The other day someone asked me a question. It is likely not a question posed to most mothers who lose a child, but is reserved especially for those who lose a disabled child. At the same time I'll bet it is a question that many people want to ask but stop themselves. And they should be proud of themselves for stopping, and somewhat embarrassed by thinking there is more than one answer.
The question: Do you feel like a large weight was lifted off of you when Maggie died.
The answer: (Silence and staring for a long minute and then,,,) NO. I feel like my daughter died. I feel like any mother does who loses a child. There is no relief, there is only an aching sadness and overwhelming sense of loss.
The questioner was honestly curious and sort of surprised at my response. I, on the other hand, was dumbfounded at both the question and his surprise. I am not sure if this will make sense to anyone, but it was so galling that it wasn't even offensive. Actually I sort of felt sorry for him and his inability to see and appreciate life in forms other than his own.
Sort of. But not enough to give him a break.
I looked him right in the eye and said, "Yes, being her mother was a lot of work, but that was her life and that was my life and we all found joy in that life that was taken away from me. Now I don't have it anymore and I miss it every single day."
My tone let him know the discussion was over.
I doubt he understood my answer. Because someone who asks that question is so completely out of touch with the fullness of Maggie's life - and my life with Maggie - that he could not possibly comprehend that it was anything other than a chore. He never saw the reward. That is his problem, not mine.
I got my reward 1000 times a day. It was like a slot machine that just keeps spitting out winnings. And then the slot machine was gone. The payoffs stopped. And that makes me sad. And it would make any mother sad.
It's a stupid question.
Far and away the best prize that life offers
is the chance to work hard at work worth doing.