Thread by @AdyBarkan

The worst part of my ALS, by far, is how it constrains my ability to be the father Carl deserves, the father I want to be.

One hundred times every day, I despair at my inability to tickle and chase him, to help him build towers and train tracks, to bellow and headbang alongside him, to make messes together and then clean them up. . . .

to read stories and tell jokes, to comfort him in the middle of the night, and to scold him when he dumps his dinner plate for the fifth evening in a row.

And yet we still manage to love one another.

Yesterday when I went to daycare to pick him up, Carl, unprompted, climbed up over the arm of my wheelchair and into my lap.

He wrapped his arms tight around my neck and hugged me, and kept hugging me, and kept hugging me.

“That was the best hug I’ve ever had,” I told him when he was done, trying more than anything to sear it into my mind’s eye.

Because when the daily grind of living a nearly paralyzed life becomes too much, when I am exhausted and depressed and hopeless, I want to return to that hug. I want to imagine that there are similar hugs in my future.

That’s also the only way, I think, for all of us to persevere through the atrocities and the hate and the lies.

We have to hold on to the precious beauty, to the moments of triumph, and fight in the hope that there are more victories to come, more beauty and love in our future.