MARCH-MIDDLE

“For now, it is March-middle, and for now, the world falls apart then together seemingly every moment of every day.”

- Ella Frances Sanders

Today my head is spinning and here are some of the things going through it:

The good days are a gift that I don’t want to squander, and often refuse to fill them with anything that isn’t absolutely essential.

But the bad days are a reminder of how far we still have to go, and my brain floods with long lists: of things I should do, and read, and research, of the million possibilities of answers that exist and what would help and what my next step should be. But bad days require every ounce of time and energy I can gather just to survive them. On bad days I feel defeated.

Time has been an impossible thing to make sense of, wild and willful; the tough moments in particular seem to drag out, last forever, while entire months have slipped past in the blink of an eye. And no amount of bargaining can tame it.

Prioritizing what’s best for him is easy. But it also takes a toll on me. How does a mother possibly care for herself too, without guilt?

A GOOD DAY

I firmly believe that the good moments are worth marking, noting, remembering, holding onto in whatever way we can. This one came on a warm February day on the Georgia coast. Except for my cold toes, I could have stood there forever.

the de-evolution of joy

These days I think of time as split, as if there is a line somewhere that separates life before and life after. At the time the change felt sudden and jarring, like I was thrown from one reality headlong into another with no warning. But there is no line, really; just a blur of time in which everything turned upside down.

When I stumble across old pictures of him, carefree and smiling, I suddenly find a lump in my throat. Sometimes I catch my breath and struggle to hold back tears. Though he’s always had an intensity about him, his default was - unfailingly - joy; laughter and grins and a silly side the likes of which I’d never seen. He sang. He played. He was by any measure a happy kid. My heart aches to have that back.

As things got bad the best I could do to describe it was to say that it was like watching him fade away into nothing; my once exuberant little boy a frail and hollow shell. The hardest part has been knowing that he’s still in there, but not knowing how to get to him, how to bring him back. Where did he go? I pore through photographs begging them for answers.

new years day

It is the first day of the new year and mostly I have looked forward to it with a mix of dread and indifference. But I spend a small piece of it in the woods with my boys. It’s not too cold though the woods are empty. Just us, and the birds. My youngest laughs more than he has in many, many months. His playfulness is like a balm to me. I need this moment to last, to be able to come back to it. I raise my camera but there is a shift. He turns his head and protests. Instead I take a picture of his brother lying on a bench pretending to be a corpse.