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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