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By: Laura Spiegel – Paint Her in Color
UNEXPECTED GIFTS MY DAUGHTER’S CYSTIC FIBROSIS HAS GIVEN OUR FAMILY
“When can I stop doing my treatments?” my daughter asks suddenly. I am consumed with hooking up her nebulizer and am caught off guard by her question. “When there’s a cure for cystic fibrosis.” I pause. “And I think that’s going to come one of these days.” “Maybe it will be on my birthday,” she says as she picks up a book. Her birthday is in three months. She will be 7. “That would be something, wouldn’t it? You’re my brave, strong girl, and I love you with all my heart.”
And yet. There is a beauty to our days. An overwhelming sense of what matters and what doesn’t. What’s worth it and what’s not. In addition to its grief, a life with cystic fibrosis has brought my family an unexpected ability to nurture the blessings alongside the battles. Here are five unexpected gifts that this experience has given me. 1. Perspective – I used to sweat the small stuff. I strove for perfection in everything. Not surprisingly, the more I had, the more I wanted. These days, my priority is the health and liveliness of my family. We don’t have to be perfect; we just have to be here. Focusing on the bigger picture has helped me relegate the small stuff to the “junk drawer” of my mind. Every now and again, I’ll open it up and play around. But most days, there’s only so much room in my head for this kind of stuff. As both my daughter and her older brother grow, I want to teach them the same. It’s not about the grade. It’s not about the trophy. It’s about enjoying the experience and each other. 2. Purpose – For me, a well-lived life hinges on where I spend my
“You’re my mommy,” she replies evenly. “And you smell.”
As a full-belly laugh builds from deep within, it hits me. This exchange represents my daughter to a “T.” Her inquisitiveness. Her humor. Her hope in spite of it all. A life with cystic fibrosis can be filled with uncertainty, frustration, and fear. As a mother, I’ve experienced more lows in the last seven years than in the thirty years prior. I worry. I fret. My heart aches to think of the disappointment, the loss my daughter may one day feel. I would in a heartbeat give my life for her to be free from the cruelty of this disease.
22 Special Needs Living • January 2021
time and with whom I spend it. Nearly five years ago, I lept off the corporate ladder after realizing that I wasn’t where I was meant to be. Since then, I have soaked up time with both of my kids and have connected with hundreds of parents of other children living with special medical, developmental, or behavioral needs. Together, we laugh, we cry, and we search for some semblance of control. Above all, we celebrate the strength within us all. In this community, I have found my purpose. And one day, I hope to help my kids find theirs. 3. Hope – If I could have one wish, it would be for a cure for
cystic fibrosis. But until that happens, I will continue to put a
