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.
In the wake of Donald Trump’s rise to power I have been forced to confront my own feelings on some things. Everywhere I go there is some mention of reproductive rights. Something, somewhere always acts as a trigger. Websites chiming in, celebrities tweeting their own personal beliefs, a statement T-shirt on a crowded college campus, news headlines, a friend absent-mindedly discussing his overt views over drinks on a Saturday night, blaring radio segments, magazine covers, trashy red-top papers with misleading headlines, it doesn’t cease. Everyone has an opinion and most are forcing theirs down my throat. I sat in a crowded room, each of them bickering casually over their own thoughts and feelings. I reached into my bag to get my phone and instead met some old tablets. My mum’s tablets. Then it occurred to me that I hadn’t used this bag since before my mum’s passing. I held them tightly in my hand and my breath became shallow. Must. Keep. It. Together. Just as Birdy’s voice began to wind down I was transported back.
I sat in the kitchen of their house. It hadn’t even been four months since I had faced my greatest challenge. They had two children, their first has CF, now in her thirties, fit and healthy. Their second was lucky enough not to receive two copies of the gene. They spoke of their experience with their first child. They had never even heard of the disease. They faced shock, sadness and a steep learning curve. They spoke about all of it in such a ‘matter of fact’ way, emotions of their distress clearly in the past. They then spoke of their second pregnancy. This was when the tone changed. They tell me it was then that they realised they were pregnant with a ‘decision, not a baby’. My heart sank. I felt sick. I felt the colour drain from my face. I was already upset but now I was just disgusted. Did they really just say that? I had no idea how to feel. I was outraged, horrified, hurt, bewildered and just outright irritated. How am I supposed to respond to that? I zoned out. I was too busy immersed in my own grief and misery to defend my personal opinion. Then, they stated in a rather aloof ad stolid way ‘you too Christina may be faced with such a decision, since you carry the gene’.
Please allow me to set the record straight: I will never be faced with such a decision. A child’s life is not a decision for me. It isn’t a choice or something I can play with. Any child of mine will be loved and cared for regardless of their health or their life expectancy. How dare you confront me with your ideals.
I understand everyone has a journey and I don’t understand that journey unless I have lived it myself but this is my opinion. Please don’t talk to about my future. I believe in being informed, prepared and educated on these things but I certainly don’t believe I have a say in any of it. I don’t want a choice, not in this scenario. Unless I explicitly ask for it, I don’t want your advice or thoughts.