September 8, 2009

the little things

When you first have a baby with Down syndrome, you read any information you can get your hands on.  In those first weeks there was so much information - heart defects, hearing loss, vision problems, developmental delays….  It goes on and on.  If you are lucky, you find a person or two who has been there and can be a huge supporter.

As time goes on and you meet more and more people, you learn the little things that they don’t put in books.  Kids with Ds often like to wander off and parents find they need to lock the kids in the house with them.  They aren’t potty trained, on average, until age 5. Sippy cups promote tongue thrust, so you have to use a straw cup.

Next, I learned about the physical characteristics that I ended up loving.  My buddy has the most beautiful brushfield spots in his eyes and this adorable space between his big toe and the one next to it.  So far his flat nose is the cutest button nose ever.

As my buddy grows, I wonder what other things will take me by surprise.   I also wonder what milestones will hit below the belt.  Will he be able to feed himself cake on his first birthday?  Will I ever get a photo of him without his tongue sticking out?  When will he be able to say “Mama”?

And then there are all those fears about the future.  I don’t want kids to make fun of him.  I don’t want life to be harder on monkey bear having to defend her brother.  What will he be able to accomplish in his adult life?  Will there ever be a day when I don’t think about Ds?

For now, I take each little victory and accomplishment and savor them.  And those hugs… forget about it.  Plus, who cares if that huge smile only has one tooth!

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