I have been working with a supplier for several months now and she has always shown a real interest in Joshua. So this week, when I was sending her her pay, I also enclosed a copy of a couple of articles that I have written for Cerebra, for her information. She received them and left a voicemail message at work for me to call her as she was “very touched”. As I was driving to school yesterday for an orthotics appointment with Joshua, I called her back : she began the call be repeating how touched she had been that I had shared something so personal with her and that my writing had moved her, she had not appreciated how my life was, until she had read my articles. I reassured her that I do not impose this on everyone that I meet, and that I had sent them because she had shown such an interest in him.
But the call went on for 20 minutes, with her telling me how amazing I was for my positivity and how tough our life must have been and how much we had been through . I kept thanking her and trying to change the subject, but she would not be distracted. By the end of the call I was frustrated and began to get defensive on Joshua’s behalf. In the end, I told her that she had no need to feel sorry for us, that he was a joy to be with and that there were plenty of things to celebrate about our life : For instance, I told her, I do not need to worry about Joshua joining a gang and being stabbed on the streets as I always know where he is. I surprised myself by how angry and defensive I became. She was making me out to be a brave victim and I do not feel that way at all; I have a lot to be grateful for, so I needed to put her straight. I told her that our recent 18th birthday celebrations will have been unlike most others, but that they were simple pleasures : how many other 18 year olds would be so delighted by a birthday tea at Donalds?! Joshua finds pleasure in simple things and he shares that with us. To feel sorry for us, is to miss the point and is actually insulting to Joshua.
Of course, you can feel sorry for us when we end up in A&E after seizures or when Joshua loses his vocabulary because of uncontrolled seizures. Yes those events have been heart breaking. But please do not feel sorry for us on a day to day basis, we are blessed in many ways ; Joshua has introduced us to a world and to people that we would never have met if he had not been born the way that he is. I do not regret having Joshua ever. While I sometimes feel sad for him, that he has not had the childhood that he deserves, we are definitely not victims to be pitied. I do not write as an outlet to whine, I do show the struggles that we face but I also try to illustrate the joy and fun that Joshua brings to our lives and I aim to be balanced in that. So please do not feel sorry for us as a family, but share in the joy that he has to offer.