Sunday, March 17, 2013

Good Night Sweet Prince...

     I'm guessing that Jared has not had a dream for a couple of years. I'm guessing, too, that his body has not repaired; his mind has not been sharpened.  I'm guessing this because we recently found out that Jared has sleep apnea. Again, one more thing that happens to our children, one more thing they must face with grace, one more thing that makes it just a bit more of a nuisance to live, to exist day to day.  But, I have to say, this is something that can be fixed. When you have a child with special health concerns, it is a relief when the next thing is something that can indeed be fixed, not with surgery, but with a shoebox sized device, a mask, and a long tube, a tube that will help my son breathe when his body gets in the way of his air. And the mask is not huge, thank goodness. Jared is worried about it, the mask, the machine, the stigma, that now he seems to get.  The doctor told him it is private, this machine, that his door can close and that it is not something we need to discuss or tell anyone. Funny, Jared seems weary too, sometimes, sick of sharing with the world what makes him different. He gets it now. He looks to me for reassurance. "No one will see it, Jared; no one will know," I mimic the dr. (OK, except all of you who read this, but please don't say anything to Jared...)  "But what about when I get married? What then?" "Then it is that last thing you do at night before you go to sleep, the very last thing." I tell him this, but I'm selfishly angry too. Same old song: our kids have Down Syndrome, so let's give them a bunch of things to deal with; let's make it a whole package, that continues to surprise them as they grow.  But here's the thing: out kids are so damn resilient that they deal with the medications, the surgeries, the allergies, the...I could go on and on. They not only deal, but they wake up each day and go out into the world, ready to live, with a smile on their face and an eagerness to connect with everyone with whom they come into contact.
     So, when you see an individual this week with Down Syndrome, this week that will celebrate International Down Syndrome Awareness Day on Thursday, the 21st, take a minute to understand what it takes for some of these kids to get out of bed every day and face challenges every day and touch lives every day and love every day. And use that minute to balance yourself, to think about how we all might go through our days and rather than dragging our baggage, lifting it up high above our heads as if to tell the world, I got this; I can handle this, and I can see goodness over and over again.
    And tonight, when Jared and I go to the sleep center at the hospital and he gets his machine, my heart will soar because my child, my very tired child will finally rest.

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