Saturday, October 30, 2010


It depends on what the meaning of the word “is” is?

-William Jefferson Clinton

One of the most difficult questions we are asked about our little man and his current condition is: How is he doing? And the real answer is: it depends on what you mean.

The short answer is: He is doing well. As a parent, I guess the two things I want most for my children are health and happiness. Fortunately, he has both. His condition is not life threatening. It does not shorten his life expectancy. And, most importantly, he is a very, very happy child who admittedly has difficulty trying to coexist in a confusing world full of people who see and experience things differently than he does. The challenge is in balancing what the world expects of a child of his age, against those things which bring him great happiness.

The long answer is: There are really good days and really bad days. And much like Ms. Gump’s box of chocolates, we really never know what we are going to get.

On the best of days, we see a happy, engaging, effervescent, intelligent and unique little boy who is inquisitive and absorbs and comprehends vast amounts of information beyond his years. On those days we know that he will be a spectacular, independent and successful young adult.

On the worst of days, we see a frustrated, removed, uncomfortable and challenged little boy, struggling with unknown physical and mental complexities, who can not find simple words to communicate his basic needs. On those days, we fear what will happen to him when he no longer has his parents to intervene and translate life for him. I must admit, that fear can be paralyzing. (Note to self: remember to write about the two blessings that are his typical siblings).

Fortunately, those thoughts are few. We are generally able to take each day as it comes. And today, as I sit here envisioning this sweet little boy, wrapped in the arms of his two wonderful brothers, with a smile ear to ear, living in the moment, I know there is a lesson for me too:

It really is all good.

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