The 5 Gifts Cystic Fibrosis Has Given Me
By Laura Spiegel
This past Sunday was Mother’s Day. Mine began like so many other days with a step out to our porch to check on a nearby robin’s nest. As I sat watching three fluffy baby birdies eagerly await their mama’s breakfast delivery, I thought to myself, “This is the life.” The smell of blueberry pancakes wafted out, and aside from the sporadic shouts from my six-year-old and three-year-old about who got to wield the whisk, all was calm.
I have found myself more reflective as of recently. Maybe it’s the “Passion Planner” that I got as a gift to myself. Have you heard of this? Seriously, you must look it up. Or maybe it’s that the Indiana winter has finally thawed and given way to a beautiful green spring. Whatever the case, I have found myself spending more time in my porch chair, listening to the birds, and thinking of all the reasons I have to be thankful. This Mother’s Day was no different.
As a mom of a three-year-old with cystic fibrosis, my family’s days are hectic. There are breathing treatments to do, enzymes to pack, and vest therapy to cajole. Gone are the days where I could plop my daughter in front of a thirty-minute TV show and watch the vest time tick peacefully by. She has discovered the “pause” button, and it seems that every vest session is now a sequence of pausing (by her), under the breath muttering (by me), and intense negotiation. We then un-pause, play a round of Hungry, Hungry Hippos, and repeat. Two to three times a day. Every day. Most def.
But that aside, I have actually found myself thinking about the good things that life with cystic fibrosis has brought. Before I go any further, let me say this. I would in a heartbeat give my life for my daughter to be free from this disease. The day that a Kalydeco-like drug is approved for her will be one filled with champagne, a million hugs all around, and the brightest fireworks we can find. I never want to imply that I’m happy that she has CF. I’m not. But since it’s a fact of life for now, I guess I’d like to see not just its bad side, but its good.
Here are some of the under-the-radar gifts that CF has brought to my family.
1. Perspective – My husband and I both used to sweat the small stuff. We strove for perfection in everything. And funny thing about that ---- the more you get it, the more you seek it. You’re rarely satisfied, as there is always one more goal to meet, one more tweak to make, one more whatever. We still do worry, but these days, those worries are focused on the bigger things like “How can we best keep our daughter healthy?” Having something big to worry about in a way makes the smaller stuff a bit less worthy. There’s only so much room in one’s head for this kind of stuff…
2. Purpose – I’ve always wanted to spend my time doing something I’m passionate about. This past year, I’ve been fortunate to become more involved in the CF community, both as a Board Member for the CFLF and a member of the Patient and Family Advisory Council at our local hospital. The former gives me an outlet for my writing, and the latter allows me to help our children’s hospital create meaningful experiences for families. When I talk about the work I’m getting to do, I sometimes have to tell myself to tone down my enthusiasm lest it seem fake. Because I really, really do dig this stuff!
3. Hope – If my family could have one wish granted, it would be for a cure to CF. We wouldn’t think twice about it for an instant. And until that happens, we are going to continue to put a huge amount of trust and cheerleading into the medical and scientific community. New iterations of drugs that help address the genetic cause? Yes, please. Gene editing someday in the future? Bring it on. There are so many men and women out there who are working hard every day to help our daughter and everyone with CF live longer, fuller lives. Thank you for giving us hope.
4. Faith – I am a Christian and am raising my children with faith. Some days are easier than others, and there are days where I don’t feel as sure. But when I put my daughter to bed each night and tell her that angels dance by her bed while she sleeps, I truly believe it. I can almost feel them there, and I know that she is deeply blessed.
5. Beauty – How could this not make the list? When I see my daughter’s smile, hear her laughing with her brother, or feel the touch of her hand. When I hear her singing her little preschool songs and feel her butterfly and Eskimo kisses. When she is 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. CF and all…
To all you moms out there, happy belated Mother’s Day. I hope that amidst the hard times, you too are finding some things, big and small, to feel thankful for. Cheers to you all, and until we all get to celebrate with fireworks, God bless.