Regularly readers know that occasionally I mention my disabled brother, who I look after full-time. Blogging about other things that matter to me is my way of saying I am more than a family care giver.
That choice occasionally comes up. Like a surrogate twin refused by a couple because he has Down Syndrome. Naturally, another mother has written about the joy and love in their life looking after their Down Syndrome child. It is a moving article.
Thing is, it does alter your life. It will be a constant balancing act trying to live your life and helping the one you care for live their’s to the full. People will judge you all the time. You will have moments of joy and bliss. Sleep deprevation, anxiety, and a heart that regularly breaks. One you keep fixing best you can while hiding from the one that matters to you most.
My brother has a quality of life, and a gregarious personality. His joy at living is a pleasure to see. His learning difficulties will make him vulnerable and dependent on others for the rest of his life. He will never be independent.
Damn straight I would want to change that for him. I would go to hell and back to do that. Yet, there are moments where I am making that journey already just to keep his quality of life as it is. Somehow you crawl out, waiting for the moment you get sucked back in. You enjoy the rays of sunshine on your face before that happens to keep you going.
People question all the time if it is sustainable or whether I miss the life I did have before. The answer is that hopefully things can change to make things a bit easier. You never accept things as they are. Keep pushing for what you need, and the person you look after needs. Both of you are important.
Whatever decision you make, it is important you do not make yourself come last. That is too easy to happen. If you do, that is when you no longer have the network of friends you thought you had. The constant grind and routine scrapes the marrow of joy from existence. Do what you love, find the time.
A book changed my outlook on life as a child. The last page. “Danny The Champion Of The World” gave some sage advice: what a child deserves and needs is a parent that is sparky.
Not everyone is. That, in the final analysis, requires you to be honest about yourself. I will not judge you either way. You require support, not guilt tripping by anyone.
The decision is yours.
Article written by John Sargeant on Homo economicus’ Weblog