a mother’s rare disease memoir
On shelves April 2020, from Dundurn Press.
Available for pre-order now on Amazon:
Epilogue: After the After
An epilogue is supposed to provide a comforting resolution at the end of a book; it’s the place where the author ties everything up in a tidy bow and makes sense of it all. But if I’d learned anything in the After, it was that nothing really ends when you’re the parent of a chronically ill child, not once a dire diagnosis has split your life into the placid Before and the anxious, acute agony of the After.
We’re living in the After the After now and at time of writing it is almost exactly ten years since the day I walked Aaron to his first brain scan. He has had dozens of MRI’s since then in so many different hospitals, and still the tumour remains. So does the treatment, the vigilance and the reality that he cannot live with any peace of mind, or perhaps physical comfort, without frequent visits to multiple doctors, that he must secure funding for the tumour suppressant medication administered by a specially trained nurse every three weeks. Each sore muscle or strange skin pigmentation, a head ache or a sleepless night could be something. But then there are the bigger worries, that ones we still don’t share with one another, as if saying them out loud might support the likelihood of disaster, feed the monster that lays in wait.
There hasn’t been time or opportunity to analyze everything that’s happened. I’ve barely taken my eye off the horizon long enough to cast my gaze back over my shoulder to see the map that I’d made. I naively believed we’d come up with a method for living with the spectre of Aaron’s disease, some way of being that included an awareness of how differently it might have all turned out, and a collective loathing of the uninvited houseguest that leaves sodden towels on the bathroom floor. There has been no reward of a concise definition of our own forever to lead us out of the most frightening years. We have only the life we’ve sacrificed for, our present, the us we are now.