Monday, April 24, 2017

Stupid questions for $100, Alex

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.
-Theodore Roosevelt 

Saturday, April 8, 2017

Celebrating and aware

My niece and goddaughter Clare is getting married today. Folks are flying in from all over. Everything is just about set. We are looking forward to celebrating this evening with her and her soon-to-be husband Joe.

Clare has just one sibling, Patrick. They are close, just 15 months apart and Clare has been a great big sister to Patrick. But Patrick won't be coming to the wedding. Patrick has autism and doing anything out of his routine and unfamiliar is very upsetting to him, as are unfamiliar surroundings and loud noise. All those elements together would be too much for him, so he is staying home. They have had private celebrations in their immediate family and there will be many more. Patrick loves Clare and if he could be there, he would. She knows that. And that is enough.

Patrick was a few years older than Maggie and my sister Mary was (and is) a huge support to me as I raised Maggie. Though our kids had completely different disabilities, there are more similarities than you would think. Parenting a child with a significant disability is a club unto itself and my sister and I were both members. We have the same weird sense of humor and could laugh at the absurdity of our lives together. That saved us both over the years.

It is hard for Clare to do this without her brother but she knows it's best for him and that is all that matters to her - doing what is best for Patrick. When he was young and they were all figuring out how to handle his autism, Clare would defend his behaviors to other. She would tell kids, "My brother is artistic" as though that would explain everything. (That was particularly amusing since her dad, my brother in law Channing, is an artist.)

Even though Patrick cannot be at the wedding in person, he is part of the ceremony.  Clare is having her cousin Will stand in for Patrick as a groomsman. Will and Patrick are about the same age and he and Clare have always been close, so it's perfect. Also, the groom and his men are all wearing the little puzzle piece for autism awareness in lieu of a boutonniere. I think that is just a perfect tribute to Patrick.

April is autism awareness month. We will all be aware as we celebrate today, just as we have been for 30 years.

Maggie and Patrick one Thanksgiving many years ago.