Growing Up With a Parent Who Has ALS: What I Learned

By Kelsey Lester

Growing up my chores included: cleaning my room, doing the dishes, putting the laundry away, and suctioning my dad’s throat cannula. The last chore isn’t typical of most kids, but my growing up wasn’t typical. My dad was diagnosed with Lou Gehrig’s disease in October 1993. I was born in May of 1995, and my dad is still kickin’ it, so my relationship with ALS has been longer than most. My childhood and teen years didn’t only include household chores that were different, but also different life lessons.

So, here is what I learned growing up in an ALS household…

I learned about how fragile life is.

jeffand kelsey
Jeff Lester and Kelsey Lester

Some of the first memories I have as a kid are of me laying on the grass, staring up at the sky, and trying to understand the concepts of life, death, and why we are on Earth. While this isn’t the typical worries of a kindergartner, these concepts are what I had to process through at a young age. I had to understand that life is a gift that needs to be cherished and shared with others. The idea that our time on Earth is fleeting and could change or end at any moment has been a focal point in how I choose to live my life. My sisters and I are all people who try to live each day to its fullest and achieve all that we can, which I know is a direct result of our understanding that life doesn’t always go as planned.

I learned about tenacity.

Tenacity, perseverance, and confidence are the attributes I have seen in my dad as he has battled ALS. Seeing these traits in him while growing up has shaped how I view the struggle of life, and to what extent I let life get me down. Life can throw curve balls at us at times, but doesn’t mean that we can’t stand back up after we’ve been hit. My life isn’t an easy walk, but I can stand tall knowing that nothing can happen where I can’t choose to persevere. My dad used to joke when I would have to give my life quote for school activities that it would be, “build a bridge and get over it,” which I did use for my high school graduation speech. My dad’s fight has shown me that each mountain has a valley, but that the trek back up the mountain is worth it. I know that life can be hard, but that in the grand scheme of things, our lives, even with ALS, are filled with blessings.

Kelsey_and_Jeff

I learned what loving another person means.

Being in an ALS household doesn’t end with my dad having ALS. Having a parent who has ALS, also means that I have a full-time caregiver as a parent. My mom has stood next to my dad through all the stages as his mobility decreased, and has taken care of him 24/7 for over twenty-two years. My parents are a testimony that love and marriage aren’t only about the milestones you want to experience with another person, but also about the sacrifices you are willing to make for another person. My parents have sacrificed everything for each other and our family, which shows since they are still married in a society that has a divorce epidemic. My parents aren’t perfect, but they have, through ALS, set a standard for what love is.

And most of all…

I learned to laugh.

My family is always laughing. I would say that my parents have more reason than most people to be angry at the world, and to live a life of negativity. Instead, my parents chose positivity. With each hard time that my family has gone through, we have been there to pick each other up, and enjoy our time together by making fun of each other and the world that we live in. While I would say the downside to this is my crude sense of humor, I know that the upside of being able to laugh anything off and truly enjoy the company of others. Nothing can stop the laughter of my family, not even ALS.

KelseyLestergradpic
Lisa, Jeff and Kelsey Lester

Kelsey Lester, a recent graduate of Missouri State University, served as a communications and marketing intern for our Chapter last summer, and was our Walk to Defeat ALS Facebook Live correspondent this past June. Since getting her bachelor’s degree in May, Kelsey has moved to St. Louis, traveled to Africa, and is preparing to apply to law school.

For more information on ALS, please visit www.alsa-stl.org.

2 thoughts on “Growing Up With a Parent Who Has ALS: What I Learned”

  1. What a wonderful Daughter you are! you will have no regrets one day! My step mother of 30 years also had ALS she had the fast acting kind she only lived 5 years after she was diagnosed! My dad worked for General Moter’s and had to retire before he was ready to! He retired to take care of Mom Cella made all her dyeing wish come true he moved her from Kentucky back to Missouri to be close to her children and us for her last days , My step sister & step brother helped with her care in the final days Me and my sister came to help as often as we could, me most week ends my sister lived in Louisiana and would come as often as she could But her very final wish was to have my dad & all four of us kids with her when she passed, @ home! thank God she went peaceful in her sleep with all 5 of us there by her side. Its been ruff on all of us but God sent us an Angel to take her place who now helps take care of dad. May God richly Bless you for your unconditional love of your dad! Prayers for you and your family!
    signed Betty Cossey

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