Since Sookie was born I have wondered, why me? I didn't do anything grand or amazing. I did power through something I did not think I was going to survive, but wouldn't we all do that? I do wonder, is this the world's way of balancing out former gut wrenching heartbreak that has occurred in my life? Why did I get a pregnancy that was (relatively) non-complicated and a healthy, full term infant... against the odds? I'm painfully aware that so many pregnancies that are deemed "normal", end in tragedy. I am reminded daily how lucky I am to have her in my life, but I don't believe I deserve it more than anyone else. By no means do I wish horrible things to happen, but nothing makes sense to me anymore. And I suppose that is where some of my guilt comes from. There is a book I once read during college, titled 'When Bad Things Happen to Good People'; the whole premise is bad things happen all the time, karma isn't responsible, they just happen. Good people don't get everything that they deserve, and so on and so forth. I wanted to like this book, really I did, but I don't feel like it tackled the tough questions the way I envisioned it would.
While I would love to believe in the ultimate justice of the universe, that karma really does take care of everything when all is said and done, I have not been able to see it for myself yet. (And I am a seeing is believing type of person.)
I don't know where I'm going with this, I really wanted to ramble about survivor guilt and how I know I am a good person and I deserve good things. But good things happen to bad people all the time. I have seen it over and over again. I have really been hit with all of this in the past week or so with everything that is happening in our tight Cystinosis community. We had a 23 year old lose her life on the 8th, and now we have a 17 year old fighting for her life in intensive care. Her complications and circumstances are a result of a side effect multiple doctors were convinced I had, post transplant. Talk about goosebumps and a million questions I will never be able to answer. I read this news on my iPhone while snuggling with Sookie (during our morning ritual of songs and books in bed) and instantly wanted to scream. I wanted to scream for many reasons. I wanted to scream out of unnecessary pain these women are going through. I wanted to scream for the agony this disease is causing their families and friends. I wanted to scream because this could have so easily been me at 17. I wanted to scream because I feel like I should be doing more with my life I've been given. I wanted to scream because I feel like I've done a lot already, but I need to do more. I owe it to myself, I owe it to my lifetime love, I owe it to Sookie, I owe it to those who didn't get the chance. I wanted to scream because we know it is possible not only to survive this disease, but to LIVE with it, finish college, fall in love, have babies, why can't everyone do what I'm (and others are) doing? I want every single member of my Cystinosis family to be blessed with the normalcy of certain things that we never thought we would get to experience. The normalcy of term paper deadlines, studying for finals, engagement rings, wedding plans, adjusting to the family dynamics of in-laws, morning sickness (that isn't from Cystagon), poopy diapers, decorating a nursery, making decisions about immunizations, all those beautiful issues of daily life.