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When My Son Says He Wishes He Has Down Syndrome Like His Brother

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There’s so much I don’t know about everything.

Each year I learn a little more as I go — about life generally, about who I am, about my children, about living with Down syndrome. I can navigate pretty well through not knowing everything, but there’s something I haven’t figured out yet. When my youngest typical child looks at his older brother with Down syndrome and says he wants to have his life, I’m stumped. How do I respond to that?

My youngest is 10 years old, and for him, the longterm is the upcoming weekend. Trying to explain some of the longterm implications for Davis, who has Down syndrome, doesn’t work.  And I walk the fine line of making Davis’s life plan sound something less than wonderful, as I hope it will be.  I know Carter wishes he carried fewer responsibilities and less work; he envies when he thinks about Davis. It still breaks my heart to hear him wish he has Down syndrome. I’ve certainly experienced the unique joys that come to us as a family with a child with special needs, but there’s never a day I don’t also see a long line of doors that are closed to Davis because of his diagnosis. When I think about Carter, those same doors seem to be wide open.

As shining as all of these wonderful moments we write about are, there’s also the extra weight that we carry on the journey. In our family, this confusion of Carter not embracing all of his possibilities contributes to that weight.

But sometimes I also wonder if Carter is on to something. Do I lack an answer for Carter because there’s some truth to what he says? That a simpler life, free of the demands and worries for the most part, is something to be envied? Maybe I can use that line of thought to inspire me to simplify in this new year. If simplicity is part of what is to be envied, how can I bring that about more in my own life across these next 12 months? So, if I do that, add this to the long list of lessons I’ve learned from my children.


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Originally published: January 2, 2015
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