The yearning for more kids was almost torturous, as the joys brought with them equal, if not worse troubles. How does one continue to grow their family after already knowing their first child has a terminal illness, and every child conceived naturally has a 25% chance of inheriting that disease? It was one of the hardest decisions of my life.
Having my sweet Kennedy four years ago was the absolute best thing that ever happened to me, regardless of the pain and trauma that came with her cystic fibrosis diagnosis. I have always known in my heart that I wanted more than one child, but now my challenges of fulfilling that desire were riddled with obstacles many don’t often face.
That longing never quite left my heart and as the years passed, and Kennedy grew older, my heart knew it was time for her to have a sibling. I wanted Kennedy to have someone by her side, someone to call family, since family was the biggest blessing for me growing up. However, the fears of judgement crept in, the fears of having more children with cystic fibrosis was unbearable and the troubles of wanting more kids now knowing what we were up against was beyond painful.
After having some in-depth conversations with my husband, we decided we were going to continue to grow our family. However, our troubles didn’t just involve cystic fibrosis. My almost unbelievable diagnosis with lupus in 2019 and polycystic ovary syndrome in 2020 made natural pregnancy almost impossible for me. It wasn’t until 2021 that we decided it was time to speak to a fertility specialist and begin our journey into in-vitro fertilization (IVF). My husband and I went to countless doctors’ appointments that ultimately led us to getting a whole workup to begin our newest journey into IVF.
Our plan was ready, and I was beyond excited. I felt like it was all a dream — that I could get pregnant with help and that we could avoid having another child with cystic fibrosis. A huge weight was lifted. We were supposed to begin within the next couple of weeks … until we got a call that our insurance refused to pay for the rest of the process. I was left heartbroken, completely shattered, and incredibly defeated.
Pregnancy announcements started to become painful for me to hear as I sat sidelined, dealing with infertility and the crushing fact that cystic fibrosis was a possibility if we ever conceived naturally (even though I thought I was okay with that decision). What came was an avalanche of feelings — an accumulation of possibilities, from giving life to a sick child and potentially facing betrayals of close friends and family gossip, to the more statistically probable event of having a child unburdened by cystic fibrosis. How would we deal with the possible heartbreak of an older daughter whose family could sympathize, but never truly empathize with the daily struggles she faces?
It was all so crippling for me — the pain so intense at times I found myself distant from a lot of people. Months went by and grief periodically visited, until one morning we received a phone call that revealed the choice of natural or in-vitro pregnancy was no longer in my control. A routine blood test taken a week prior showed I was having another baby, and the doctor was all too thrilled to surprise me. I was ecstatically pregnant, but now facing all my fears and concerns much sooner than I expected.
I was in complete shock; I couldn’t believe this was my reality. I remember feeling this huge sense of gratitude, a sense of calm in a very rocky storm. However, with these feelings also came a huge sense of worry, an enormous amount of pressure to try and explain our circumstances to those around me. I instantly felt judged before even telling a soul. It was hard for me to process these two emotions: excitement — where I wanted to shout from the rooftops that I was pregnant, and then judgement — where I felt so incredibly ridiculed by our own personal choices of growing a family, even though this wasn’t planned.
These feelings held me back from telling a lot of people. At first, I wanted to hide my pregnancy from the world to spare my heart feeling any type of way other than pure happiness, but this underlying joy and excitement I was feeling wanted to tell the world.
I figured the best way for me to unravel these conflicting emotions was to turn to my amazing cystic fibrosis community for some guidance and support.
I remember reaching out to a few of my fellow CF mom friends. Their words of wisdom, support, and excitement were exactly what I needed to move forward. Each mom shared different struggles or concerns about how they handled each situation. This was all so very comforting for me and extremely eye opening. It wasn’t until after talking to these amazing mothers that I truly began to realize this is our life, our decisions, our family, and despite judgments (which will always be there regardless of CF) no one can take this moment from me, from us.
I was pregnant and I was happy! I deserved, just like everyone else around me, to celebrate these amazing milestones — these amazing moments in my life. I deserved to shout it from the rooftops that I was in fact pregnant with our second child! We, just like everyone else, were allowed to celebrate with our family and friends this beautiful moment. And once we did, our hearts were full, and we were able to enjoy this time.
Despite some comments here and there, I have learned that no one will ever truly understand our position unless they have walked a mile in our shoes and so I try and not let it get to me. I simply move on and continue my joy of welcoming our newest addition.
Regardless of cystic fibrosis, our child will be loved beyond measure. Kennedy has already been filling the role of big sister and is extremely excited to welcome her into this world. We can’t wait to watch them grow together and share a bond as siblings. Cystic fibrosis is a terrible disease, which causes enormous heartache and turmoil. But, within this struggle emerges a community of fighters, in which we find and share all our blessings and miracles. No matter the choices and circumstances given to us, we will meet what comes — fighting.
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