One year ago today..........

One year ago today I had never heard of Biliary Atresia. I had no idea about liver disease in children, the thought of a baby needing a liver transplant was incomprehensible. I had little experience of hospitals or how life around them can be so frustrating. I knew nothing of real stress, anxiety and worry - the kind that leave you breathless and literally frozen in fear. I had no idea of how much a baby can suffer when they are critically ill or what a nightmare gaining IV access in babies can be.

One year ago today my only worries as a new mum were how to shift the baby weight and whether I could cope with a few hours less sleep. I had no idea what the term LFTs stood for or what GGT, ALT, AST, Bilirubin, Tac levels were or how these would dominate my thoughts and fears.

One year ago today we were only just getting to know our daughter, we were still waiting to see her smile, hear her laugh and watch her grow.  I had no idea how many times my heart would be broken by watching her suffer painful symptoms and undergo frightening procedures. My heart has also be broken by the many sick children we have met along the way or who's story I have heard. I think of some of them often.
One year ago today I thought success in life could be measured by your career, your bank balance or the social circles you moved in. I had hopes and dreams for Erin that involved her becoming a success through a profession or by making money. Now I have simpler hopes, I now measure success by a persons morals and how they view life and are viewed by others. More than anything I just want her to be happy, someone who has a positive impact on the lives of others and can measure their wealth in terms of friends and family who  admire them.

I am a happier person than I was one year ago today. I have a better perspective on life and take pleasure from the simple things that used to pass me by. But I am also more anxious than I have ever been, when the stakes are so high the slightest blip can leave me on edge until it is overcome.

Our lives have been so enriched by Erin's arrival but have become infinitely more complicated than I ever thought possible. I wouldn't wish this roller coaster ride of BA on anyone but it has had some positive side effects. That said let's hope the next year is a bit quieter........

21 August 2010