I had a recent text message exchange with my sister that included her saying "I'm sorry it hurt. I was trying to be light and funny. I missed terribly." And my reply, "It's ok. Everything hurts lately. I know you meant it in a loving way. Some days, I'm just all raw nerve endings. Not a fun way to be, so I have to do better. And please do share happy news; don't think I don't want to hear about that. It's just that because we miss out on so much--or it always comes with abnormal stress and worry--that highlight reel stuff is kind of brutal." Followed, of course, by an emoji of a blowing heart.
A couple of things strike me. One is that in spite of the fact that my sister really did miss the mark, she owned it. "I missed terribly." That kind of taking responsibility for unintended hurt is moving and incredibly powerful. It matters when someone is in pain that she can be seen and heard. So deep gratitude to my sister for that. And for the love that undergirds it. The other thing that strikes me is the daily challenge not to let the struggles and sometime anguish of my parenting journey numb me to being able to take in and cherish the joyous moments in the lives of those I love. Or even in my own life.
I've often said--and I know other parents of kids with extraordinary needs would agree--that unless you're walking this walk, you just don't get it. You can't get it. There is no intellectual exercise that will allow you to tap into my world, to access my experiences in any meaningful way. You can't hand off anguish, bone-deep fear, or terror to people who haven't experienced it directly. It's why victims of torture, of genocide, and of all manner of other atrocities in some ways never escape their suffering. They might heal in important ways, but there will always be a gap--an emotional, experiential moat, of sorts--between them and everyone else who has not had that experience. I can try to understand that kind of suffering, but I cannot get inside it. I cannot feel it, know it, understand it from the inside out. I can only be a sympathetic person on the outside, looking in.
There are things I will never say or write about regarding my parenting journey. My children's deepest stories and struggles are not mine to tell. Their experience resides within them, and though I bear the effects of their struggles (as they bear the effects of mine), what each of us experiences directly is not equal to what each of us experiences indirectly, in relation to one another. The person pricked feels that pain differently from the person who tries to help the person in pain. That's just a fact. It doesn't mean that secondary suffering isn't real; it's just that it's a degree (or more) removed from direct suffering. And when you move outside the protective bubble of a family, out into the world in which social expectations demand that you keep certain things under wraps, the distance grows, the silence deepens, the weight feels exponentially heavier. You put on your game face and do what you have to do. You walk through the world with a smile on. You mouth words that outwardly demonstrate that you are fully engaged, connected to the normalcy around you. Or you walk without seeing, refusing to notice the people staring at your child as if s/he's a freak, refusing to let their fear or disgust penetrate. But of course that's a lie. Because all those exposed nerve endings? They're precisely what makes you hyper-sensitive to every look, to every turned head, to every sign that what is off kilter in your world is being seen. And judged. And so are you.
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