Why It Isn’t About Me

I felt badly when my son Major was diagnosed with CF, until I realized it was his fight.

| 4 min read
Jaclyn-Strube-Headshot
Jaclyn Strube
Jaci-Strube-Major-Featured-Rectangle

I've always had this saying, “Everyone has their one thing.” Something hard in their life. Divorce, the death of a parent, an illness.

From a young age, I knew that my hard thing was that my dad was a bit older than most, and he faced lots of health issues. Many people told me I was strong. They said they were sad for what I was going through. My response was the same every time. “Everyone has their one thing. Don't worry about it.”

I would actually go so far as to hold my hand up as if to say “stop” while I smiled and repeated my mantra again and again. I knew, with certainty, that my father's health was my hard thing to deal with. And that alone I could handle.

My dad and I had great times together. We loved baseball games and fishing. An athlete I am not, but I loved to wear my toy glove and watch a game with him. Losing him was awful. He was sick for a long time, but when it was over, I knew we'd made it through the worst. 

A few years after his death, my husband and I had a child, Major. When it started to become apparent that Major might have cystic fibrosis, I knew deep down in my heart that it wasn't possible. I'd already had my one hard thing in my life, so I was maxed out. Yes, I am a millennial. Can you tell? I knew in the bottom of my heart that two really big, bad things couldn't possibly happen to me.

Jaci-Strube-Major-Eating-Rectangle

Do you see where this is going? I'm blogging here on the Cystic Fibrosis Foundation website, so you guessed it, I was handed another hard thing to deal with. Except … I wasn't. 

I was so mad about Major's diagnosis. It wasn't fair! It wasn't fair to him or to me. I'd already endured such heartache in my life. How could my son have a genetic disease and such a cruel one, at that?

As the fog lifted, I began to see something. It wasn't without prayer and patience, but I could see that CF wasn't another hard thing for me to deal with. 

It was Major's hard thing.

Looking back on my life, I could finally see that although my father's illness was the biggest hard thing I'd worked through, it wasn't the only one. Other trying times had passed. And no one was keeping score as to how many tough obstacles I was dealing with. Life is hard. Good things happen, and tough things happen.

Cystic fibrosis is Major's disease. It is the first of many hard things that he will have to deal with. That doesn't mean it isn't hard for me and that I'm not part of it. But I'm not the owner, and no one is paying attention to how many things I've had to go through, nor will they tally up Major's. This is life.

Jaci-Strube-Major-Outside-Rectangle
Major playing outside.

My role is to lead him through this journey until he is ready to lead me. Even at 2, he is the leader of his care team. He can't speak in sentences, but all decisions are made based on what is best for him, not me. Like the baseball teams my dad and I used to watch, each care team member comes out of the dugout to care for him when they deem it appropriate. Soon enough, I will be looking at Major to answer his doctor's questions and he will call us onto the field.

Life won't wait until Major is done with CF before throwing him another curveball. Just like everyone else, he will learn to deal with hardships and heartache -- sometimes both simultaneously. He will also learn that there is more joy than sorrow here, and that he will have to choose how to deal with what life throws at him. 

Rather than putting his hand up to say “stop” when adversity appears, he can smile and know that his momma told him it would come, put his glove on and be ready to catch that ball.

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Parents & Guardians
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Jaclyn is a mother to her son, Major, who was born with cystic fibrosis. A graduate of the University of South Dakota, she now works in the financial services industry and also runs an online health coaching business. Jaclyn is a state advocate for the Foundation, a member of the CF Parent Advisory Council at Blank Children's Hospital, and an active fundraiser for Great Strides. She also serves as the Foundation's 2019 national advocacy co-chair. Jaclyn lives in Des Moines, Iowa, with Major, her husband, Drew, and their dogs, Eason and Lennon. Follow her blog, MAJOREASON.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.