Monday, June 9, 2008

I don't know how you do it

The one thing that people say to me more than any other when they find out that I have a child with Autism is "I don't know how you do it." This has always puzzled me.
I have (since I had children of my own) looked at others with more children than I and said the very same words. I have looked at single moms going to work every day for hours and then coming home to more hours of work and thought " I could never!" I have had friends and acquaintences lose a spouse and be left with very small children and all the pain that situation brings and thought "I can't even imagine." But I have never, ever, stepped back and looked back on my own situation and thought "I can't possibly do this."
For a long time every time I heard the words "I don't know how you do it" come out of another's mouth I was offended. Often I took it to mean that that they thought that I had lost the lottery. I had somehow gotten damaged goods. Most of the time the pitying look that came along with the statement sent me off to a corner somewhere, licking my wounds and wishing that I had never shared this piece of my life with this person. In those moments I felt as though I had betrayed Charlie. I felt that I had shared a piece of her precious history with someone who had missed the point completely.
As time has gone on I have gotten used to the response and can even tell when the person is forming the phrase in their head before I even get the full sentence out of my mouth. "My daughter has Autism." I see the shock and the grasping for the right words. I see the fear. Yes, the fear. The fear that somehow this could touch them in a way tfor which they are unprepared. The fear that knowing someone who has Autism or someone who loves a child with Autism can somehow reach out and wrap it's evil arms around them and steal all that they hold dear. Sometimes, I feel as though I need to present a disclaimer before I actually make the statement. "Prepare yourself now. I am about to tell you something that has been known to make grown men weep and the strongest of women faint." But now I realize that people have no idea what to say. There is no "right" answer. And in answering out of their fear and shock they say words that they don't really mean.
I think that the strangest part of the comment to me is that it somehow implies that I have a choice in the matter. A choice as to whether or not I love my child fully. A choice as to whether or not I give her everything that I have to give and then a bit more. A choice to be fully present in her life or to keep her at arm's length. Let me share with you the complelte and whole truth of my reality with BOTH my girls: I would not have missed this ride for the world. I have learned more about my own strength and weaknesses than I ever wanted to know. I have learned more about the committment made from one sister to another - even when the other sister is still just a baby herself. And I have learned more about love than I ever could have hoped or dreamed possible. And not movie love, not the kind that wraps itself up in a neat and tidy package at the end of two hours and a bucket of popcorn. But the kind of love that NEVER gives up, the the kind of love that can take any beating and still come back for more. Begs for more in fact.
Now if God were to take me back to the beginning, to the days of sweet smelling newborns and complete exhaustion, and He told me that I could make the choice - Autism or no - I can't tell you that I would make the right choice. That's why I am here to say now that I am so glad that He made the choice for me. Because, my goodness, if I had missed this child, her sister with her and all the pain and joy that has come from caring for, loving and knowing her the way I do, I would have missed everything.

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