5 Gifts Cystic Fibrosis Has Given Me
5 gifts cystic fibrosis has given me. Hmm. Can a parent raising a child with this condition (or any other) write those words and mean them? Guest blogger Laura Spiegel says yes, and in her post she traces the path that led her to be grateful for those 5 gifts.
“When can I stop doing my treatments?” my daughter asks suddenly. I am 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 picks up a book. Her birthday is in three months. She will be seven.
“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. “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 is often 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 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 the top 5 gifts cystic fibrosis has given me:
- Perspective – I used to sweat the small stuff and strove for perfection in everything. 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. Perspective 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.
- Purpose – I believe a well-lived life hinges on where you spend your time and who you spend it with. Four years ago, I leaped 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. I have partnered with children’s hospitals to create meaningful experiences for families. I have blogged and connected with dozens of parents who are walking in similar shoes. We laugh, we cry, and we search for some semblance of control. Above all, we celebrate the strength within us. In this work, I have found my purpose.
- Hope – If I could have one wish, it would be for a cure to cystic fibrosis. Until that happens, I will put huge 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.
- Faith – I am a Christian and am raising my children with faith. When I put my daughter to bed each night, I remind her that angels dance beside her bed. We even sing about it. “And while they dance, my Jesus will watch over me and keep me healthy, happy, safe, and strong. Warm and cozy all night long. Healthy, happy, safe and strong, my Jesus keeps me.” Her eyes close, and I know that she is deeply blessed.
- Beauty – 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 outswing her shadow. When she races after bubbles, twirls in her tutu, and cruises down the street, streamers flying. She is beautiful to me, and God couldn’t have made her any better, cystic fibrosis and all.
These are the 5 gifts cystic fibrosis has given me. To all the parents out there, I hope that amidst the hard times and uncertainties, you can find moments of thankfulness for the gifts your child’s condition has given you.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
Laura Spiegel spent 12 years at the world’s largest biotech company, partnering with professionals and care teams to help people with special needs and disabilities lead full and happy lives. In 2013 her daughter was diagnosed with cystic fibrosis. Laura now hosts Paint Her in Color, a website that offers emotional support to parents of children with special medical, developmental, or behavioral health care needs. When she isn’t reading, writing, or soaking up time with her husband and kids, Laura can be reached at Paint Her in Color, by email at email@example.com, and on Facebook and Twitter.
Is it easier or worse to be an EA/TEF parent in the time of COVID? Nanette Lerner answers that question for EA/TEF Awareness Month 2021.
The practice of noting ten minutes in a caregiving life can keep parents in the here and now instead of dwelling on what isn’t going well.
Why faith is the best way for parents raising kids with special needs and disability to beat back the dread of the unknown that plagues us.