My wife and I were thrilled to welcome our second child into the world. The thought of our first-born becoming a big brother had us over the moon and our family and friends couldn’t wait. Then, in the blink of an eye, things changed.
Neither of us knew we were CF gene mutation carriers. The way my wife’s doctor told her, “As you know you are a CF carrier” shook us. But we thought there was no way that I would also be a carrier and that our child would end up with CF. The conversations then turned to the scarier possibilities of CF — life expectancy, feeding tubes, tune-ups in the hospital, struggling with medications. We decided to get an amniocentesis so that we could deal with whatever life had planned for us head on. We also wanted to get this news out of the way because we wanted day one of this baby’s life to be full of joy, not fear.
Once our little guy, Benny, was here, there was a little bit of trepidation when the hospital we delivered at didn’t know about enzymes and giving applesauce to a newborn. At this moment, our reality set in. Our CF care team was UNBELIEVABLE. We got them on the phone in no time and they guided not only us, but also the hospital through the expectations.
From this day forth, our CF care team became an extension of our family. They were there for us any time we needed anything, we shared family milestones with them, and they always asked about our whole family.
We are beyond blessed to have a village around us. Our parents and babysitter came with us to the educational classes to talk about the importance of physical therapy and ways to give Creon®. Suddenly, two of the things that we were most concerned about fitting into our life with two boys under 2 became just part of our routine. We made airway clearance as fun as it could be. Early on, we called it ‘Hammer Time’ and we made up silly songs to sing while we were doing it. My older son was also a part of it and loved to help out whenever he could. It was a real bonding time for our family.
As Benny grew older, we graduated to our airway clearance vest and called it the ‘Tickle Vest' and introduced educational games on the boys’ tablets to keep them in one place. We called taking enzymes ‘Tuna Time’ because he gobbled the Creon and applesauce up like a tuna would. Orkambi® is called ‘Yogi” because we give it to him with yogurt. These may seem like small things, but it’s so much more for us because these ideas helped normalize our routine and make it feel less scary. Our little guy is thriving and that is all we could ask for.
We thought that life would be so much different than what it is for us. Many of the concerns that were often discussed with us early on have not been part of our norm. There is no difference in the life that our now three boys live outside of taking medicine before eating and daily treatments. They enjoy the same joys of life and that was something we weren’t sure could be possible. Their diets are almost identical, their routines are similar, and their personalities are their own; just how it should be.
At 4 years old, we are so thankful to say that the effects that CF has had on Benny's life has been unnoticeable to him and many others. Our routines for all his life have included Creon and PT, and most of his life also included Orkambi. We have not had to go to the hospital, and he continues to grow like a weed (a very handsome weed, I might say). We have decided to tell those that need to know about his diagnosis but have refrained from sharing it with the whole world.
The greatest compliment we can get is the immediate shocked response after someone hears that Benny has CF. We do not want CF to dictate his life, his relationships, or how people view him. He is carving his own path in this world, and we are so excited to see what that will look like going forward.
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