Looking back to when my younger brother Joshua was born in 1993, our family had no idea what cystic fibrosis was and even more so, we had no idea what the road ahead looked like -- almost 19 years in and out of the hospital, daily physio, 37 surgeries, a double-lung transplant and now cystic fibroses-related diabetes. To sit here 28 years later and nine years post-transplant and say I couldn’t be more honored to tell Josh’s story would be an understatement.
My major memories of our childhood mostly consisted of the times Josh was in the hospital. In Ireland, the hospital in our town is a large and well-established one, but it didn’t facilitate people with CF. The Royal Belfast Hospital for Sick Children was a two-hour drive from our family home but very quickly became Joshua’s residence for the next 19 years. At the time, I was 10 years old, so I didn’t fully understand the magnitude of his illness, but as we got older and we started to get more information, I always had thoughts about what it would be like if he didn’t make it through another surgery. It seemed like a strange thought or maybe even a bit dark, but then post-surgery, there was Josh on his feet trying to run around, make jokes, and enjoy life as if he wasn’t just under the knife. It was unbelievable how it never phased him; he was always positive. For as long as I can remember, he has been saying, “I’ll be the last one standing.”
Josh wasn’t the only person in our family who had CF. A relative of ours married a man named Gavin, who has CF. We would spend vacations with the whole family in Donegal, Ireland. The first thing that was crazy was that if Josh was in the room, Gavin couldn’t be. They had different types of lung bacteria -- Josh had Pseudomonas and Gavin had B. cepacia. It still was weirdly bonding for them and the family.
Josh had so many friends in the hospital who are, unfortunately, deceased now. They built close friendships through glass windows and doors, shared stories, and gave each other hope. When Josh came home from the hospital, he talked about his friends like I talked about mine. My experiences were playing soccer, going to the shops, or hanging out. His experiences were watching the same movie in separate rooms, ordering takeout, or talking through doorways. I always looked at that and saw happiness. He was isolated but had friends. He smiled -- that smile that hurts your face after 10 minutes and won’t go away. Seeing him every day, smiling and joining in with his “CF brothers” made me feel so great inside. He made me feel pride before I really knew what pride was.
Joshua was a good soccer player and always gave his full efforts when he was able to play. I remember a day in Spain on a vacation when he played in 80-degree heat for two hours. It is such a great memory that we share as brothers because CF wasn’t a factor. It was a day where he was just an athlete, playing with people from different parts of the world. His soccer ability allowed him to fit in and that was all people knew.
After this holiday, Josh spent the next few years (age 15-19 years old) in a wheelchair, holding an oxygen tank. During this time there were few moments of hope, but Josh -- our source of strength in the family -- was adamant he would get his transplant, and he would be fine. Around nine weeks before the transplant, Josh was rushed to the hospital. A hole had been found on his left lung and his lung function was at an all-time low. During this spell in the hospital, he had his last rites read to him – the third time he had heard them. He fought against it. His lung function rose, and he was allowed to come home. Two weeks later, he got the call. There were lungs available from a lady in England, and she saved his life. He flew to Newcastle, England, and got the 13.5 hour surgery. It was a scary, nerve-wrecking time for the family, but it was so joyous that it would be hard to explain the feeling. Josh had his shot at life now, and he is living it so well.
I speak to Joshua every day on FaceTime. Living away from home is hard but knowing that my family is happy and healthy is important to me. What I have taken from him and put into my daily life is to see the best case in any outcome. It’s to show people that you can reach for something and it can be achieved.
To have someone so close to me inspire me every day by simply being himself is so special.
I will never fully understand what it is like to be born into a world where you are seen as different from Day one -- where people around you don’t know what the full scale of your illness is. What I will always know is that Joshua has gone through more struggles than anyone I have ever crossed paths with, but he is the strongest, most positive, caring, and mentally unbreakable human in my life. He took hold of his illness and he fought against it his whole life. For those first 19 years of his life, people always talked about him dying, but Josh always talked about himself living. This is a story of positivity, strength, and determination. This is a fight that may never end, but a fight Josh has been winning 28 years and counting.
Interested in sharing your story? The CF Community Blog wants to hear from you.