The diagnosis

An MRI scan picked up abnormalities in Corry’s brain just shy of his 2nd birthday. I knew then that whatever this was, it would not be good. I was given a year to contemplate, a year to think things through, a year to come to terms with what could be, but a year later, recieving his diagnosis of Alexander’s disease, I broke and have been broken ever since.
It’s easy to get sucked into a diagnosis. We spent the first 3 years of Corry’s life searching for answers, a name to work with, to enable us to understand, something to fix. But it didn’t work out that way for us. The answers we thought we would find cannot be found. So little is understood about Axd, research is limited and other than therapeutic support, we don’t have much else to work with.
I have been with my boy through his daily struggle to gain the basic abilities we all take for granted, to now face watching them be stripped away from him in the cruelest of ways.
I am frightened of what is to come, of what it will do to him, to me and to our family. But, despite this, I have hope. I hope he stays happy. I hope he remains strong. I hope he continues to find joy in each day and see the beauty around him. I hope he feels how much I love him, and can understand how much happiness he gives me. I hope he doesn’t see how painful I really feel. I hope for a cure. My lovely, beautiful, sweet boy.