The Matilija Poppy Club: Navigating the Loss of a Child With CF

After our son Sam died in 1990, I felt a kinship to everyone impacted by cystic fibrosis. I knew they could understand what we'd been through: parenting and losing a very special human being we loved so deeply.

Dec. 12, 2017 | 4 min read
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Jane Ploetz
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As a member of the Cystic Fibrosis Foundation San Diego Chapter Guild, my involvement with the cause has always been bittersweet. Although my son Sam died of cystic fibrosis in 1990 at the age of 9, I've worked hard for treatments and a cure for the rest of our children. But something has always been missing. It wasn't until we went backpacking and hiking with some dear friends this summer that I realized what.

This summer, my husband John and I climbed San Jacinto Peak with our friends, Chriss and Tim. Chriss had never been backpacking before. The heaviness of her pack and the relentless upward climb on that first day was daunting to her at first. She almost turned back and called it quits the first hour. My husband and I, experienced backpackers, knew that first day was going to be the toughest. We slowed our pace to hers. We told her what to expect, pointed out the unusual flowers along the way, kept her engaged in conversation until she acclimated to the altitude, and just generally buoyed her up to know that yes, she had the grit to do this, and yes, she would not only make it to the top of that mountain, but she'd also feel victorious, and see a view that few others have the privilege to see in their lifetimes.

In some ways, losing a child to cystic fibrosis is like that. The road is isolated, with not many people on it.

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Here’s a family photo from 27 years ago. (Sam is on my left, on my lap.)

It's difficult and long and uphill. You carry a load of grief on your back, and the road seems endless -- like it will go on forever. You can hardly catch your breath, and you think you'd better turn around and call it quits before you even start. Because the truth is, no one can carry your pack for you; you have to carry it yourself.

But you don't have to do it alone.

There are many of us who have been on this path for a long time. We just haven't had many opportunities to keep each other company, or to point out some unusual flowers along the way. So, let me take this moment to share one very special bloom.

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This flowering shrub is from the Sierra Nevada this summer -- a Matilija Poppy, a rare and fragile native. I had never seen one before at such high altitude. But here's the thing: its seeds only germinate after they've been washed by smoke from a fire. We found it bravely growing in a fire-ravaged setting among some barren rocks in the snow-capped mountains on Tioga Road into Yosemite. It blooms for less than a month ... but such a spectacular display while it lasts. And then, it's done.

That's why I am writing this. Our loved ones were on a different road, that of the Matilija Poppy -- a shorter, but equally spectacular bloom. Let us share this road together, and with others just starting out on it. We should not have to hike it alone.

I'd love to hear from you. You may reach me at janeploetz@att.net.

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.

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Jane lives with her husband, John, in Vista, Calif., where they brought up their two sons, Sam and Steve. Sam was diagnosed with cystic fibrosis at 5 weeks old in 1980, and lived abundantly for nine years. After 1992, Jane taught middle schoolers at a public visual and performing arts magnet school for many years. Today, she is a ghostwriter, helping others write their memoirs, and is now sharing her own story with you, in healing and wonder, pain, and love. In her free time, Jane enjoys camping, backpacking, gardening, reading, piano, and staying active with her family.

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