Missing what’s important

I am waiting to hear from Teressa as to what she is planning for this weekend, I don’t actually know when she will be here for us to meet John. I know he was due to land at Heathrow at 6am today, so I doubt after 8 months apart if I will hear anything from them at all today. Their plans are to hire a car tomorrow and drive up to Scotland arriving sometime tomorrow at her step brothers in Dunbarton where they are staying until after the wedding. I would expect her to be here on either Sunday or Monday as they have a lot still to organise for the wedding on Thursday. I also know that one of the reasons that they have chosen to travel by car is it will give John a chance to see a little more of the country than you actually see from a train. Also with the freedom to go where they want, Teressa wants to take him on a tour of her childhood, from Rhu were we moved to when she was 3, through to where she was living prior to her Father taking her to New Zealand. Because I know she has so much to do I don’t expect to see her more than once on this visit to Scotland, they aren’t having a real honeymoon as with the cost of getting John here, the wedding and all the lawyers fees

I still can’t help feeling that I should be able to help her more with the setting up of her knew life, if I had still been working it wouldn’t have been a question but finding yourself, not just financially but physically unable assist in any other way than to give her my love and wish them the happiness they deserve. These are the times when disability really shows it face, day to day it is just there, just something that I live with but when big occasions appear, well that is when it really affects you. I can deal with watching the actual ceremony on line, but what I miss is all the mother of the bride stuff, the getting her ready on the morning, the rushing around before searching for the little things that always manage to vanish no matter how well it was all planned. The laughter and love that goes with all those small things that build the great memories of life. These are the times that I feel locked in and lost to life.

When people think of living a disabled life they don’t think of these moments. No matter how well a building is built, how good the ramps or the lifts, if you can’t actually get to it in the first place, it just doesn’t matter. The day to day difficulties all have solutions, there are always ways of managing and coping, they just have to be found, and even then as time continues if there are things you have to give up on, well eventually they don’t really matter. Then up pops a major milestone, one of those life changing days that we mark, celebrate and look forward to. It is then that you suddenly realise just how much you are disabled. It’s mad I know I have been disabled for years, and I have found a way through every stage, adjusting and enjoying my life just as it is, I have accept it all. Teressa wedding has suddenly made me wake up again to just how disabled my life is. I think I knew when the first wedding invitation arrived, when the wedding was meant to be in January, that it was effecting me in an odd way. I remember looking at it, appreciating the humor of it and feeling like there was a cavern the size of a double decker bus inside me. That cavern is still there and there is no way of filling it, I can’t be part of her day because my health has me trapped.

I’m happy for her and I so want her day to be the best that it can be, I’m just so terribly aware that I won’t be there. That is what disabled means, missing the big things in life.