Grief the Gift that Keeps on Giving

Grief the Gift that Keeps on Giving

I have been going to holiday programs for the past 13 years for Evyn and Nicholas. Last week I went to the annual Christmas program at Nicky’s elementary school. I was just one of many proud parents crushed into a room to see the program complete with paper reindeer antlers and kiddy craft decorations and presents for teachers. I always cry a little. At Evyn’s programs I cried the kind of tears you cry at a wedding. At Nicky’s I cry those and tears that sneak up from my stomach, raw emotion old pain.

This is Nicky’s last year at elementary school and this will his first time on stage without an aid. I’m feeling deeply proud that my guy is part of the program. But that’s not the only feeling I’m experiencing. As I watch the other kids file in and perform there is a big excited smile on my face and I’m sad too. It’s in these moments, standing next to all the other kids his age that I cannot deny or minimize his disability. In these moments, standing right next to so many of his peers his difference’s seem so BIG. My mind races. I begin thinking about what he can’t do and I even imagine which child, which personality he might have if he didn’t have autism. Would he be a quiet kid, outgoing, cool, shy or funny. Would he sing loud, or just blend in with the group, would he be a popular kid, would he like sports?. Would he be excited to be in the program, excited to sing all the songs and even maybe nervous before the show began? Would he be like the kid who seems so popular? Then my stomach rolls into a knot and tears explode from my eyes and I’m sad for him, sad for me, I feel ashamed of myself for what I’m thinking. Then I stop, recognizing what is happening (because I have been here so many times) and I give myself a bonk on the head and say “Snap out of It!!”. There is nothing in sadness, but sadness. Focus on all that he does have, all that he can do and stop making up stories. He has a wonderful personality, he is clever and funny and loving. He is strong and he has his legs that got him on the stage and how do I know for sure that he isn’t feeling excited about being in the show. I let my grief go.

It’s been 8 years of shows with Nicky since preschool, and hundreds of hours of playgrounds and party’s and the grief is still not gone. The grief from thinking about how things might have been, things that I just assumed would be a part of my sons life, the loss of what I never really knew the constant death of expectations. It visits me as every age appropriate “Milestone” unfolds in and around Nicky’s life. The biggest difference now, is that I know my feelings are normal and they won’t ever entirely go away, and I don’t expect them to. I’ve learned not to pretend they don’t exist or to feel like a failure for having them. Now I can I feel them, and I can let them go.