In the blink of an eye, and the wide expanse of a million moments, a decade has gone by since we rushed Hope to the ER on Valentine’s Day 2014.
I don’t think about cancer every day anymore— or even every week. For years I didn’t think that was possible. But the experiences of childhood leukemia shaped our whole family in ways we can longer disentangle from who we were before. Who we might be if it hadn’t happened to us is impossible to imagine.
And then there is Hope. Of course it happened to her more than to the rest of us. And yet she carried us through it. Just as she carries us today.
It’s funny how people assume that because people with intellectual disabilities need certain types of support that they must be a drain on their parents and caregivers. That they must take more than give. In my experience nothing could be further from the truth. Hope sustains me. She makes so much possible. She fills me up every day.
10 years on this side of that life changing moment. I am eternally grateful -- and full of love and wonder and awe that we are living this life together.
*****
Hope is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.
— Emily Dickinson
