Sam Today, I received some sad news..
Sam, the son of a friend, passed away this morning from complications of Myotubular Myopathy, the disease that affects Javad...
You can see from his picture that he was cute as a button. His little body just gave out..fighting for many months in this earthly place. Sam represents many on our group, his life, his death. It comes suddenly without warning and the air is sucked out of the room.
As a parent of a child with a life threatening disease, there is a certain amount of guilt whenever a child dies. You feel the burden of sadness for the family, so deep that it is like someone you knew and held passed away. Another wave of relief passes over you, that it was not your child.
Words cannot begin to describe the guilt in this paradoxical situation. Sam is the second child to pass away this week. Tom passed away earlier this week. He was almost four. Sam was not quite 2.
Death is unfair, it takes some too soon. There are no answers to the many questions that are in the air. I have no answers...All I think and hope is that Sam and Tom are running free. Standing tall, holding hands, running through the grass, feeling it on their feet, their lungs healthy and strong, muscles healthy and strong.
Tom
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