It was October 2013, and her name was Diane. There she sat in the basement of our local children’s hospital – drenched in a fluorescent glow and clutching a stale submarine sandwich. Her hair was cut into the pointiest of pixies, and her scarf had found that magical balance between perfectly styled and casually draped.
I couldn’t take my eyes off her. To me, she was a Godsend.
Diane was the first person I met at a support group for parents of children and adolescents living with cystic fibrosis. And while I must admit that it was her sassy wit – not to mention her knack for accessorizing – that first caught my attention, it was the hope she gave me that got me hooked. She was the visual representation of whom I wanted to be in exactly seventeen years. She was the totally together mother of a smart and spunky teenager who was in love, college-bound, and living with cystic fibrosis.
I had spent the minutes leading up to that first support group in the ladies’ room, crying. Could I do it? With my daughter just three months old and her diagnosis still like a fresh-cut wound, could I mix and mingle and share my story with strangers?
I could, and I did. And as the months drew on, these sessions lent me enormous support both emotionally and practically. I’ll never forget the day a handful of more experienced caregivers helped me realize that I’d taken my obsession with Lysol wipes too far. What do you mean, you don’t wield these bacteria zappers at every turn? And your children are in college? They have careers and kids? They’re not hospitalized as we speak because you failed to wipe down that vermin-encrusted chair at Applebee’s? Gulp.
Support doesn’t always have to be in-person to be powerful. Through the Cystic Fibrosis Lifestyle Foundation (CFLF), I have met several adults with CF who have served as realistic role models for my family. Though our interactions are limited to a Zoom screen and monthly phone calls, Brian, Erin, Barb, and Rod have become trusted friends who have impacted my perspective immensely. Yes, my family will experience ups and downs over the years. That’s what life with a chronic disease is all about. But it helps to have a compass pointing squarely in the direction in which one wants to go. My CFLF friends have built that compass for me.
Finally, I’ve come to value the support that other “medical mamas” can lend. My friend Katie is a local mom whose son was diagnosed with retinoblastoma as an infant and now lives with blindness. Although our kids’ diagnoses are very different, the feelings we share are similar. Worry. Guilt. A routine acknowledgment that we are messing up – and that we want to be better for our kids. Over coffee, we laugh, problem-solve, and help each other put one foot in front of the other. I don’t have to pretend to be strong with Katie. I don’t have to have it all together. I just let it all hang out – safe in the knowledge that I’m not the only one thinking and feeling the things I think and feel every day.
Nearly 20 percent of U.S. children under 18 live with a special medical, developmental, or behavioral health care need. Studies indicate that their parents report poorer emotional well-being and more restrictions on daily living than parents of “typically developing” children. If you routinely see pediatric patients with chronic or complex health conditions, odds are the parents could use some emotional support. Consider encouraging attendance at a hospital support group or providing information for a local non-profit foundation chapter.
With these support systems in place, parents can gain confidence in their caregiving skills and learn to care for themselves as they care for others. Above all, they can begin to recognize that they are not alone on their journey.
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