Parenting with Cystic Fibrosis – by Megan Mancuso
Deciding to Get Pregnant
The choice to have children is filled with uncertainty. What if my baby is born with higher needs than usual? What if I lose my income? How can I promise to provide for this child until adulthood when the future is so uncertain? Cystic fibrosis adds to that uncertainty. What if I am too sick to care for my kids? What if I die before they are grown? What if they resent having a sick mom?
There were many good reasons for me and my husband to choose not to have kids, and yet we chose to become pregnant and we did it twice. For me, not taking the chance to raise a family—something I have always wanted—felt like the biggest risk of all.
This doesn’t mean a didn’t ever question that choice. I questioned it when we needed fertility treatments—was the fact I didn’t get pregnant on my own a sign that I shouldn’t get pregnant? I then questioned my choice again when I was six weeks pregnant (after three rounds of IUI) with the worst flu I had ever had on top of the usual morning sickness. I felt like the baby was trying to kill me and felt rotten physically and mentally.
Around 20 weeks into my pregnancy I was no longer sick, I had a growing baby inside me and I felt healthy. I found out my baby was a girl and I was excited. The first half and second half of my first pregnancy were night and day different. I unexpectedly loved the second half of my pregnancy. And there was a question I thought more and more: What if it all turns out okay?
And my pregnancy did turn out okay. My beautiful daughter was born. Her birth went smoothly and I was as healthy as I was before I got pregnant.
Finally, I had a baby. It had felt like waiting for stars to align for My husband and me to be financially in a place to seek fertility treatments and also for my health to be in a good place. Bringing my daughter home from the hospital was one of the happiest days of my life. She was healthy, I was healthy, and my home felt a lot more full: a crib, baby swing, toys, and blankets, and of course, the baby. She filled our home. And our time. And took all our energy.
I would be rocking my baby over-the-moon that she was part of our family, that it was now my turn to have a sweet little baby to hold. But then she’d get hungry. I tried and I tried to breastfeed her, but she never got a good latch. Every time she tried to eat ended in tears of frustration for both of us. After days of this, I decided to give up. I pumped and bottle-fed her. I knew I had messed it up, that somehow I could have done better, but I also knew I no longer wanted the frustration for her and me and I started to learn that parenthood is full of doing the best I can and still falling short of the ideal.
I remember those first months I was always sitting on the couch. I was either doing treatments or pumping or feeding the baby. But it didn’t last forever. Another thing I’ve learned is that no phase lasts forever, which helps when struggling with the night waking or the potty training or whatever the current struggle is.
During a rough part of my first pregnancy, I had promised myself I would not get pregnant again. But as my daughter got bigger, my husband and I knew we wanted our little girl to have a sibling. I did four more rounds of IUI and got pregnant a second time. This time wasn’t as rough. I didn’t even get morning sickness. But the second half was more uncomfortable and the way I was carrying the baby affected my breathing more. But in the end we had a beautiful healthy boy.
Of all the big uncertainties and struggles in parenthood, it is often the small, daily struggles that wear me down. Being a parent has a way of showing me daily my imperfections. I lose patience with my kids. I yell and lecture and punish when I know I should explain, listen, and love. Some days the mom I want to be and the mom that I am are two very different people.
On top of the daily struggles of parenting, keeping on top of treatments is a constant challenge. I let my kids play in their playroom while I do my treatments. One day after finishing treatments downstairs, I climbed up the stairs to where my kids were playing. In the stairway I knew there was trouble when I smelled a strong scent of lavender. I opened the door, and there was my daughter dumping the lavender body wash into a goopy pile of soaps and lotions on the carpet. She blurted out, “He did it!” Which was also true as my son had his own goopy, soapy mess in the corner. It is hard to clean soap out of carpet, I had to use a wet vac and still the carpet will never be quite the same. My response to this mess was not one of my finest moments.
Another time during treatments my kids came to me and said, “Come see the playroom, Mama!” My stomach sank. I climbed the stairs wondering what new way they found to make a mess but
instead opened the door to a completely clean playroom. I had told them earlier we could get the Legos back out if they cleaned up everything else, but I didn’t expect them to do it without me. I never know what I’m going to get, yet I still do treatments and still let them play while I do them. I’m glad they are a little older now and don’t make such spectacular messes, but these two events remind me that parenting is simultaneously better and worse than I imagined it to be.
What if it all works out?
Of all the uncertainties and questions, I have had and continue to have there is one that seemed more like a hope, a dream, too good to be true: What if I have many healthy years left? Thanks to Trikafta, this hope is now seeming like a reality. As a kid with a progressive disease that had a life expectancy in the 30s, I wouldn’t have believed that at 37 I’d be healthier than ever. I am thankful for the medical advances that have happened in my lifetime that have made my family possible.
I am thankful for my parents that taught me to live the life I wanted despite uncertainty. I am especially grateful for my husband, who could’ve chosen a life without CF, but instead chose to be with me and chose to take the risk of parenthood with me. Last of all, I am thankful for my daughter and son. They are wonderful kids and I am glad they are in this world.