Haley Elise Stevens: January 3, 1992—September 3, 2009. Those dates are from the beginning to the end: first with her birth, and the last with tears. But what mattered most of all, was the dash between those years. That dash represents all the time she spent alive on Earth. And now only those who loved her know what that little line is worth.

Haley was like any other child: fun loving, loud, joyful, caring, and beautiful. She had the craziest hair. BIG hair. Lots of hair. Hair that curled in the most beautiful/ridiculous ways! And those eyes. Big blue eyes. She was one of those kids that would walk so close to you that she would actually be walking IN your shoes (that used to make her sisters crazy and to this day, I think she did it on purpose!).

You wouldn’t say that Haley’s life was an extraordinary one. She was just like any other child. She was quiet at times, she was average in school. She loved theatre and loved to dance. She always wanted to be on stage and to be famous someday—unknowingly; her fame came in a very different way: being one of the youngest people to be diagnosed with ALS.

It wasn’t until Haley got sick that she became extraordinary. When we first noticed signs that something was wrong with Haley, she was just like any other person in High School. She was on the dance team, had quite a few friends, she loved talking on the phone and having her nails done; she was just living her teenage years. It wasn’t until she was dancing in front of the whole school that she fell during a routine and couldn’t get up. Now, you might think that she was just clumsy, and believe me, a lot of people thought that. But there was something else going on. Her hands would tremor. Her feet just wouldn’t work sometimes. She had a hard time getting in and out of cars. That is when all the tests occurred. And of course, everything would come back inconclusive. She started doing physical therapy—and that was extremely frustrating for her. We would be sitting at dinner, and she would be afraid to eat because she thought she was going to spill something. She walked with a cane at the age of 15. Then soon after, she progressed to using a walker. Through this time, Haley kept a smile on her face as best she could. She still sang and danced in the car with her sisters. When Christmas came around, she and I went to the mall to do some shopping. Knowing how tired she would be, I got her a wheelchair to use. She was embarrassed. But, we had a blast—even though, I’m a horrible wheelchair driver who got her stuck in more than one dressing room. We laughed so hard our faces hurt.

We found out that Haley had ALS shortly after her 16th birthday. And let me tell you how unfair that was. Instead of learning to drive a car, Haley learned to operate her really fancy wheelchair. You could almost see the relief in her face when she received it. Knowing that her body could rest a little bit and she wouldn’t be falling was good news to her. Morrie Schwartz described ALS in the most revealing of terms:

“ALS is like a lit candle: it melts your nerves and leaves your body a pile of wax. Often. It begins with the legs and works its way up. You lose control of your thigh muscles, so that you cannot support yourself standing. You lose control of your trunk muscles, so that you cannot sit up straight. By the end, if you are still alive, you are breathing through a tube in a hole in your throat, while your soul, perfectly awake, is imprisoned inside a limp husk, perhaps able to blink, or cluck a tongue, like something from a science fiction movie, the [wo]man frozen inside his [/her] own flesh.”

Haley’s body continued to deteriorate while she continued her education at home. After surgeries for feeding tubes and ventilators, she was able to graduate from High School in May 2009. She was even crowned Prom Queen.

It wasn’t until after Haley passed away in September 2009 that we really realized how many lives Haley had touched—she was famous. At her Celebration of Life hundreds of people came to show their respects for a girl who left this Earth way too soon. I hope that Haley realized the impact her life had, and I think she did. Because of her disease, many more people are now aware of ALS and what they can do to make sure a cure is found. They do it for Haley.

Haley’s family established Haley’s Hope when she was first diagnosed with ALS. At first, the “hope” portion was our hope that we could do something for Haley. Once she left us, I realized that the “hope” now belongs to her. I know that it was HER hope for a cure for others. And this is what we strive for today. While Haley’s dash was short, it will certainly not be forgotten. She’s most definitely in heaven singing this to us daily:

“I may not be the biggest or the brightest in the sky, mistaken for a falling star when I go flying by. But there’s one thing I’m sure of, wherever I go, I brighten the world, whenever I glow. Because I’m somebody to somebody somewhere. Someone special, I’m somebody fine. Ain’t it something that wherever I go, I brighten the world wherever I shine. So let yourself shine, shine, shine. Why not brighten somebody’s day? You don’t have to be a star, to shine your light far. You can make the world brighter, in your own little way.”

We love you, Haley.

Photos - Haley Stevens
Haley Stevens

Remembering Haley

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