NINE MONTHS of excitement and anticipation preceded his birth. The first-time parents checked all the boxes of preparation. They asked about the most used baby items, were showered with love and gifts, and the nursery was decorated and well-stocked. The maternity photos captured the essence of this season of their lives.
Shane and Cailey Warren welcomed their newborn son, Nix, following a normal delivery. For nine days, they lived the normal, happy, chaotic life of first-time parents. On the 10th day, normal would be redefined.
Cailey said, “They called us on Thursday and said his newborn screening in the hospital flagged for Cystic Fibrosis (CF). They said this can mean it’s because he’s just a carrier or he actually has CF.”
The first step was a trip to Birmingham the next day for tests.
Friday, as they rushed to leave for Birmingham, Cailey knocked off a stack of cards with various Bible verses. Her first thought was to clean up later, but she returned to tidy them up instead.
“The card that I [randomly] put on the front was Jeremiah 1:5. It read, ‘Before I made you in your mother’s womb, I chose you. Before you are born, I set you apart for a special work.’ I had to take a picture of that card,” Cailey said. “I told my husband I’ve never had such a God-speaking moment in my life. I know that this is Him telling me what we are going to find out today. And four hours later, we found out he has CF. You read something, and you think, ‘No. No, God, that’s not what you’re telling me. It’s just a coincidence. It’s not going to happen.’ At that moment, I knew this was not something we would be able to do ourselves. God was telling us we better get our minds back where they need to be because we wouldn’t be able to go through this alone.”
And she was right.
The sweat test confirmed Nix has CF, and bloodwork determined his second mutation. A few days later, the couple returned to Birmingham for all-day training.
“So it was boom, boom, boom. Nix has around five oral medications throughout the day. He has doses before he eats every time. There are chest therapies that we have to do. It was nonstop from there,” she said.
The training and medication schedules left little time to process everything happening to them.
“It was terrifying. We were angry and mad,” said Cailey. “As a parent, there’s nothing we can ever do that’s going to take this away from him. That’s a feeling no parent wants to feel. It’s so hard to get to that complete acceptance when you know there’s just nothing you can do to take that away. It’s a gut-wrenching feeling.”
So what do you do when you feel there’s nothing you can do? You do what you can. You do all you can to ensure that CF does not define your child. You do all you can to raise awareness about a condition that is life-changing but invisible on the outside to the casual observer. You celebrate the same milestones and good things that other parents and children celebrate, but you do so with an even deeper appreciation. You look for strength from above and accept the help offered on earth. You take one minute at a time.
Cailey said, “This diagnosis doesn’t define our family. We’re raising Nix to know that CF is going to be a representation of strength and tenacity and not one of weakness and imperfection. You always wonder if you’re making that decision for your children, but the awareness we’ve been able to raise and the families and friends we’ve met is a constant reminder that this isn’t something you can do by yourself. You have to have that community to make it through something like this every day.”
The decision to share their journey has not been easy, but the support they’ve received through it has affirmed they’re on the right track. The importance of helping others understand CF benefits all families living with the condition.
Earlier this year, Cailey began posting about their life with CF on Instagram and Facebook. It’s not easy being vulnerable, but the payoff has been priceless. They connect with others farther along than they are and can relate their experiences to families just being diagnosed. It’s like a coin. Families living with CF are on one side, and the community that does not live with CF is on the other. Each side contributes value to the life of someone with CF.
Cailey said we can help. “Share a post that you see, or, if you’re out and about, and you hear that someone has CF, give them our contact information.”
That’s the currency of community. Let’s pass it around and invest in hope and encouragement for a future where no one lives with CF because there is finally a cure. GN