duchennes muscular dystrophy

I don’t write much about Tanner these days. Partly because writing about Tanner is always hard, and I have limited bandwidth for hard, and I know that this is selfish, to avoid the hard topics – I also avoid writing about the struggles of the household, and the worries of the family, and these are minor topics in comparison – but my heart, you know: it sometimes feels as though it can only withstand so much. And then there’s this: Tanner is becoming more and more the owner of his own story, and more and more concerned to keep it his own, for as long as he has it. Even as his body fails, his mind and spirit move forward – now, into adolescence, with all of its exquisite sensitivities and anxieties – and you know how you didn’t want anyone to even look at you when you were twelve? That.

He just wants to be normal. But that’s complicated. And talking about those complications – and all the things that go with those complications, whether they be related to the conditions of his disability, his prognosis, the social issues that he faces (don’t get me started on the bullying thing again) – is important, because he’s not the only boy whose life has been made complicated by DMD. He’s not the only child whose life has been made complicated by disability and terminal illness. His is not the only family to struggle. So I push his story forward, again. And again and again and again. Exercising my own heart as a muscle – all of hearts, as muscles – requires it.

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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 [...]

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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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