Mon 16 Jul 2012
Hi, my name is Lauren. I am twenty one years old and the eldest of two children. My life is just like yours but I have a younger brother with severe haemophilia A.
I was five years old when my brother was diagnosed and I can still, to this day, vividly recall my mother coming to pick me up from kindergarten and bursting into tears. In a way, there was a feeling of relief within our family, relief that we finally knew what was wrong. We had spent months at the doctors, specialists and hospitals trying to find out why he was constantly covered in bruises.
The relief of my brother’s diagnosis was short lived. He had to spend hours a day at the hospital for infusions and we made many late night trips to the Royal Children’s for bad bleeds. This became part and parcel of our daily lives.
My parents were amazing, they made sure that I was never forgotten, and constantly told me how much they loved me. But, despite their best intentions, they often had to spend a lot of time away from me. As a young child, I could not fully comprehend what was happening around me, or that my parents loved us equally. I felt neglected at times but this only seemed to increase my feelings of guilt for being so selfish when my baby brother was in pain and in hospital.
I found myself, when I was younger, wishing it had been me who was sick, just so I’d get to spend more time with my mum. It all seems quite silly now, but back then I thought that if it was me who was in hospital, then I’d get treated like I was special. There were lots of times I felt left out, or neglected.
My brother and I now have a very close relationship, I have grown to respect the person he’s becoming because he has always faced every challenge and every set back with a huge smile on his face. These are qualities I try and put in to place in my own life.
I think siblings are a group that often get overlooked. People can forget that bleeding disorders affect an entire family and this is why I’m writing this story, so that I can connect with other siblings in our community, who may have previously felt like I did – alone.