Lessons Of Incurable Diseases

My only child lived with an incurable disease. Life-threatening realities reveal the human spirit’s enduring strengths or the most destructive weaknesses. For every incurable disease, there is a respite, but you have to seek it and trust it. This story is about the lessons of incurable diseases.

Every year, the New Mexico Chapter of The Muscular Dystrophy Association invited Hayes, Pete and me to be a Star on the Jerry Lewis/MDA Labor Day Telethon. Appearing on The Telethon is not easy when your son is one of Jerry’s Kids. I could only imagine how difficult it was for Hayes.

Parents, children, and adults impacted by muscle-related incurable diseases are asked to share information about their life conditions with a multitude of strangers.

Fun Fuller Family TV Debut

The three of us were waiting for our first interview on the live, local broadcast in New Mexico. In front of us was a young man about twenty years old, accompanied by his attendant. He was right in front of us in a hospital bed and breathed through a tube that had been surgically placed in his trachea (tracheotomy).

Hayes was not quite eight years old. At that time, Pete and I did not know which form of muscular dystrophy (Becker or Duchenne) Hayes had, but the most recent medical examinations showed the form to be Duchenne.

My son could not take his eyes off the young man. As soon as he was introduced and left to enter the filming area, Hayes looked up at me and said, “Mama, what happened to him? Was he in an accident?”

In the distance, I heard the young man tell the viewing audience what I feared he would say, “I have Duchenne Muscular Dystrophy.” I knew that meant that without a cure, the hospital bed, the tracheotomy, and a completely failing physical body would also be Hayes’ future in less than twelve years.

I didn’t think I could keep breathing, let alone answer my son’s question. Before I could compose myself, it was our family’s turn to be interviewed.

The First Interview

We found our positions. Hayes was seated in his manual wheelchair beside me, and Pete was behind the two of us. I heard Pete whisper to me, “Are you okay?” The interviewer asked his first question. I don’t remember what it was.

I only remember my long pause that seemed to last forever. Then, I tried my best to choke out my answers to the interviewer’s questions, but the unexpected visual of Hayes’ future was too overwhelming right before we went on.

I was a mess, but Hayes did great. His laidback style and smile got the rows of phones to ring with compassionate people who wanted to make pledges to find a cure for muscular dystrophy and the more than 150 muscular system diseases.

It was the first of many times that we spoke as a mother and son team on behalf of the mission of The Muscular Dystrophy Association to find a cure. But it wasn’t the last time Hayes bailed me out when I got emotional during an interview or speaking engagement.

I was always amazed at my son’s incredible inner strength. One year for Christmas, my sister sent Tommy from The Rugrats with a Tommy-sized wheelchair to Hayes. What a special, lasting gift that was! Hayes and Tommy were always there for each other.

Hayes At His Best

I remember one of Hayes’ Jerry Lewis/MDATelethon interviews that all my friends thought was his best. He was being interviewed with other kids who had attended MDA Camp. The question to all was, “What was the best thing about MDA Camp?”

Camper by Camper, the answers were fishing, swimming, shaving cream fights, the dance, and seeing friends again.

When it was Hayes’ turn, his eyebrows crinkled up and, with a deadpan expression, said, “Getting a break from my parents.” Nobody delivered a one-liner quite like my son-just your typical teenager. The entire live audience burst out laughing.

Spirituality Is The Respite

I think the only significant difference between religion and spirituality is that religion worships God and teaches God is outside you. Spirituality encourages oneness, and God is within you.

My simple definition of “spirituality” is how people show gratitude for their life, understand their spiritual mission, and believe their spirit energy lives on after this earthly experience.

When you believe, It is a life-changing awakening to the purpose of each day, which defines the quality of our lives. Our spiritual values, or lack of them, inevitably and largely determine the future we pass on to our children. Of course, when children become adults, their free will, choices, and values determine the direction of their lives.

Spirit, to me, is the person who looks back when you look in a mirror. However you define God or a Higher Power, ask yourself these questions:

• Do you love and respect the person looking back?
• Do you accept the person looking back as God does?
• Do you forgive the person looking back as God does?
• Do you remember God’s promise to all his children and feel valued, comforted, connected, energized, safe, and eternal?
• Most importantly, do you love your child as God has trusted you will?

If you could not answer “Yes” to all these questions, when and what will you change? Is it important to you to make any changes?

Sweetest Moments

The sweetest moments I spent with Hayes were when we prayed together at the end of each day. If I was working in my office when Pete tucked our son into his oversized recliner, he would open my office door and say, “Hayes wants to know if you will pray with him.”

Looking forward to praying together every night with my fun-loving and courageous son made it possible for me to make it through the grief and frustration of many stressful days. I felt blessed that Hayes also looked forward to our nightly spiritual renewal time.

Hayes’ room was a safe haven for an abundance of Beanie Babies that family members or friends had given him. He named each one. Before our prayers began, he would select a special friend to hold. He prayed first, and I remember his calm voice. Here is one of his prayers.

Then, I would pray. After our prayers, I said, “Love you and see you in the morning,” and Hayes would repeat the same words back to me.

Here is one of my prayers that I usually said in the morning.

Some nights, it took great effort to hold back the tears as I listened to my only child pray to God for a cure, not just for himself but for others. There were times when I cried, held onto my child, and told him, “Dad and I are so sorry that your life is so difficult. It is not the life we wanted for you.” Then Hayes, my earthly angel, would comfort me and say, “Don’t cry, Mama. It’s okay.”

Hayes’ Spiritual Values

Every night, I was touched by Hayes’ tender expression of love and gratitude for his family, friends, pets, and life. I never heard my son pray for things. His beautiful prayers, a reflection of his soul, told me who he was and what he valued deep inside. His words were hopeful and humble. Hayes gave me the strength to rest up for another day, not knowing what his tomorrow would be.

In all my prayers, I always thanked God for the angel in the next room on loan to us who was finally resting peacefully after his busy and challenging day of teaching all who met him or knew him about living in the moment and the importance of diversity, equality, and inclusion.

I think DEI is also the love everyone deserves, and all religions and spiritual communities should practice and teach those values. The word “love” appears approximately 500-550 times in The Bible, depending on the translation.

My Lessons Of Incurable Diseases

When my child was diagnosed with an incurable disease, I thought about death more and wondered what happens when we die.

In my vision of the life beyond this one, I see a peaceful existence of pain-free physical, emotional, mental, and no-worries bliss in a beauty beyond human imagination. The reward at last for the uphill, exhausting climb-to live eternally in total freedom as a joyful spirit energy living in the light and peace of the mysterious beyond.

Below are the five lessons of incurable diseases I learned, and I hope will be helpful to you.

Lesson 1: Every moment and memory with your loved one is a precious gift that cannot be taken from you.

Lesson 2 Your beliefs about what happens after death either help you and your loved one or harm both of you.

Lesson 3: Prayer or meditation is your 24/7/365 Hotline to Hope and Connection to a force greater than constant grief, fear, and hopelessness.

Lesson 4 Incurable diseases cannot kill a person’s eternal energy.

Lesson 5 Children living with incurable diseases need their parents and guardians to be their best. One of the biggest regrets I have is that Pete and I should have gone for professional counseling as soon as we knew Hayes had an incurable disease. Please consider seeking professional help if you find your family in this heartbreaking circumstance.

Resources

Make-A-Wish Foundation Of America believes a Wish Experience can be a game-changer for a child with a critical illness. It is the founding principle of the vision to grant the wish of every eligible child. For Wish Kids, just the act of making their wish come true can give them the courage to comply with their medical treatments. I know the wish they granted for my son was extremely generous and made such a difference in the quality of his life. https://wish.org

HelpGuide.org is an independent nonprofit that runs one of the world’s leading mental health websites. It’s easy to search for whatever you might need help with at https://www.helpguide.org

Near Death Experience Research Foundation is where Science and Spirituality come together. Its Mission is to research and study consciousness experiences and to spread the message of love, unity, and peace worldwide. You can check out this thought-provoking website at https://www.nderf.org

For more information from my previously published posts related to this story, check out Diagnosis And Death Certificate, Muscular Dystrophy Association, and Four Year Diagnostic Process.

Tough Cookie Tip: I got stuck trying to figure out what to write here. Keep in mind that I have not been a member of any religious organization since I was 18. A gut feeling guided me to my Hero On Wheels binder, which has many thoughts and inspirations I have documented through the years. So, I opened it up, and my hand landed on these words from Chronicles 2: Chapter 15:7: “But you be strong and do not let your hands be weak for your work will be rewarded.”

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

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