The ALS Association

ALS Ice Bucket Challenge Progress

Teen Author Reflects on Coping with her Father’s ALS Diagnosis and Finding her Inner Strength

Sarah Caldwell learned about her father’s ALS diagnosis after finding his prescription for riluzole. At just 15-years-old, Caldwell who is now a freshman at Yale remembers feeling a combination of both betrayal and overwhelming fear as her parents initially struggled to come to terms with the devastating news.

A trip to Paris was hurriedly scheduled for just Sarah and her father. Although Caldwell still felt obligated to hide her knowledge of her father’s diagnosis, she recalls feeling fortunate to have made the discovery, as it allowed her to more fully appreciate the valuable time she was spending with her father.

Back at home, as the reality of her father’s rapidly progressing disease took hold, Sarah found herself sinking into a deep depression. An honor student, Caldwell was able to maintain her 4.0 grade average while hiding her family’s pain from her friends believing their reaction would only cause her more hurt.

Caldwell recalls eating less as ALS began to erode her father’s own ability to eat. Instead of spending evenings at the dinner table with her family, Caldwell began retreating to the basement where she found herself spending more and more time alone.

At home she said, “I was irritated and cried all the time.”

A visit to a psychologist helped put Caldwell back on a healthier path. A short course of antidepressants helped Caldwell cope in addition to spending afternoons with a trusted teacher talking through her feelings and experiences that her friends, even if she had tried, likely didn’t have the life experience to relate or provide meaningful advice.

As Caldwell slowly gained footing with her new normal, her family continued to focus on spending quality time together collecting memories through trips and other special moments. During a trip to the Cayman Islands, Caldwell witnessed a significant shift in her father’s health. For the first time, her father required a wheelchair to navigate the winding airport corridors.

Sarah recalled, “After this trip, however, it didn’t matter to me anymore that things were no longer ‘normal’ and that my dad needed some extra help. I was willing to do anything to put a smile on his face. And the smile on my face was no longer made of plaster. It was real. I was a new person with a new outlook on life. Not only was I happier, I was more armed to cope with my dad’s progressing illness and maintain a relatively positive perspective on life. It sounds like an oxymoron, but I was happier because I finally recognized how sad I was that my dad was sick.”

Every child responds to the anticipatory grief associated with a parent’s ALS diagnosis differently. Caldwell’s experience is very much one of hope. With the right support systems in place, children and teens can weather even the most trying times.

“It seems like the end of the world in a lot of ways: having a parent that’s sick; to have depression; but you can come out on top,” assured Caldwell. “And honestly, I’m happier now than I was even three or four years ago because I’ve learned to appreciate the small things; to realize that my grade on a test is not the worst thing that can happen on any given day and just to appreciate the time you have with the people in your life that are important to you.”

To learn more about Caldwell’s ALS journey, you can find her book on Amazon by visiting:

Caldwell’s Tips for Parents

Maintain Normalcy: For me, I think one of the biggest things you can do is try to maintain some of the normalcy that is in your day-to-day life. If a parent has as certain way of doing things, particularly the sick parent, I think unless it’s a negative thing that it’s important to not make any drastic changes.

Keep an Open Dialogue: I think it’s good to talk about what’s going on, and I think it’s good to spend that extra Sunday night together. Make it a night that you sit down and play a family card game or do something fun together.

Spend Quality Time with Each of Your Children Apart from Other Family Members: It’s important to build that one-on-one relationship with each of your kids so they will always have a special memory, particularly early in the diagnosis.

Don’t Fixate on Your Bucket List: I know it’s great to have a bucket list and everything, but it comes to a point where you just want to spend time with the people you love and doing things becomes less important than spending time with them. Consider whether physical limitations may make a trip too taxing or potentially a safety risk.

Help Your Child Establish Support Systems: I think it’s important for there to be a person to talk to, particularly if it’s a child, and it’s helpful for it be a professional and they can form a connection with that person. Even a trusted family member or friend can be helpful.

Leave a Lasting Legacy: I think a good idea is to write notes for your kids to mark milestones in their life such as their 18th birthday, graduation from high school, first day of college, college graduation, the day you get married, first job, first apartment and other important occasions.

Powered by Blackbaud
nonprofit software