fairs. Included in vision is a desire to build a community of Kelly and Kelso (his stuffed animal) supporters to encourage one another. I have already witnessed when people came together to help one another, it is powerful.

Courtesy of Jordan Burk

It is important to me to keep Kelly’s legacy alive because he was such a huge part of my life. It still to this day amazes me my uncle, a man who grew up in a town 400, born with a disability, could impact so many people worldwide through his message of kindness, love and acceptance. The lesson in the first book is about teamwork and including those who are different. It encourages children to be bold in their kindness. In the second book there are many issues children face like bullying, loss, sadness and hopelessness. In this book Kelly chose to find happiness in difficult situations; therefore, he was an example for the reader.

Courtesy of Jordan Burk

You can support the Kelly and Kelso stories by purchasing books and products. Also, share on your social media! Share your favorite adventures with your Kelso stuffed animal, stories and pictures. All donations go to buy books, arts and crafts supplies, which will be given to children in hospitals and schools.

Every life matters. Everyone deserves to be seen. Everyone deserves respect. Everyone deserves kindness, to be valued and to be loved.”

Courtesy of Jordan Burk

This story was submitted to Love What Matters by Jordan Burk. You can follow his journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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