Jon

The boy is in first grade now (if you can believe that). That makes this his third year of going to school for five full days every week. From the beginning, he's been fine with it.

So it was very odd, this morning, when we dropped him off. We entered the building together, the three of us, said our goodbyes, and then he walked off towards the stairway to his classroom. I turned to go, but before I'd taken my first step, I felt a small person grab me from behind.

The boy was crying, saying that he'd miss me.

I sat on a nearby step and hugged him. I was able to console him, promising to be home tonight in time to read to him in bed and tomorrow night to get home in time for us to play some video games. And then he went his way, and I went mine.

It was moving—it is moving—and literally awesome to be that much to him. I still have trouble sometimes seeing myself as capable, not just of fathering a child, or even raising one, but of being his daddy, with all that implies.

There's another thing, though: parenthood means nothing if not worrying about stuff, and he's never done this before. So maybe he was just unusually tired, sad, or lonely this morning and needed a hug. But now I'm worried that something else may be wrong.

This weekend we spent in Kent, Connecticut, which is near the western edge of the state, about halfway between the northern and southern borders. Friends of ours—parents of one of the boy's classmates—have a weekend place up there, and they invited us to join them for the weekend. We'd been there before, and it's beautiful up there.
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The festival did provide a moment of pure magic, though. We had wandered into a master class taught by Béla Fleck, and someone asked him about the classical music he had arranged for, and played on, nontraditional instruments. For about 90 seconds, I sat transfixed as he played Bach on the banjo.

Then we drove home and got stuck in traffic.

Everyone knows that raising a child is hard. No one talks about the biggest reason why.

As some of you know, Leo was born with a skin condition: a giant congenital melanocytic nevus with satellites. That is, he was born with a single bumpy, hairy, dark brown mole that covered about 80% of his back and about twenty-five other moles, roughly between a dime and a quarter in size, on the rest of his body. Although congenital nevi are merely uncommon, giant ones are rare, estimated to occur only once in every 500,000 births.

Most of the time, the consequences are mostly cosmetic. The condition is associated with a slightly elevated risk throughout his lifetime of melanoma. There can be some other concerns, since, among other things, nevi lack sweat glands, so kids with even larger nevi than Leo's are sometimes at risk for overheating. He still has the satellites, and, like most of us, he gets new, smaller moles from time to time, but the giant nevus was removed from his back in a series of seven operations, the last one on his second birthday. (Happy Birthday, Leo!)

There's a support group for people with nevi and their families. The rarity of the condition makes the group relatively small, and you get to know people. There's a conference in Dallas every two years, and the next one is coming up in July. We're going, and we're taking Leo.

Sometimes, though, this rare condition has an even rarer complication called neurocutaneous melanosis (NCM). In this condition, pigment cells, sometimes cancerous (that is, melanoma), grow on the spinal cord, brain, or both. Symptoms can include seizures, hydrocephalus, and other things. Symptomatic NCM is a bad sign, although it is no longer regarded as an automatic death sentence. If NCM progresses, though, it is inevitably fatal, whether the pigment cells are technically melanoma or not.

Leo had an MRI as soon as he was old enough to tolerate general anesthesia, and it showed no signs of NCM. But not all kids and parents are that lucky. Riley died this afternoon at home, just a few days after his ninth birthday.

I had followed Riley's story, sometimes in tears. I hurt for his parents. The pain is just a little keener, though, because, clean MRI or no, we can't be completely sure that won't happen to Leo, and that we won't be the parents who have to find a way to live during and afterwards.

But then, really, who can?

I gave Leo a chunk of a Carr's Table Water Cracker because he said he wanted to taste it. Once he had the chunk, he looked at it for a moment, and then he dropped it into my glass of water, looked up at me, and exclaimed "goldfish!"

Note to self: The next time Lauren asks if we should have a combination neighborhood block party/Halloween party/birthday party for Leo, the answer is:

"NO! NO! NO!"

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Leo has learned to say "no." In moments of reflection, I recognize that this is a key event in his development as an individual, but it's hard to get much reflecting done when he won't leave the stereo alone.