The Biggest Fear

No one wants to outlive their children.  Nobody normal, anyway.  But I have to tell you a secret about parents of special-needs children.

We want to live forever.

We always vow to take care of our children for "as long as we can" or "as long as we are able". 

We have to live forever.  What will happen to them if we don't?

It's the biggest fear we have:  That something will happen to us, leaving our children in the hands of people who may not understand them as well as we can or know how to take care of them or advocate for them, even after they've reached adulthood.

I really wish this was different.  I wish that the world was made differently, that we, as a human race, understood that we are all born here, that we all do have a finite amount of time to get it right, and that we do much better if our hands are held together.  Can you imagine what it would be like to know that if something happened to you, an entire village would rise up to take care of the loved ones you left behind?  It's a nice story.



It's like the story of the spoons.  Have you heard this?  In the story, a group of people are invited to a fine banquet.  The food is sumptuous and delicious and plentiful.  But the only utensils they are given are spoons with handles so long that they cannot possibly eat with them.  The only way to enjoy this feast and feel full is to use your spoon and feed someone else, and hope that someone does the same for you.

Unfortunately, most humans aren't made this way. 

I know that I won't live forever.  The best I can do is practice yoga and buy a bag of baby spinach on a regular basis and hope for the best.