Tuesday, January 15, 2013

Get this.

People have all sorts of reactions to Maggie and to our life with Maggie.  Most people cannot grasp our life at all. That's fine. It's our life, not theirs. We don't expect anyone to completely understand our situation. Everybody has something in their life that others don't understand. In our case, though, our differences are very obvious and visible and involve a larger than life personality like Maggie, so we have come to expect
various reactions.

Some "get it" and and meet us where we are. We treasure those people, but they are very few in number.

Some are strangers with a kind word to say or strangers with a bizarre comment who, for some reason, find no problem sharing their insights with me. 99% of the time those insights have absolutely no bearing on our life. Those comments are generally harmless and worth it for either the humor we find or, in that 1% of the cases, the connections we do make.

There are those who THINK they "get it", but really don't. Perhaps their cousin's brother in law's nephew has a disability completely different than Maggie's so they think they understand. They offer advice and comments that don't make any sense. These people are mildly irritating, but also harmless and generally well meaning.

A more difficult situation are those who SHOULD "get it" by this time, but still don't. It is tiresome to explain over and over and over again that we have limitations, we are not as free as others in our age group. No, we cannot take Maggie to this place or that, no we cannot come away for the weekend, no she does not want to "just try" some food. They too mean well, but cannot seem to grasp reality. Still, these are generally people we love or need and we learn to overlook the naivete.

The toughest group are those who don't "get it" for a different reason. They may fully understand the limitations and difficulties, but they cannot understand WHY we do it. These are generally people on the fringes of our life. For the most part they don't say anything, but they project a sort of disapproval. These are the people who think Maggie should be in some sort of institution so that we can live our lives. It may be at some point we cannot care for Maggie here, but while we can, we will. And this particular group thinks by doing so we are ruining our lives.

You would think this people are the most distasteful of all to us, and in a way I suppose they are. But instead of anger or resentment, I find myself feeling a little sorry for them.  They see only the burden and none of the joy. They think my life is somehow less because Maggie is part of it when, in fact, it is so much richer because of her. I cannot and would never even try to explain that to them because they are unable to comprehend it. That makes me feel sorry for them.

Don't get me wrong. I would love to be able to travel freely and be a bit more carefree, but I can't. And, what some people will never understand: that is okay. It's a trade off and I got Maggie in the deal, so I don't really feel short changed at all.

Life is more than the places you go. It's the people you meet, the experiences you have, and it's the love you give and receive. And we have a very full life indeed.

Get it?


  1. Oh God, do I get it. I was just having a similar conversation with someone, triggered by the loathsome phrase "get a life"....

  2. I think this is really a huge and important subject. As the population ages and the explosion of autism continues, many more people will find themselves making decisions about the value of caring for incapacitated loved ones, and about self-sacrifice, a term whose connotations have become entirely negative except in the context of warrior virtues.

  3. I worked as a care provider in a group home for severely and profoundly developmentally disabled adults. It was only for a year, because the company was pure evil, and I couldn't sustain coming home from work crying every day, but I would have taken any one them home to live with me full time. Each of their limitations make care a round the clock activity, but they were wonderful charming people, and a delight to be around. It has been three years, and I still think of each of them every day, hoping that they are well and fearing that they are not.


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