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235 Wrapping Sometimes, from my upstairs bedroom, at any given time of day, I can still hear Michael talking to himself. I remember how I used to run downstairs and glue my ear to his closed door, worried that something was terribly wrong with this scenario. I recall how I was informed that nothing was wrong and that some people with Down syndrome just have a tendency to let inside voices escape outside more often than typical folks might. Now, when I hear Michael having a chat with himself, I don’t run downstairs anymore. I want to, but I don’t. Just because Michael lets his private thoughts slip into the ethers for me to hear doesn’t mean I should invade his personal space and listen. He’s under enough close, constant scrutiny as it is. I am not entitled to any of my kids’ clandestine thoughts. They will share with me what they wish. Michael included. I’m not sure I ever had a clear entitlement to write this story of raising Michael. I did it anyway, convincing myself that it was necessary . I wanted to show the world how wonderful Michael is. I wanted to show how wonderful—how resplendently complicated—he has made my life. Now, however, it has become plain that it is time to wrap up this story, not because it has ended, but rather because I can no longer justify some carte blanche privilege to chronicle Michael’s life. He is no longer a little boy. He is in a committed relationship, and he is working hard to be included in the workforce. He has a calendar chock full of 236 ♦ Life with a Superhero recreation activities in the community and responsibilities at home. His life sounds a lot like his siblings’ lives, and I would not write about the foibles and exaltations of his siblings’ adult existence. That’s personal. It’s not for me to interpret or expose. The same must apply to Michael. Jim and I have entered what we call the “popcorn phase” of parenting . We are still there, but we are not necessarily always in the picture. Instead, we have popped a humongous, bottomless bowl of buttery popcorn, plopped on a big old sofa, and we are enjoying watching the show continue, to unfold without our constant, tangible presence. Of course, we both carry an almost too-heavy-to-handle safety net in our back pockets so we can catch any child who may errantly fall or hit hard times or need an ear to bend. We haven’t disappeared. We still get late night phone calls asking for advice and we still all regularly get together to share meals, company, and holidays. We are, by default, more visible in Michael’s life, but even there, we are being incrementally phased out. Recently I was told by a gentleman—a fine human being, prolific writer, and gifted teacher—that the main character in this story is not Michael. Rather, I was told, the main character is me. At first, I balked at this. Why would I want to write about myself? I’m boring and pedestrian . The exigency for writing this came not from anything remarkable about me, but, instead, from the extraordinary lives of all my children and my husband, and the gifts Michael has brought us all. Without those people, without Michael, there would be no story. On second thought, I realized that maybe this is partly about me. Maybe this story is about what has become of the me formed long ago while, as a small child, I read about Dale Evans’ angel; or while I sullenly witnessed bullies taunt, and adults ignore, kids with special needs in the hallways of my schools; or while I taught life skills classes at a residential facility; or while I studied to become a Recreational Therapist in Boulder, Colorado. Maybe this story is about the grownup me who still dreams of a world where everyone finds and is extended joy. Maybe this is a story about finally understanding how I define feeling whole: Michael came, and I got sick, and along the way Wrapping ♦ 237 of taking care of him and his siblings and getting well, I realized that I am silly and unusual, that I know how to love completely, and that I matter very much to my family because I can and do help their lives be good. Goofy, but good. Maybe that’s not...


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MARC Record
Launched on MUSE
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