Expert knowledge, however indispensable, is no substitute for a generous and comprehending outlook upon the human story with all its sadness and with all its unquenchable hope.” -Winston Churchill
We need the geneticists, the physicians, and the therapists but we also need most of all, we need to find meaning and an outlook. If you or your child is one in 50,000- or one in a million, or one in 3 million, the question of why occurs to us all when it comes to rare illness.
How we answer this question is just as important as finding the right care. How we answer this question is central. Heather Klanier, whose daughter has a rare genetic deletion writes in her blog, Star in Her Eye:
“The statistics hang over us. One in fifty-thousand. The why is not embedded in the number. The number is indifferent to the why. The number is a puzzle with the plainest answer of itself. You [or your child] are the one in fifty-thousand. My own practice — however flawed and erratic — involves resting in the mystery. Sitting with the wholeness of risk before it’s divided into fractions. Turning down the mental radio of stories, and sinking into the quiet beneath. In the rare moments when I reach it, the quiet is fat as cumulus clouds. Inside, it contains not a single statistic.” – Heather Klanier
It can be quite a journey to find peace and a positive approach to a situation that you can’t “fix” and that doesn’t seem fair to you or your loved one. Accepting a “chance happening” that ultimately causes pain and that you’d really rather be without, is difficult. You didn’t choose this, and you’re surrounded by people who aren’t subjected to the struggles that you have to deal with every day.
Wrestling with this question is normal; you may find a different answer than others, or you may, like Heather, accept the mystery in a way that doesn’t demand an explanation.
Featured image source: Grief Healing