the power of a floppy tongue…

IMG_5F00_6055One little floppy tongue is the death of a dream.

In a series of dead dreams.

Is that what life is supposed or designed to be like?

Living through a constant stream of dying hopes, holding onto the few that live and create bright spots?

Or is life supposed to be those bright spots with small blemishes scattered throughout?

Maybe it is simply what I focus on that makes the difference?

But the hard part is that it takes so much more energy and determination to focus on the beauty and goodness than on the darkness and despair.  And maybe that is the greatest gift that people with Down Syndrome have been given?

With all of the challenges and difficulties they face, they seem to be able to focus on the goodness and beauty and ignore the spots.  Once again my handicapped son seems to be the one who is closer to the truth than I am.  “Lord, please give me eyes like my son and let me naturally focus on the artistry and beauty around me, rather than the brief moments of disappointment.”

What brings this up today?

Yesterday, for the first time, I noticed that Timothy seems to have the classic Down Syndrome tongue, flopping and sticking out.  It is very subtle, but I have noticed it and it has hurt.

I know I have read in numerous books that kids with DS seem to be relatively unaffected months after birth, then begin displaying more symptoms as time passes.  I know that he is so extraordinary and beautiful that one floppy tongue is not a big deal, but I had hoped and was wrong.

I had prayed that my son would be the exception, the little one with mosaic Downs, only partially affected.

I knew there would be challenges ahead, but had hoped he would be spared some of it.

Instead, seeing his floppy tongue felt like a kick in the gut and a desperate hope for my precious boy gone.

It does not surprise me, and is something I knew was a likely possibility, so why does it hurt so much?  Maybe because I want my son to have one less hurdle to clear … anything.  He has been through so much already, and has been so strong, and I know he has a lifetime of challenges ahead, but maybe this hurts because it is a physical sign of those upcoming challenges?  It has moved from facts in a book to living in my son.  MY son, not someone else’s.  I hurt for him.  And I hurt for myself too.


~ by kuiperactive on May 21, 2014.

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