sometimes so little joy

Sometimes there is so little joy in raising a child like Calvin whose seizures persist, whose development is so slow it almost feels as if it is going backwards (indeed in some ways it is) whose anticonvulsant drug side effects ruin any semblance of balance, coordination, appetite and attention that he otherwise might have, and whose days and nights are carbon copies of each other—hours of monotony on top of mind-bogglingly repetitive behaviors spiked at times with manic shrieks, grinding teeth and hugs I can barely enjoy because he yanks my hair so hard.

This morning I woke to a Facebook friend's post of an old photo of her with her vibrant, bouncing baby boy who is now two years old, can no longer see, is paralyzed, has seizures and is dying from Tay-Sach's disease. Along with the photograph she wrote this caption:

Little guy in earlier days. Missing him, then and now.

The words brought tears to my eyes. Though Calvin's death does not appear imminent, I have some sliver of understanding in wondering what Calvin might have been like now if it weren't for his epilepsy, if it weren't for the drugs.

"Hold fast," I told her, "Hold fast to your boy then and now," and of course I know that she is. It's what we do.

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