My sister Ros and I woke up early and boarded the 9.30 am train to London then onto to Bognor Regis to meet my niece Jo and her lovely two children . It was long but good journey as I limped off the platform still trying to straighten out my back from the 90degrees of the sitting for so long. The time was precious on the train as Ros and I talked through some hard decisions and were able to talk frankly about the reality of both our lives. My with MND and hers as a carer in the UK .
The sun was warming our back as we entered the house via the busy seafront of Bognor. The hard part of the day was sitting in the lounge when we arrived and wanting so much to engage with the children. Normally I would be joking and teasing them and darting about with my energy button turned on full . I just love children and their perspectives on life , their innocence and their curiosity so not being able to play is one of the worst things for me as my energy was turned low and stuck in that position.
I did help to cook for the family fajitas but then watching everyone eat made me so hungry that I resorted to soup again !! Then we sat around and chilled a little whist Ros and Jo chatted about past times and I eavesdropped. I wanted so much to intervene to catch but I was just too tired to type every thought out and when I type out I am usually a few minutes behind the conversation but they got used to that and accepted that they had to backtrack a little
As I tossed and turned trying to sleep my worrying thoughts visited me about the future of not being able to walk and how long that might be . This is such a guessing game as initially I was completely convinced that I would be walking and typing until my last days and that my chest would give in first but not so, and my biggest fear of being “locked in ” might be a reality . So what I must consider now is the importance of every moment TODAY and to stop wasting time worrying about how I am deteriorating and the future as I cannot bring back the yesterday’s .. no one can. I as society we do moan a lot … Me included about I haven’t got and what I would like but every day we make our memories and can’t go back and relive them and I must return to those special moments …
Today was seeing my niece and her kids at the station and seeing them so excited about seeing us, that was very very special … and when I focus on those positive things t is so interesting that my increasing strong spirit inside soars above the debris of deteriorating body which is trying to pin me down .