The moments always take me by surprise. It happened the other week, when my daughter and I went to see Alexander and the Terrible, Horrible, No Good, Very Bad Day. The movie's pretty funny, and Sabrina and I both laughed a lot. At the end, Alexander has a birthday party and his parents wish him a happy 12th birthday. Suddenly, tears started rolling down my face. Because my son, 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 that 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 is excessively wonderful and delicious. He brings me a whole lot of happiness. Which is exactly why it throws me when my mind considers a different version of Max. I'm unhinged not only by the sadness, but by the mental torture. 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.
It comes down to this: 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 him -- it's about me.
Mostly, I don't feel guilty, I just find this deeply unsettling. One minute, you're fine. And the next, a couple of kids walking home from school and laughing cross the street in front of your car and suddenly your heart feels like the wind has been knocked out of it and 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. "Out of nowhere they come. Moments that take you to the depth of your soul," wrote Joyce. Maria spoke of watching a niece, the same age as her 9-year-old son with special needs, buy some 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.
I take solace in the fact that the ghost never lingers long. It's there, it's gone within minutes, I feel a little drained but then I get it together. I know the drill.
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 there will be an app for that. 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.
From: http://www.huffingtonpost.com/ellen-seidman/on-wondering-what-your-kid-would-be-like-without-the-special-needs_b_6040960.html?ncid=fcbklnkushpmg00000037
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