As the mother of disabled kids I am very used to organising and preparing for the near future. I seem to spend a lot of time working out care rotas 2 weeks in advance and preparing for appointments and following up on anything raised during them.
However, I do not spend a lot of time thinking about the distant future. The furthest I tend to look is if we are discussing what to do about next year’s holiday. This is partly because it uses up enough energy just thinking about the day to day, and partly because I don’t believe you can predict the future – life is always evolving, and we all know that it can change in a split second and never be the same again. That is true for anyone, not just those of us with health issues or disabled youngsters.
For myself, I know I am lucky to be this healthy at my age, and, as part of the first generation to survive to adulthood with my condition, the future is uncertain. I know that I will deteriorate – there are several studies that state that the Fontan circulation will eventually fail and that liver cirrhosis is a strong possibility, even inevitable. Many single ventricle patients are facing the prospect of a heart transplant – but that is no easy solution as our condition complicates the prospects of transplant being successful. Obviously that isn’t something I look forward to, and so I do my best to try to keep as well as I can by taking my Cardiologist’s advice, trying not to stress (not always easy) and trying not to physically exert myself too much. As a family, we are fortunate that our Local Authority has taken on board the prospects for my future health and provided our family with support. This will not stop the unavoidable happening, but it does mean I am actively trying to help myself so I will know I have done my best.
It has occurred to me that my husband could end up caring for elderly parents, 2 disabled young people and myself!
As for our young people, we are trying to teach them to direct and organise their own care, as this will be, possibly, the most important life skill they have to learn. Money skills and the handling of bills and personal budgets are all skills every young person has to learn. It does worry us (e.g. when we walk into the bathroom and it’s a mess) about the quality of care they will receive if we are not there to oversee it, but we can only hope that they find Carers as good as the ones they have now.
We have spent the last 5 years working to make our home completely accessible for them, and, whilst, we would love to see them make their own way in the world, we also want them to always have a place they can come to where they know they will be able to access all the rooms in the house. Besides if I do deteriorate I can always use the lift too!
Just like everyone else with children, I hope they will get as close as possible to achieving their aims, hopes and dreams; I can only hope that society learns to see their value and potential, but mainly I want them to grow up and continue to have happy, fulfilled lives, surrounded by people who love them.