A Tear And A Smile

My son lived with a physical disability and an incurable disease. He taught me how to celebrate life with a tear and a smile on our journey.

In my teens, I dreamed about making a living as a poet. During a visit to the library, I stumbled across (or perhaps divinely led to) a book of poetry written by Kahlil Gibran, poet, prophet, and painter. His homeland was Lebanon.

After I flipped through the introductory pages, the first chapter appeared. Below is just part of the writing that I have never forgotten. Some words are just that powerful.

Kahlil Gibran Poet And Prophet

“I would not exchange the sorrows of my heart for the joys of the multitude. And I would not have the tears that sadness makes to flow from my every part turn into laughter. I would that my life remain a tear and a smile.

A tear to purify my heart and give me understanding of life’s secrets and hidden things. A tear to unite me with those of broken heart; a smile to be a sign of my joy in existence.”–Kahlil Gibran

When I was young, these words made no sense. How could sorrow have any value equal to happiness? Once Hayes entered my life, I completely understood the poet’s wisdom and intention.

The Mischievous Maverick

Hayes revealed himself, as children do, in daily bits and pieces that later in life become known as personality. According to The Secret Language of Birthdays, May 12 (my son’s birthday) is The Day of the Mischievous Maverick. Three statements in this book grabbed me and perfectly described Hayes’ core: “Those born on May 12 have a naughty allure. Their mischievousness may not be extreme enough to get them into trouble with the authorities, but they are known for their teasing and the lighthearted pranks which they play with a twinkle in their eye. Those born on this day are often found in leadership roles. Those born on this day have the kind of self-assurance that encourages a strong bond of admiration to form with their peers; they may therefore be asked to be a spokesperson for a group.”

I would describe my son as fun-loving, spiritual, sociable, affectionate, caring, nice dresser, patriotic, dedicated spokesperson for people with disabilities, positive attitude, accepting, creative, tolerant of adults sometimes behaving badly, obedient, non-judgmental, forgiving, courageous, sports enthusiast, observant, responsible, private and quiet at times, loyal friend, and loving son.

Here is how Hayes described himself in a school newspaper:

“History on myself! Hello, my name is Hayes Fuller, and FYI I’m 14 years old. I’m in a green electric wheelchair. I was born in Presbyterian Hospital on May 12. I’m a normal boy that’s just in a wheelchair but knowing some people think that I am different. My friends think of me as a normal individual. They don’t think I’m weird just because I’m in a wheelchair (I mean, people in wheelchairs should not be treated differently).

Hobbies In my spare time, I like to collect coins, which I sort, and just have fun with them. I like to play video games (which I beat all my friends at)! Also in my spare time, I go to the mall and look at all the video games, magazines, necklaces, and all sorts of things. But my favorite hobby is hanging out with my friends whenever I get the chance to have them come over or get invited to their houses.

School I like to come to school and to do all my homework and try to make a good grade point average. My favorite subject in school is Math, for one I like the story problems. I like school because I see all my friends. I like all the teachers they are so nice. The teachers treat me like anyone else in the class. Even though I am in a wheelchair, I am in a Regular Education curriculum (which I think is cool).

I am a Boy Scout! I am a Boy Scout in Troop 183 at Asbury Methodist Church near Candelaria and Eubank. I always try to recruit new members. I am a Life Scout, which is one rank below Eagle Scout (I am so close)! I am just missing a couple of merit badges. It is so exciting that I am almost an Eagle Boy Scout, and will be an Eagle Scout in a couple of months.

Sports When I was just 7 years old I played Challenger Little League in the Mile High League. I had such a fun time because I stole second base every game and I played second base. When I played right field, once someone on the other team hit a pop fly. It almost went over the fence, but I caught it and was so happy. I have over 7 trophies.

My Electric Wheelchair My Quickie S-626 Toxic Green Electric Wheelchair is one of the best wheelchairs on the market. Well for some reason my chair has been acting up. Over the summer I am going to get both motors replaced and I think I’m going to get a new joystick. My wheelchair can recline really far back (which is really cool). But, the best thing about it is that it is mine. I really love this because it gives me my legs back.

Me a spokesperson! I am a spokesperson for the Muscular Dystrophy Association (MDA). Maybe you have seen me on a commercial, but my favorite thing that I like to volunteer for is the Jerry Lewis MDA Telethon. I encourage people to make a donation to help people like me. And I suffer from a condition called Duchenne Muscular Dystrophy. I finally got in my wheelchair when I was 8 years old. I was so sad that I had to be in a wheelchair.

The Wheelchair Lift In our van my family has purchased a wheelchair lift. The wheelchair lift can hold up to 600 pounds. I think that is amazing that a wheelchair lift can hold all that weight. But the lift is so useful for people in wheelchairs because they can move around instead of staying at their house. I like to go on the wheelchair lift because it feels like I’m in an elevator. This piece of equipment is so cool.

The Ramp into my House One day in the summer, my dad and I made a ramp into my house. It took about a week to build. My dad and I worked on it 7 hours a day for the entire week. I had to help him cut, drill, and paint the ramp. When we finally got it finished, I took my first trip up it. I was scared but it held up my wheelchair. I was so proud that I had made that ramp, and we still have it today.

Website Maker I made a couple of websites in my time. I have made a website for myself. It is about Dragon Ball Z. I have made one for my aunt. She is an artist. Her site is about her artwork for her own business. She is one of my favorite aunts. One Mother’s Day she invited my family and me to come over for dinner. We had lasagna. It was so good!

And this is my newspaper about myself.”–Hayes Fuller

Finding this newspaper article that Hayes wrote about himself, and what was important to him, is the smile part.

You are remembered, Hayes. Until we meet again, love you always–Mom

An excellent resource for the most current information and research progress about Duchenne Muscular Dystrophy is Parent Project Muscular Dystrophy. It has a 4 Star Exceptional Rating with Charity Navigator. https://www.parentprojectmd.org

Tough Cookie Tip: Make it your joyful priority to spend as much time as you can with your children. Really listen to what they tell you, and what they want to be when they grow up. Children have much to teach us.

Copyright © 2022-2025 Marilyn K Fuller. All Rights Reserved.

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