Fighting the Grief


I’ve been thinking a lot about this quote lately. It makes a lot of sense. Why waste time grieving when you have a beautiful child before you? And yet, it slips in, like a cold undercurrent in the river of your life.

I’ve written a little about grief here before, and you may well think that I schlep around with a frown on my face, and that our house is a grim, dark place of mourning.

Nothing could be further from the truth. We’re a happy family. We laugh a lot. We’re silly. Lilly is a vibrant, well-adjusted little girl who sings, dances, likes jokes, and takes great joy in the wackiness of the Three Stooges. We’re far from morbid.

And still, I find myself fighting frequent sadness. In an Early Intervention parent support group several years ago, we talked about “chronic grieving”. One goes along thinking, I’ve got this, I’m over the worst, but then something crops up-Lilly’s tethered cord surgery at three, for example, or any number of other challenges-and it plunges one right back into that dark place.

Often there’s a feeling of guilt associated with the grief. There’s so many other children, so many other people, who are suffering more than we are, who have it so much worse. Kids with cancer, or other fatal diseases. Even with spina bifida, there are so many other kids who have more severe problems than Lilly-endless shunt troubles, numerous orthopedic surgeries, lives mostly confined to wheelchairs. We’ve got it good, compared to these situations. How dare I feel so sad sometimes? Am I so ungrateful?

No. I’m acutely aware of how much worse it could have been for Lilly. We’re lucky, in our way. Still, every time I see a child running or jumping in a way Lilly can’t, the permanent knife in my heart twists. Every time I hear about a three year old who’s been potty-trained, I want to weep. Is that wrong?

I don’t think so. I think everyone has their own province of grief. It’s personalized, and one form isn’t more “justified” than another.

I’m very careful not to show any kind of despair about it in front of Lilly, or give her the impression that it’s her fault, or that she should feel sorry for herself. It’s a private struggle of my own that I’m determined not to burden her with.

And every time I hear this child laugh with glee, every time she surmounts the latest obstacle, every time I see her just being a regular kid, the shadows are chased away, and it’s all sunshine.



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