My journey with cystic fibrosis began when I was pregnant, with my doctor telling my husband and me that we each carry a gene for a disease called cystic fibrosis. We were floored. “Where did this come from?” we wondered. Nothing in our families' health histories would have alluded to this.
My husband and I had suddenly gone from being excited first-time parents to utterly distressed about the possibility of our baby having a disease we knew nothing about.
Once we learned that we were CF carriers, the next step for us was to get an amniocentesis (amnio) to find out if our newfound concerns about having a baby with CF were valid. The procedure was painful, but getting a positive CF diagnosis was even worse.
Those next few days were a blur, but I remember how we each struggled through our own grieving process. Our mourning took different paths and often resulted in small arguments. My husband battled his sorrow a bit longer than I did, and I would get frustrated that we weren't moving forward at the same pace. Blame it on those “happy pregnant hormones” or the fact that I felt my baby moving inside me every day, but I was ready to move on to acceptance sooner than he was.
While we struggled, our pain slowly turned into our mission. It started with a letter that my grandmother wrote me. She said we were "blessed to be chosen to care for this special baby.” Blessed?! This seemed like a punishment. She also said that we were strong, but I could barely believe her. At that time, we had to reach outside of ourselves to find any strength at all.
So, we connected with our church and attended a meeting at our local Cystic Fibrosis Foundation chapter, where we experienced our first rays of light, support, and hope. Then, we spoke to a pulmonologist, who is now my daughter's primary CF doctor. She gave us a more medical view of all that the disease entails and calmed our nerves by explaining away some of the scary things we were finding through our online research. It wasn't long before we were put into contact with a family whose son has CF. These parents provided a much-needed human touch and actually repeated those same words that my grandmother had said in her letter.
After an ultrasound showed that our baby had a severe bowel blockage (or Meconium Ileus), we met with a neonatal surgeon who told us that she would require surgery after she was born. At the end of this meeting, the surgeon looked at me and said, “Congratulations, by the way. You're going to have a baby!”
And then, I cried like one.
As we steadily got to the point where we were enthusiastic about our new life path, there seemed to be so much that I still needed to discover about first-time motherhood and raising this special child. But soon enough, our baby was born. After they whisked her away to the neonatal intensive care unit (NICU), my husband and I cried in my recovery room with her surgery looming in our minds. We hadn't named her yet, but there was one name that we were leaning toward. The deciding factor was discovering that the name meant “beautiful breath of life,” and we knew there could not be a more fitting title for a beautiful little girl with cystic fibrosis.
Our little Avalyn Rose was in the NICU for 62 days recovering from two Meconium Ileus surgeries, which were performed by the surgeon we had met with a month prior. She is now 18 months old and thriving.
CF is scary. It presents daily challenges and an unsure future, but I honestly wouldn't change this life for anything. It has pushed me to be a better mother than I ever thought I could be, and has given me an outlet to connect and share what I've learned with other parents of kids with CF. Our family has been blessed with a little fighter, and I am truly lucky to be her mother.