The Ghost of Pain

Not too often, but every once in a while, and it happens when Wil is doing something active like playing basketball or fishing, a transparent form of Wil superimposes himself over the real Wil.

The transparent Wil moves and plays in perfect time with the real Wil. The only difference is the transparent Wil’s limbs move fluidly, and are slightly longer and lither; his eyelids rounder, his ears higher, his hair wavier.

Just like a ghost from the past, the transparent Wil never announces his arrival. I’m both struck with shock and familiarity when he shows up.

I used to question myself when these transparent visions would appear. Deep down I know my acceptance of Wil’s diagnosis. I took the very steps to full acceptance myself, because no one can take those steps for you. You can be supported, lifted up, and cheered on, but it is you who must cross that very finish line on your own two feet.

I crossed the acceptance finish line long ago. So why do these visions appear? They don’t come often, but shouldn’t they have long faded into the past?

But that’s not the way it works. When Wil was a baby, and I was on my journey to acceptance, I would stare at his almond shaped eyes, cup my hand over his short-stubby fingers, and find myself falling in love with all the features that initially terrified me. The features that are considered “markers” for Down syndrome.

But even with acceptance, sometimes the brain just wonders. When I see these superimposed visions, they are not filled with longing. They are not filled with pain. They feel more like observations. And that is why I can accept the visions too.

I’ve learned so much with this acceptance process. Acceptance always starts with a deep pain. A pain surrounding something you did not expect. A pain that wants to make a home in the pit of your belly and never leave.

Sometimes, though, you have to sit with that pain in your belly for a while. Let it burn down deep. Let it light it’s fire until it’s too painful for you to let it stay. And there will be so many well-meaning people saying to call out for help, and though you desperately need help, you don’t exactly know what kind of help you need. So you have to sit with it. Feel it. Assess it. Journal it. Hold a friend’s hand while feeling the fire. Share what the fire feels like. Don’t paste over it – don’t try to make it look prettier than it is. Don’t stuff it down, don’t cover it. It will burn its way back up with a fury. Just don’t sit with it too long. Or the pain will become part of you. It will hurt, but it will be habit. And you owe yourself more than that. When we find our way out of the fire, it’s never in the same place where it was set.

When I see the transparent Wil, he doesn’t threaten my acceptance. Because I sat with him when he was a fireball of pain. I felt my loss for him. I held my friends’ hands and talked about him. I made peace with him. And I let him go.

I’m not sure our pains ever leave, but how we look at our pain is what changes. Now when I see transparent Wil, he is a reminder of how far I have come on this journey. How I can sit with the pain. How I can let it go, even when it comes back.

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