Being a chronically ill parent

Today, my kid asked me if I remember when I used to pick him up from school. Then he talked about a specific time, it was over a year ago when I had gotten a bit stronger and picked him up for the first time in a couple of months. He remembers that we stopped by the swings on our way home and that we cooked vegetarian pasta carbonara for dinner. It was a Friday and for the following month (or maybe half a year?) he wanted us to repeat that afternoon and stop by the swings and cook carbonara every Friday. I haven’t picked him up from school at all since May last year. My health got much worse during last spring and I picked him up a few times but when school started again after the summer I was in such a bad shape that it has been out of the question.

He hasn’t talked much about it during the last months but today he brought it up and I realized that I haven’t really explained to him properly why I don’t pick him up from school, take him outside to play or go to the library or to be honest, why I’m almost always at home and have to lay down most of the time.

Today I told him that the reason for not picking him up is that I’m ill, but I hope I’ll feel better later and can pick him up from school again. He smiled and told me he wanted that. My heart is breaking because there is no cure for ME/CFS at the moment. There may be one in a couple of years but that’s not for sure. I lied to him because the situation caught me off guard.

On top of my child being autistic and the demanding everyday life he has in school, he also has the burden of having a parent that  isn’t well. I’ve been so focused on finding an accessible school for him and focusing so much on his health and well-being that I completely forgot that I need to explain my health and limitations to him.

So, now I have a new task to figure out how to deal with. I don’t want him to feel confused so I definately need to explain to him. But most of all I would like to get rid of this awful disease, ME/CFS, and start picking him up from school again. It hurts to miss out on so much of his life outside of our home.


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