Friday morning I went to a funeral for a nine-year-old.

Walking into the church, I shook the dad’s hand and gave the mom a hug. “You took our last family photos,” she said with a sad smile.

“That was a good day,” I said, but there were more people behind me and each of them needed to be seen. I moved along into the pews and sat down.

I had taken their pictures, last summer. And it had been a good day. It was toward the end of July, a sunny day that didn’t have the oppressive heat that August and September can have. There was a nice breeze coming in off the bay, and the paths at the resort where they were staying were shady and quiet. Both parents remarked several times how good a mood he was in that day, how well he was doing. It was hard for me to tell, but I believed them. And right at the end, as I was packing up to leave, the mom gasped and said, “Oh look, he’s smiling!”

I just barely caught the moment. Today the photo was on the back of the program.

They wanted the day to be a celebration, so I tried not to cry too much. But it’s hard to see a nine-year-old die. He had been declining for the whole time we’d known them, victim of a rare genetic disease. By the time I took their pictures last year he couldn’t sit up, hold things, eat, or even make eye contact. Maybe we knew this day was coming. That doesn’t make it any easier.

I could see the pain in the way his mom clutched his stuffed Spider-Man to her chest, in the lay of his dad’s white-gloved hand atop the casket as they walked it down the aisle. But there was determination, too, to remember his life more than his death.

Just after the family entered the room, I noticed a man walk up one of the side aisles carrying a pair of big SLR cameras. I recognized the rig: the standard event photographer’s kit. I wondered to myself, if this were me, if this were my son’s funeral, would I want there to be pictures? Wouldn’t I want the memories I looked at to be the good ones? But then, I’ve lost a lot of people in my life, and I’ve never stopped thinking about their memorials either. What would I give to have a photograph of the day we scattered my grandfather’s ashes into San Francisco Bay, or of the way the synagogue looked at my friend Aaron’s funeral when I was ten—even just to remember clearly what he looked like. I do remember the other parts, the parts that made me smile or laugh. But these ones matter too.

As the ceremony began and the priest’s voice rose and fell in chanting, my mind wandered. I remembered the weight of my great-grandfather’s casket, walking with my dad and his cousins as pallbearers. The old men who walked behind us, stooped and shuffling. The way my grandfather looked in his hospital bed on the day he died. I wanted to be present, aware, paying my respects in the here and now, but perhaps we’re all selfish creatures on some level.

The ceremony was nice. The man who led the congregation in song had a beautiful voice. And then it was over. I left, went to work, and tried to focus on the next thing. One foot after the other.

How do you move on, though? I’ve been to more funerals than I can remember now, and I know I have gotten past the grief, the feeling of life being different, distant. But I don’t really know how it happens. Nor when. Nor when it should.

There are so many things I don’t know. I don’t know how to tell them that I feel for them, that their loss makes my heart heavy, or even if I should; they don’t need to bear the burden of my feelings on top of their own. I don’t know what I can do for them.

What have I ever done? Organized a charity event, once. A few visits, here and there, a few conversations. Donated money to research for a cure for their son’s disease. Took their family pictures. Sent flowers. Showed up at their son’s funeral. A handshake. A hug. Is it enough? How could anything ever be enough?

I don’t know what the right thing to do is, for them, for me, for any of you reading this. I can hold them in my heart, and think about the fact that their son had a life. A hard one, yes, a short one, but a life nonetheless, and one that I can remember had good times, too, and love. He passed peacefully, surrounded by family and friends, which is as good an end as any of us could hope for.

And there’s this: I know that his parents would appreciate it if you took a moment to learn a bit about Tay-Sachs disease, and, if you can, help support the research efforts with a donation. You can also donate directly to the family’s memorial fund here.

Life is short, for all of us. Hug your kids, call your parents, spend time with your friends. Be mindful of the good things you have, and give thanks for them.

Jan, Ferd, Audrey, we love you.