Introduction

Dear family and friends,

I am the parent of a boy with Duchenne Muscular Dystrophy.  It took me a while to come to terms with identifying myself this way.  The truth is, if you have a child with an increasingly debilitating disease, your life is defined by how different it is from everyone else's.  It is shaped by bad news, doctor appointments, bad advice, good wishes, shattered dreams, desperate hope, lost time, lost relationships, isolation and general confusion.

This blog isn't about me though, it's about my son, Aaron.  It's not his blog.  This is my attempt to give you a view of what I, and my family, are going through from my perspective.

The title of this blog "A Full Life in Fast-Forward" relates to the frantic drive to give Aaron a life of experiences in the short time that he has.  His prognosis shows that he only has a few more years to experience the world in any real interactive way.  He's now at the age where he's able to appreciate and relate his experiences to the larger world.

This is my son Aaron.  He is a talented designer.  He hopes to become an engineer or an architect.  He is home-schooled because the public school system can't even begin to understand how to support his physical needs, let alone his emotional needs or learning style.  Because he is home-schooled he is not bound to the pace and schedule of the school system.  He is free, but he works hard as you will see.

Aaron's dragon puppet he made for Chinese New Year (Feb 3, 2011)

In this picture you will note that Aaron is about 9 years old, he turns 10 on March 3rd, 2011.  He is sitting in a wheel chair.  He is holding a paper mache dragon that he made entirely himself.  Directions here.  If you followed the link to the  paper mache dragon, you'll also see the lego model he made of himself holding the dragon.  His idea, his design.  You'll see other creations, essays and examples of creativity and long work on his blog.  This is why I call him a designer.

The reason I point this out is because people expect disabled folks to be stupid.  Admit it.  They sometimes are, true, but most aren't.  There are many who are brilliant.  There are many who are brilliant, but hard to understand because their culture is skewed by a very different life experience, one they must overcome or at least endure by being creative in the way the think and feel.  

Six months ago, Aaron wasn't in a wheel chair.  He could freely get in and out of the house, go on errands with us and take care of himself.

Recently though, life became much more difficult...