Life with a child with mental disability

For 19 exhausting years and I don’t even know how to explain what and how it hurts me. The “perfect” description of my life and many like us.

“You stay at home… you don’t always have your boss blowing your head off”, so some say.

Yes, I stay at home but I am responsible for a life…

Life with a child (now an adult) with disabilities is not as rosy as you see it, the one who envies my life because I “stay” at home.

Yes, I have a well-established schedule. I serve him food because he can’t do it himself, I do his toilet as many times as he needs to during the day. I take him for walks, take him to check-ups, to therapy and to school every day, I guess what music, drawings, stories he wants to listen to. I try to find out what hurts him but he can’t tell me or show me, sometimes he doesn’t even want to. There are days when he screams, is agitated, throws, hits. My body and psyche have been holding up brilliantly for 19th years since he was diagnosed:

Autistic features
Moderate retardation
ADHD conduct disorder
Oppositional defiant disorder
Language development disorder….

I was hospitalized with him for about half of his life. I slept right on the edge of the crib in the pediatrics when he was a baby, because he had bronchiolitis once every 3rd months, and in bed with him later, also in the hospital, but in the psychiatric ward this time, in Bucharest. Year after year, the same road, the same torment, the same route, the same routine.

You may have 3 meals a day, I sometimes eat once a day and then on the run.

You may quietly cook, clean, iron. I commute between the rooms, kitchen, bathroom. And there is a lot, a lot to say.

Anyway, many of you don’t understand anything, especially those of you who have a “perfect” life. If you have one. And if so, you should kiss the ground and say hundreds of rosaries daily, thanking the Lord every second of your life.

What do you say now, do you still envy me for my “peaceful” life?

Post taken from Elena M. and adapted for my situation and that of my son.

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