My son’s first Christmas, Santa visited the NICU and handed out teddy bears. My parents were in town, a visit planned months earlier when we felt certain Evan would be home by Thanksgiving. Instead, they witnessed Evan’s third and final eye surgery, and the conversation afterwards with the retinologist. “I’m sorry,” she said. “I did everything I could.”
That year, I couldn’t bring myself to put up a tree. Instead, I sat on the couch and told a friend, “I know it would make me feel better to have a tree. But I just can’t.”
The next Christmas, none of us quite knew how to make a new life during the holiday season, and so we played at the old. I made myself put up the tree. And then the gifts came. Friends and family sent toys my son could not see, hold, or use. Each gift addressed to him became my daughter’s instead. I never expected that every present might be a harbinger of how much our lives had changed. Each discarded toy was further proof of what my son would never do: roll a truck across the floor, turn the pages of a book.
We spent our third Christmas in a new home, the first one we had owned after years of renting, a small house with a lovely view of the mountains across the way. This time, when I went to set up the tree, I saw how I might create new traditions. Where would we put the tree? In the corner, out of reach? By the living room window, where the lights could be visible from the street?
I decorated the house. I told family members to send Evan clothes instead of toys.
Each year, the holidays remind me of what I already know: it’s hard to celebrate, to watch typical kids grow up, while my son remains stalled, progressing (so very slowly), and developing (at his own pace). I acknowledge my son’s achievements every day, but around Thanksgiving and Christmas I also seem to notice his differences the most, when relatives call to ask “What’s Evan into these days?” or “What size is he?” The questions that come each December mark the time that’s passed, and not.
“He’s still the same size,” I’ll say. “He’s a bit taller, but hasn’t gained much weight.” Or, “He’s still into musical toys, maybe a new keyboard? I wish I could be more help, but honestly, not much has changed. . . .”
If the holidays remind me of how little has changed, they also remind me of how far we’ve come. Early in December, seven years ago, friends hosted a baby shower for me. There was no talk of special needs, no sense of what our lives might become. Instead, one of them mentioned a friend whose son was blind in one eye but who still played football. “He has to look behind him a lot, so he doesn’t get sacked, but he can catch a ball and still score touchdowns, no problem.” Early that December, I still thought I might have a son who was simply blind in one eye. And a future footballer. No problem.
Just a few weeks later, by Christmas, that image had become a distant memory. Instead, I saw my parents off at the airport in utter disorientation. This was Christmas? A son in the hospital and all this cheer? Each moment became a marker of reasons not to feel joy.
But that second year, and the third, in our new house, the holidays came more easily. I bought lights and made ornaments for Evan’s teachers. I forgot the first Christmas, the bad news. I forgot I ever hoped my son might play football.
This year, my husband bought Evan a CD, one he slipped into the player with a flourish. “Everyone needs a copy of Christmas With The Chipmunks!” he announced. With the first strains of Alvin singing “Rudolph, the Red-Nosed Reindeer,” Evan dissolved into laughter. So did his older sister, who wanted to know why we hadn’t bought that CD for her when she was younger. For the next forty minutes, they laughed along to the same songs I remember hearing as a small child, the ones that made my own little brother and sister laugh just as hard.
This year, we are mended around the new truths in our lives. There will be gifts under the tree, lights on the house, and The Chipmunks on the CD player. And that, as a friend of mine likes to say, is something to celebrate all by itself.