top of page

summer 2016

the option of off-label kalydeco

editor's notes

information from the internet

lookiing ahead

transplant talk: on gifts and grieving; lung transplant and anticipatory grief

through the looking glass

spirit medicine; what's the meaning of life?

speeding past 50; wahoo! life is good.

wellness: survivor's guilt

focus topic: a life of guilt


focus topic: the guild of having survivor's guilt

searching for the cure: medicine and big data; the future of clinical trials


film review: raising the bar on cf documentaries

meet a new director



you cannot fail

active for life - yoga and cf

parenting: anticipatory grief and survivor's guilt

clinical trial spotlight


important resources

ask the attorney

Welcome to the new “Family Matters” column, formerly called “Parenting.” This new column will contain two perspectives on parenting, family and my new favorite term “family building.” The first is from Cindy, a mother to a spirited five-year-old. The other is from me (Molly), a young woman in the process of deciding whether and how to have children. To me, family building implies so much more than just the decision to have kids. It can encompass the whether and how, but it also includes building a family with nieces and nephews, friends, and parents and siblings. No two perspectives or families are alike, and we hope to bring you our thoughts on what family means to us as we alternate columns in the coming issues. We are excited to join the staff at CF Roundtable and share our stories. This issue, Cindy will share her thoughts on Mother’s Day, a day that can be both so joyous and painful for women with CF. –Molly


These days, Mother’s Day is one of my favorite days of the year. My husband is great at gifts and surprises and my five-year-old loves to get adorably into the action. But it wasn’t always that way.

Growing up, I would tell everyone that I wanted ten kids, including a set of twins—just like the grandmother I was named for. I loved babies, little kids, older kids. I could think of nothing more wonderful than spending my life raising a large, loud, happy family.

I spent most of my childhood ignorant of the more serious ramifications of life with cystic fibrosis. It wasn’t until I was a young teen and (ironically enough) my family was spotlighted in Redbook magazine that I first read the phrase “average life expectancy”—and along with the understanding that CF wasn’t a static disease, that I wouldn’t be able to maintain my good health for my whole lifetime, came the realization that motherhood would be a struggle for me. I was likely to face fertility problems in my future, and pregnancy would put enormous stress on my body. Even if I overcame those challenges, I grew to understand, I would probably not have the physical resources to parent more than a few children at most. I was devastated. I had always been energetic and ambitious, and the list of things I wanted to do with my life was long—but “mother” had always been first and foremost on that list. More than anything else on earth—more than wanting to write, more than wanting to have a career in music, more than anything I’d ever wanted—I knew that I was meant to be a mother.

Mothering has always been the core of who I am, and learning as a teenager that there would be so many roadblocks in my path to motherhood shattered me.

I spent a long, long time in those early teenage years seeking comfort about my yearning for motherhood. I tried to make my peace with the idea that I might never be a mother, or that I might never bear children from my own body, or that if I was ultimately blessed with children I might have only one or two—nothing like the full house I had always dreamed of. I struggled with those feelings off and on for a decade—through high school, college, and early marriage. I got married young and would have loved kids right away, but for the first few years my health was unstable enough my husband and I didn’t feel comfortable trying to get pregnant. Once my health finally leveled out and we felt good to go ahead, I experienced a further year and a half of infertility—something that was not terribly surprising, as I’d always had very infrequent cycles and when my estrogen and progesterone were tested, they came back at levels so low it was almost menopausal.

We considered adoption, but the agency we were interested in had a firm rule that you couldn’t be trying to conceive while using their services, and we weren’t ready to give up on pregnancy as an option. Finally, four years after we had gotten married, I got pregnant unexpectedly right after beginning Kalydeco. (I was one of about three women who got pregnant almost immediately after Kalydeco hit the market in 2012; at the time, the only pregnant women further along than me were a month or two ahead at best, so it was pretty uncharted territory!)

This March, my daughter turned five, and Mother’s Day has been a joy since she was born. But every May, I find myself thinking constantly of the women (and men!) who aren’t feeling joyful on Mother’s Day—the ones who are in the place I used to be, feeling those same difficult, painful feelings as they see others celebrate the happiness of mothering, a happiness they may never get to experience. I think, too, of the women who are mothers, but still struggle with the holiday—seeing it as a reminder of how imperfect their mothering is, something that, in my opinion, is a particular struggle for us CF mothers, who are often unable to do so many “normal” mom things with our kids. And every Mother’s Day, I find myself wanting to sit down with these women who struggle, look them in the eye, and say:

I see you.

I see you watching the family chaos all around and aching for a child of your own.

I see the grief in your Facebook posts and comments about Mother’s Day—or how you take yourself off social media that day, go radio silent so you don’t have to witness the pain of all that joy.

I see the way your heart aches for the baby, or child, or teenager, or adult, who isn’t with you anymore.

I see the way you so often feel inadequate, like your disease makes you incapable of being the kind of mother you’d like to be. (I know I do!)

I see how hard you work to be gracious, to smile, to keep the bitterness out of your heart.

I see how you sometimes cry alone in your house when you get that baby shower invitation.

I see you because I have, so often, been you. Not all of you—there are many struggles associated with motherhood that I’ve never experienced. But the ones that I have experienced? They’ve sometimes felt like they might rip my heart in two.

Nothing about parenting with cystic fibrosis is easy, and often, celebrations of motherhood can bring that difficulty to the surface. So if you are one who’s struggling this Mother’s Day, please know that so many of us who are in different places on the journey are thinking of you, remembering vividly the pain we’ve felt in our pursuit of CF motherhood.

We see you.

Cindy is 29 and has CF. She lives just outside Portland, Oregon, with her husband and spitfire of a daughter (who never makes CF care easy!). Her debut novel, Where the Watermelons Grow, will be published on July 3, 2018, by HarperCollins Children’s Books. You may contact her at:

Molly is 30 and has CF. She lives in New York City. You may contact her at:

bottom of page