I sat on the old park bench with my two incredibly lazy dogs and people-watched. I saw you run around, laughing, smiling with your adorable son. I’m guessing he is around four. Both of you, in hysterics over your game of peek-a-boo. It made me laugh. It is one of those perfect sights that makes a young woman like me think of herself as a mother one day. It also made me think that you must need boundless energy to keep up with your giggling little munchkin. As soon as he caught sight of my little balls of white fur he ran straight over, you, a few footsteps behind, trying to keep up. He insisted on hugging both of them and asked me if they were twins. Then as I was responding to his many questions he coughed, abruptly and intensely. You were unfazed and apologised insisting he isn’t contagious.
He has “Cystic Fibrosis” we both stated in unison. We spoke about Orkambi and research and you told me about how you encourage as much physical activity as possible. You were so optimistic and enthusiastic, it was contagious. You made me think of how different life is now for people being born with Cystic Fibrosis. A far cry from my mum’s birth and odds in the seventies. You brought me back to a place I hadn’t been in a while. I am in this constant battle of emotions. I am torn between feeling resentful that my mum never lived to avail of the numerous treatment options out there today and also incredibly grateful that so many others lead such different lives and will have different fates. Most days, I focus on the positive. The endless emerging therapies and the stepping stones leading to an eventual cure. Some days, every so often though, I wallow. I wallow in that dark place where those options didn’t exist. Where the light at the end of the tunnel got further and further away from us and every passing day our hope diminished. You know what though? That’s okay. Grief is a complex thing.
Thank you, kind stranger, for the reminder that now, there is so much light. So much hope. Even in my dark spaces, people like you interrupt my solitude with your bright lights and music. I hope your son has a life filled with light.