duchennes muscular dystrophy

Stories Hard To Tell

March 2, 2011

For all my talk of the world-changing power of sharing our stories, there are some stories that I have trouble sharing, because they’re too hard to write about, or because I worry about the impact of sharing them, or because they’re not my stories, and even if I have permission to share someone else’s story – like, say, Tanner’s – sharing someone else’s story is always an enterprise that pitches me into a state of anxiety. What if I tell it wrong? What if I don’t do it justice? What if it provokes the kind of ugly reaction that I’m comfortable receiving on my own behalf but which sends me into emotional turmoil when it involves others, and especially those whom I love? Keep reading…

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A Real Boy

July 27, 2010

Every visit to the doctor, now, brings bad news. In the early days, there were reassurances and messages of hope – some boys make it out of their teens, there are ways to slow the deterioration of his muscles, he might stay mobile for a long time, he might still get to enjoy some of [...]

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A Little Heart Bursting Never Hurt Anyone

July 9, 2010

Have I hollered enough about the joyfultastic awesomeness that is this? Have you heard just about enough about tutus and New York and walking and skipping and running and wishes and dreams and carpe-ing the diem? Do you have no soul? Then you might want to skip this post. I hope that you won’t, but [...]

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Clockwatching, Redux

March 24, 2010

Today, Tanner goes to the doctor. This is, in itself, nothing new – Tanner sees a lot of doctors – but today, he’s seeing the doctor so that they can start fumbling toward answers to difficult questions concerning when and how and how long. How long until his food needs to blended? Until he needs [...]

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