This week, I read a phrase in the newspaper that stuck with me: «Parents with healthy children are the wealthiest in the world.» This is what Dolores Lamas, a 76-year-old woman from Cambre, said. She has a son and a daughter living with the rare Norman-Pick disease, a disease without cure. Reading the article, where she spoke about the idea of finding an assisted living facility for all three of them, I began to think about what the word «future» means in such a complex context, about what it means to live with the uncertainty of not knowing who will take care of your loved ones when one is no longer there. I also thought about how defenseless the families affected by so-called rare diseases must feel because «the lack of scientific knowledge (…) tends to cause a delay in diagnosis,» not to speak about navigating an overburdened healthcare system.
The case of Dolores Lamas’ family led me to read again the news about Rosario Vilasa and Severino Basanta’s family, two octogenarians from Xove worried about the future of their four children with disabilities at more than 80%, and talking about the future assisted living facility by Aspanane (Association of Relatives of Intellectually Disabled People of Viveiro) and about what it means to know that their children will be able to continue living together and being taken care of when they are no longer here.
I can’t even imagine the lives of thousand of families who live with the uncertainty of future care for a dependent offspring, but when the media share with us their lives with respect and empathy, it helps us approach them and reflect about the system of mutual care that upholds our society, about the infinite humanity of those who fight for their loved ones’ future despite circumstances.