"Nick and Elaine, I know you guys are just settling in with Maddox, but I have news that I have to share with you. Maddox has cystic fibrosis." This phone call from our pediatrician on a Friday afternoon would change the rest of our lives.
Nick and I were married for over five years when we decided to start a family. Maddox was born on a Sunday night on one of the hottest days in August that year. Nick and I enjoyed pizza in the recovery room and our lives as a new family started. We brought Maddox home a few days later and started settling into our new routine.
That particular Friday afternoon was an exciting one for me: We were doing Maddox's newborn pictures at our house. He was a bit cranky, but who wouldn't be given the circumstances (AKA, trying to figure how to stretch out while adjusting to new lights and loud noises). Then, Nick's phone rang with a call from our pediatrician's office.
I knew it was serious when he asked me to join him in a separate room. He told me that our doctor said that Maddox tested positive for CF and asked us not to Google it as we would only hear the bad stories. Our doctor had also arranged for us to meet with the CF team in Green Bay first thing Monday so we could hear from them what this entails.
I was immediately in a state of shock and denial. No way that this could be our little guy; I didn't even know what cystic fibrosis was. In fact, I couldn't even say it right and had to keep looking at the words. I told Nick that this couldn't be correct and that I wasn't dealing with the news at this point. I wanted to go and enjoy our newborn pictures. I was determined not to let this ruin my evening and that the tests were wrong.
Well, if anyone knows my husband, he researches everything -- cars, tools, diets, work boots … you name it. Needless to say, he did not heed our pediatrician's advice and began to research the disease.
I told him that I only wanted to hear the good things, and the only thing he really said to me was that the average life expectancy had risen drastically over the past 30 years and that research is ongoing. Wow. Although I really didn't know how to respond to that, I said, “So, you're saying that this isn't good.” “It's going to be a challenge for sure,” he replied.
We got through that first weekend as brand-new parents, trying to understand diaper changing, bottles, pumping, healing, sleeping, trying to keep a clean house, and the occasional guests. I would say sleeping was the hardest part -- not just with a newborn, but with the unknown and anxiety of 'what if.' It was both the best and worst weekend of our lives, and we had no idea what to expect for our appointment or our future.
Then, we were at the hospital -- my heart pounding in my chest waiting for the receptionist to call us back. Soon, we were introduced to our CF doctor and nurse, who gave us a basic overview of the disease and told us a little about themselves. From there, I don't remember anything they said as I was zoned out thinking, “This is really happening. There is something wrong with my perfect little boy. Is there anything I could've done differently during the pregnancy? Will I outlive my child (the worst fear a parent has)?”
The drive home was a blur. I don't remember if we even talked about anything because I was so out of it -- stressed out and exhausted while holding a ton of paperwork with information about all our next appointments.
Later that week, Nick and I had a heart-to-heart chat that really helped us move forward. We made the decision that Maddox's CF would just become part of who we are. We were not going to hide it. We were not going to let it hold us back from living a life that made sense for us. We would adapt, support, and move on. This has been our mentality ever since.
Next, we decided that we needed to tell our parents and closest friends. It's one of those memories that I will never forget.
With our parents, my brother, and our best friends in our living room, Nick made the announcement sitting in his recliner. “We recently found out that Maddox has CF,” he said, and we began describing it as best as we could (we weren't subject matter experts just yet). As you would imagine, they had the same reactions that we did. “Are you sure?” “How did you find out?” “Now what?” We explained to them that we had an entire medical team to help us, and well … we would just figure it out!
We had our first CF appointment with the entire CF care team a few weeks later, which included a physical therapist, dietitian, pharmacist, social worker, geneticist, nurse, and doctor. They each explained at the highest possible level their role on the CF team and how they could support us along the way.
And sure enough, our support network is right there with us to help reinforce our message to Maddox. Our family and friends jump in to do a vest treatment with him whenever they are over. When we are all about to eat and I am setting the table, someone else is jumping up to get the enzymes ready. This is our “normal" life. Our journey has only begun, and I can't wait to see what is next. Potty training?
