5 Unexpected Gifts My Daughter's Cystic Fibrosis Has Given Our Family

By: Laura Spiegel – Paint Her in Color

“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.”

“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.

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 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

huge amount of trust in the medical and scientific communities. New iterations of drugs that help address the genetic cause of disease? Yes, please. Gene editing in the future? Bring it on. So many men and women work hard every day to help my daughter live a long, full life. Thank you for giving my family hope.

4. Faith – I am raising my children with faith. My son recently told me that in heaven, all the scary movies are allowed. “Because when you go to sleep, God holds you in his giant hands so you’re not scared.” As I put both my son and my daughter to bed each night, I remind them of how thankful I am that God gave them to me. And I know that we are deeply blessed.

5. Beauty – How could this not make the list? When I see my daughter digging for worms under the watchful eye of her brother. When I feel the warm touch of her hand. When I hear her singing as she tries to out-swing her shadow. When she races after bubbles, twirls in her tutu, and cruises down the street, streamers flying. This life is beautiful to me, exactly as it is.

To all you moms out there, I hope that amidst the hard times and uncertainties, you too find moments of thankfulness, big and small. You may not always walk an easy road, but you are strong. Your kids are strong. And you are doing a good job.

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