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Axel, 2013

Axel had a great day and night, and is back to sleeping and eating as he usually does. He is pretty thrilled to be out of his baby cage and bandages. This morning we are dosed up on coffee and Will is practicing his rendition of this song while the boy squeaks along in the background.

I think we are going to have a lot of days like this, where we alternate between being amazed by how tough Axel is and how lucky we feel.

Both of us have kind of been holding our breath for a while, knowing Axel had this surgery ahead of him, and it's just a tremendous sense of relief to see him doing so well. It's also still sinking in that he actually had a hole in his skull.

On the scale of things our surgeon does every day, this is actually fairly minor (hard to believe.) But it's been a long road from the first moment we had an inkling that something might be wrong.

Every time someone asked about his bump, it stopped me in my tracks. Not because I was self-conscious about it, but because the casual question exposed how much we didn't know. I'd usually say: "It's fine, it's entirely superficial and a very minor procedure," but at the same time I'd be going through hundreds of thoughts and what ifs.

The mundane details of day-to-day parenting are enough to manage, so sometimes I'd all but forget about it. And then we'd do something like take him to a swimming class and you'd sense people had questions the weren't asking...or I'd go down the rabbit hole and find myself up late at night googling "encephalocele." It's a lot, even if Axel was never aware of it and was busy being a happy baby.

Feeling very relieved today as for a while I couldn't really see past surgery day.