The moments always take me by surprise. It happened the other week, when Sabrina and I went to see Alexander & The Horrible, Terrible, No Good Very Bad Day. The movie's pretty funny, and we laughed a lot. At the end, Alexander has a birthday party and his parents wish him a happy twelfth birthday. Suddenly, tears started rolling down my face. Because Max is going to be 12 in a couple of months, and it was one of those moments when I thought, I wonder what he'd be like at 12 if he hadn't had the stroke. As I wrote on Facebook, "It's that total disconnect between loving the kid you have—the Wonderful, Awesome, All Good, Very Great Kid—and wondering about the kid who never was."
Birthdays have a way of bringing out the sadness. Last year, before Max turned 11, I found an old video from his birth, wrestled with the residual grief over what happened to him and accepted that it will probably always be part of me. The trauma I went through when he was born that I occasionally relive is no reflection of my love for him.
Max, he is no trauma. Just the opposite: He brings me a whole lot of happiness. Which is exactly why it throws me when my mind considers a different version of Max. It seems incongruous to love a child so fiercely and still imagine what other child he could have been. Not once have I ever imagined having a different Sabrina.
Also disconcerting: I am so proud of the progress Max has made and what he has achieved. I have learned to not judge him against his peers' development because he is Max, a kid who does things on his own timeline. And yet, I end up comparing him to some apparition of a child he could have been.
One minute, you're fine. And the next, a couple of kids walking home from school cross the street in front of your car and suddenly your brain is spiraling into that place where the what-ifs and the would-have-beens lurk. I'll wonder what Max would be like if he was a kid who could walk home from school with a friend. Or if his speech was clear. Or what activities or sports he might be into if he didn't have cerebral palsy. I have never actually heard that ghost child speak in my head, but I have envisioned him dunking basketballs into the hoop outside a neighbor's house.
It seems like a lot of special needs parents are haunted by these thoughts, as evidenced by the Facebook comments. Maria spoke of watching a niece, the same age as her 9-year-old son with special needs, buy chapter books at a book fair. "I immediately thought of James," she said. "I had picked out a simple Lego leveled reader for him. Once again, I was in my car crying." For some moms, visions of the other children come to them at night: "I will dream Sebastian walks into my room or says 'I love you' with a speaking voice and words he doesn't have," said my friend Kara.
The ghost never lingers long. I feel a little drained once it's gone, but then I get it together. I know the drill. Like the upset that I get when I think back to the NICU, this also has to do with latent grief. A part of me still mourns the child I expected, even as I worship the child that I got. This isn't about Max—it's about me.
Perhaps the passage of time will exorcise that ghost for good...or not. Maybe it will always be one of those special needs parenting things. Maybe having aired this will help. Maybe one day Max will see me having a moment, slap me upside the head and type out on his iPad, "Get over it, Mom!"
What I do know is that coming home, giving your child a hug and feeling the warmth and solidity of his body next to yours is just what you need to return your head and heart to reality.