“I told myself I had to be the strong one, but emotionally, I was struggling": Men's Mental Health Month

Penelope made a magical entrance into the world in July 2016, but very quickly, our world was turned upside down. After failing to do that first stool, and consistently not feeding, her stomach started to swell and she was swiftly taken by ambulance to hospital in London, where she was operated on. They removed the meconium ileus (along with part of her bowel), and she was given a stoma. She was diagnosed with cystic fibrosis at just two days old.  

Hearing the diagnosis, I immediately went into survival mode. I knew nothing about CF and was consumed with fear about how it would affect Penelope, my wife, and our three-year-old son. I felt lost. I felt grief. I felt blame.  We were robbed of those precious early baby moments with Penelope. I told myself I had to be the strong one, but emotionally, I was struggling.   

The CF team was so good in giving us support and information, and answering our endless questions. We were also blessed with a brilliant support system at home – our family and friends were our rocks in those early days, and still are today. 

Penelope's diagnosis changed me forever. It forced me to confront a trauma I never expected. While it shook me, it also made me stronger. My wife and I often reflect on those dark times, wondering how we got through it. But the key was that we faced it together.  

Every day, we work as a team to ensure Penelope lives her life as any other eight-year-old. When people hear about her condition, they always say, “you’d never know”. We manage her care diligently – never missing medications, doing her daily physio, and ensuring she has the tools to stay healthy. We avoid the risky environments and take extra precautions, like washing our hands often. It’s become part of our routine. 

The advice I would give to any parent who has just been given this news and who is struggling is to allow yourself to feel how you want to feel. Be kind to yourself. Try to find that one person who you can talk to. Allow the bad days to come but absolutely enjoy the good days. When Penelope was lying in that hospital crib, days old, and we met our CF nurse for the first time, she told us “CF isn't the diagnosis it used to be. If you are going to be a baby born with CF, now is the time to be born.”  It seemed a strange thing to say at the time, but now I totally get it.  With advancing treatments, I really hope a cure will come in this generation.  

Don't let CF be something that fills you with dread. Instead, embrace the opportunity to get involved with the amazing CF community! We love participating in fundraising events, whether it's collecting donations outside the supermarket or running 10k races for the cause. Celebrate milestones like Wear Yellow Day by making it special for your little one. It’s the perfect time to reflect on how far they’ve come and celebrate their strength!