The ghost of what isn't

Chronic sorrow and grief

There is a cyclical grief process that occurs after having a child with special needs, sometimes called Chronic Sorrow. Chronic Sorrow goes away and then when you least expect it, it comes crashing back down. It can be crushing. It often comes with guilt. Why can’t I just accept my daughter the way she is? Why do I have to keep hurting about what’s lost? Why do I look at what others have and feel the burn of envy? Why won’t this ache in my heart go away? I do love my daughter, with all my soul, but I also mourn for the child I never had.

Sometimes in my mind’s eye, I can see this child who I thought I would have - a bubbly little girl who doesn’t have a genetic syndrome. She’s like a ghost who haunts me. She is the spirit of lingering dreams I had for my daughter. She is a personification of all the “what if’s” and “if only’s”. She is the ghost of things that will never be. She comes to haunt me on special occasions usually - at Christmas; at weddings; at her cousin’s cheerleading performance; at family reunions; on the first day of school. She’s a little wraith who hovers at the edge of my vision, dancing around my consciousness in the world of what-could-have-been. She is a pale reflection of the life I wanted for my child and she reminds me of the life that we have lost.

At my daughter’s fifth birthday party, the ghost was there. My son squealed while he chased his cousins around the back yard. The ghost of the daughter I don’t have ran and laughed with them while my actual daughter sat in her wheelchair on the patio and chewed on a toy. We were surrounded by family, family friends and a couple of my daughter’s therapists, but none of my daughter’s “friends”. She is certainly loved, but she doesn’t have friends, the same way an infant is adored but doesn’t have friends. I don’t know if she is capable of comprehending such a concept. I didn’t invite her classmates from her special education class or her integration class. I was afraid to. I didn’t want her to be that special needs kid who has a birthday and no one shows up. She wouldn’t have known the difference honestly, but I would have, and I didn’t want to be that mom. I didn’t think my heart could take it if that happened.

So we had our small birthday party and it was nice in its own way, but it wasn’t the way I thought my daughter’s fifth birthday would be. We sang to her and then I blew out the candles because she doesn’t know how to blow. I felt the loss keenly when she couldn’t eat a slice of her own birthday cake. Everyone else ate it and instead I spoon fed her some chocolate birthday pudding. The whole time, the ghost of what isn’t sat across the table from me giggling and scarfing down chocolate cake, frosting on her face and pigtails bouncing. I tried to ignore her, but I couldn’t. After we said goodbye to the last guest, after I had taken out the trash and put the last plate in the dishwasher, I curled up in a ball and sobbed. It’s not fair. This isn’t how things were supposed to turn out. Why doesn’t this loss ever stop hurting?

The ghost shows up at unexpected times as well. I once found myself weeping in a ballet class. Before the diagnosis, I always assumed I could share my love of dance with her, that it was something we could do together, but there’s no way she could take a typical dance class. I jumped at the opportunity when I heard about a special needs ballet class. On the first day, I lifted my daughter out of her wheelchair and sat on a stool, propping her up in front of me. She wobbled on her leg braces, leaning back against me for support and staring blankly around the room. We were ready as a group of slim young women in dance clothes stepped to the front of the class. They raised their arms and gracefully began to sway as the music from Swan Lake flowed from speakers. I moved my daughter’s arms in time to the music, mirroring the teachers’ graceful arm positions and suddenly I felt tears sliding down my face. I couldn’t stop them.

I was so thankful to the women who volunteered to work with my child, grateful for the opportunity for her to be part of a ballet class, yet so deeply, bitterly hurt that life had denied my daughter the opportunity for the simplest parts of a typical childhood. Dance, something so close to my heart that had always brought me joy, tapped into a seemingly bottomless well of sorrow for what was lost. As the class continued, my back ached as I sniffled and supported my daughter’s weight while trying to move her body. The little ghost child next to me danced effortlessly, smoothly gliding from one position to the next and smiling sweetly. She wore delicate pink ballet slippers. My daughter wobbled on her clunky orthopedic shoes. My eyes leaked.

I try not to give the ghost power over me or let her manifest in my mind’s eye. Most of the time I can do it. Usually I can remind myself of the good things I have in my life. Usually I can practice gratitude and remember that at least I have a healthy child and that she is beautiful and special in her own way. Often I can appreciate the little things and feel joy in the simplicity of who my daughter is and how she is. On most days I can accept that this is what life has given me and this is what life has taken from her and she is still beautiful and precious just the way she is. On most days it’s enough.

But on the other days, it’s not. On those days, I’m haunted by a giggling sprite who won’t leave me be, the specter of a little girl who never was and never will be, except in my mind. When will she go away? What will set me free? Why won’t she give me peace and just let me live with the daughter I have, and let her be enough?

Perhaps she doesn’t haunt me though. Perhaps I’m the one who can’t let her go. I continue to keep her around, not because my daughter needs her, but because I need her. I grasp at her like the string of a balloon, and I am the one who must decide when it is time to let her fly away. Maybe I’m the one who needs to accept what is before the ghost of what isn’t can stop haunting me.

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