Halloween - well that was our favorite holiday. We always went out together. Every year. From the time we were little kids going out with our parents - until the time when I was old enough to take us all out alone. We'd spend months deciding what we were going to be. As time passed, Marcus' costume had to be altered to fit over his bulky wheelchair. He always wanted to be something "normal". He didn't want to incorporate the chair. He wanted to be himself - just like all the other kids. One year a vampire. Another a super hero....more
When my nephew, my sister's youngest boy, was diagnosed with Duchenne's Muscular Dystrophy, I started paying attention to Jerry Lewis and his 'kids.' This was, of course, after wailing and weeping and rending my garments. I think that it might be the third stage of terminal illness/disability grief: looking for famous examples of said illness/disability and/or advocacy thereof. I looked to Jerry, because his telethons were all I knew of muscular dystrophy.That was a mistake....more
It is difficult to write about the acclaimed, award winning documentary "Darius Goes West" without using phrases that have become cliche or superlatives that are tossed about casually and excessively these days. That said, I will tell you that this is a film that is deeply moving and offers profound, life changing lessons.
The film was made by novice film makers on a low budget and it shows. It is not the most technically sophisticated piece of movie making you will ever see but I am certain that it is a piece of art that will remain with me.
Ah yes, an even deeper foray into the life of yours truly. You see, my 8 year old son has Muscular Dystrophy. This isn't usually a conversation starter for me but this is a blog, and it seems that as a blogger, it's my duty to peel back the layers and expose these bits of my life. So there you have it. My 8 year old son has Muscular Dystrophy. Infantile Onset Facioscalpialhumoral Muscular Dystrophy actually.