When Carys was diagnosed with Rett Syndrome, something profound happened in my life. At first I didn’t quite understand what James was telling me, that this perfect little child had something wrong with her. I had no idea what Rett Syndrome was, even after James explained it to me, I had no idea the gravity of the diagnosis. I went onto the internet to read about Rett Syndrome, and the more I read, the bigger the lump in my throat got, I grew more and more hollow. At that stage, I could only try to imagine the devastation that Bonny and James were feeling, and I had a dilemma of my own, I had no idea how to deal with this. All I could do was offer my support and friendship, to try to be a best friend to James and Bonny and guardian to Carys, anything I could do to help cushion the devastation of a new diagnosis. When James said he was going to be raising money for a cure, my response was that “we” would be raising money for a cure, no matter what the cost, I was determined he would have someone to lean on when he needed.
Carys has made me far more introspective, she has affected me in ways that no child ever has. I have many nieces, nephews and God children, I love them all, but they have the advantage of being able to talk to me, which means I find it relatively easy to communicate with them, especially when they get to an age where we can. I’ve never been good with infants, always been a little (a lot) terrified of them to be honest, fragile things and I don’t mix well with fragile. I’m clumsy, big and most times pretty scary to tiny things. With Carys, I have been forced to find a way to deal with this and it’s been really tough, I had to learn patience and understanding. I’ve had to learn to give in a very different way but it’s all paid off, because now when I see Carys, she smiles at me. While I’ve always found it easy to talk to people, now I’ve had to start listening, not just listening for a voice, but listening for the things she wants to say, but can’t; for Carys, a smile and a cuddle means so much. Carys also teaches us, she teaches how important little things are and how the most minute seconds can’t be taken for granted. She teaches us empathy, bravery, strength, patience and she teaches us about selflessness. You cannot afford to ponder things, you just have to do them and get on with it, face up to what is required because it has to be done. That resilience in decision making is found across all the Parents of Children with Rett Syndrome that I have met, and it’s no different with James and Bonny.
James and I have what I can only describe as an honest friendship, there is nothing that gets hidden, no matter how brutal. It’s because James is the most honest person I know, he is truthful to the point of sometimes being tactless. He doesn’t lie, he doesn’t skirt issues, he tackles everything in his life in exactly the same way, head on. He is incredibly determined, sometimes hard-headed and stubborn, but he does listen, he listens and then asks the questions other people are often scared to ask. You only need to know James to know that he is undaunted, whatever he sets his mind to he completes. Whatever the challenge, whatever is needed, he pushes on till it’s done, he always completes things. In most cases without the training that was required, blistered, broken and bleeding, but he will finish.
I’ve tried to do every challenge I could with him (some I haven’t finished), and done some more on my own, through the last two years my cause has grown from only being about my friends and Carys, to a whole lot of new friends and children with Rett Syndrome that I have met. My cause has extended to include people who are affected by Rett Syndrome, which doesn’t only affect the child, but everyone in it’s life. This cause has taught me empathy, humility, and the power of the human spirit to rally and support those who need it. It’s taught me about the generosity of human kind, and for all the bad parts, it’s showed me so much of the good.
I have learned to hate the word “imagine” used to describe Rett Syndrome, it’s almost impossible for someone who isn’t directly affected by something of this magnitude to “imagine” it. I am close to the subject, very close, every day I speak with moms, dads, brothers, sisters and friends who deal with the affects of Rett Syndrome in their lives, and everyday I’m astounded by their strength. I have realised that those times, when I was supposed to be “imagining” things, I was nowhere even close to what that means. I learn a new pain every day, I read something in a blog, or in a group, or just something said to me in a chat, that makes it difficult for me to respond, that makes me want to cry. I’ve also learned that these children, affected by these horrible afflictions, are beautiful in a way that is so difficult to comprehend, so fragile, but so strong, so pure and so brave, there is so much more to them then people realise, the perfect paradox.
I have learned it’s not just about a cure, it’s about care, caring for our children and caring for each other. I’ve learned that if we want things to change, we can’t sit around waiting for it to happen, I am not trapped in my body, unable to speak, unable to walk, unable to control my movements, anxious, alone, frustrated, a prisoner of my own biology. We are in control of ourselves, and we can no longer sit around waiting for the world to change. I think the reasons I chose this song are obvious, because I hope we have started with the answer.”