My Mum has been in hospital for over four weeks now; she has been really unwell and they have been treating the symptoms of an unknown condition for a month now. But this week we finally got a name for her disease, a diagnosis. They performed another biopsy yesterday to identify what strain of the disease she has, so that they can pin down what treatment will be best for her, so finally we feel as though we are on the right tracks, that after so long in the dark, she can be helped to get better.
I am sure that I have mentioned before that Joshua was diagnosed with ‘devastating brain damage’ at just four days old, so we have never had to wait for his diagnosis – it has almost been there from the start of his life. So it has been in the background of everything that he has achieved or failed to achieve and once that news is delivered in the blunt way that it was, it can never be forgotten. I am a master of denial, and so as he achieved his milestones of walking and talking, I could almost convince myself that he had defied the odds and that his diagnosis was in error in his pre-school days.
This however is not the case for many of Joshua’s peers at school, several of whom failed to thrive or develop as they should, and then investigations got underway to try to find out the reasons why. Often parents have a battle to convince medical professionals that there is a problem. This must be frustrating, but I also envy them their innocent. ignorant baby days when they thought that they had a perfect, normal baby, as we were deprived of this. They were able to day dream about what their new baby might achieve in life – what job he or she might grow up to have and how they might find a partner and have a family of their own. We have been deprived of a long term view of Joshua’s future : I can recall being shocked in the Special Care Unit as we were reeling from the diagnosis, when my husband quietly said ” He will never be able to drive”. I looked at the skinny baby in an incubator, surrounded in tubes, and could not envisage him ever leaving SCBU, let alone wanting to drive a car when he was 17. But from the moment that you find out that you are pregnant, your mind begins to speculate and envisage a future for your baby; a life like the one you had perhaps, where he succeeds at school, goes to university, gets a job, marries his childhood sweetheart and has a baby.
We are where we are and in many ways, Joshua has defied his diagnosis by achieving so much more than was expected of him, and I could not be prouder of him on a daily basis. On balance, a diagnosis represents valuable information as it explains the context of what can be seen but it should not define anyone, as first and foremost, Joshua is who he is, he is not his diagnosis. I know that parents of children with Downs Syndrome or Autism, often feel that their children are defined by their condition; but it should be just one piece of information about them, like an eye colour and gender, not the only thing known about them. A diagnosis should be a positive step forward, not a negative label; it should open doors to more support and treatment and we are certainly hoping that will be the case for Mum, as well as Joshua.