alone with my thoughts

Sometimes, when I am alone with my thoughts, I find myself wondering which would be worse—if Calvin were to die, or if I had to spend the rest of my life caring for him. I never reach any conclusions.

Yesterday was one of those days. I was stuck inside again with my seizing child who never got back to baseline after the first three seizures, and seemed on the verge of having a fourth all day long. For hours, I watched him fidget endlessly, as if he had ants in his pants and itchy fingers. I followed him around the house as he rambled aimlessly, banging tables and doors, drooling on windows and sills, biting book cases and chairs. I changed countless diapers, soiled bibs, kerchiefs and clothes. These behaviors are not altogether uncommon, but that he didn't engage with me, seemed unaware of my presence most of the time, was less usual. He was camped out, whether consciously or not, in his own post-ictal, drugged-up world. Aside from keeping him safe, I may as well have been alone. Just watching him, I could feel my shoulders cinch up into knots waiting for the next seizure to hit. My brow puckered from tension, tedium, frustration, fatigue and sorrow, my spirit ached from too many hours of little to occupy my thoughts but the myriad of missed opportunities, and the senseless waste of lives meant to thrive and grow.

In-between diaper changes and feedings, I saw a photograph of a dear friend's small child. In it, the boy is standing on a beach, his supple arms and legs exposed, his pudgy little feet and fingers dipped in sand. Calvin should have been like that boy, I thought to myself with a lump in my throat. Healthy. Steady. Able. Aware. Full of potential.

Last night I sat alone eating dinner while watching an account of Rohingya Muslims fleeing Myanmar. In it, Rohingya women wiped tears from their faces while recounting the raping, butchering, burning and burying alive of their husbands, mothers, children, sisters and brothers before their eyes, all part of their nation's ethnic cleansing. Cleansing. Who coined such an antiseptic term for such gruesome crimes against humanity, for genocide? I cried with the mothers, lamenting my own loss which pales in comparison to what most in the greater world face. I thought about how, if only for my own suffering child, I might board a plane to go aid refugees. If only for that simple fact—though I love to hold my precious, feel his breathing and heartbeat, kiss his supple cheeks, stroke his head—I could get the hell out of this life which at times, like yesterday, feels like such a waste.



  1. This is not offered to mitigate the serious, complex questions of waste, purpose, exigency that many of us grapple with as caregivers of our severely handicapped children, and that many people in less extreme situations aren't necessarily pushed to confront, but I find importance and value in the detailed honesty of your writing. There's no doubt that the life I live with my daughter has connected me with the suffering of the world as a continuous undertone, an awareness that's always there.

  2. thank you A. it is nice to know you are still out there following. take good care.

  3. Oh, this is so beautiful Christy. I feel like we were on the same wavelength today as I wrote this afternoon something a bit like this. Maybe it's because we spoke today -- was it today? God, the days are loooooooooooooong, aren't they?

    1. i have noticed this happen on several occasions when we write about the same thing. yes, long days, weeks, months, years. xoxoxox

  4. I feel you, totally Christy. In fact, what severe special needs parent has not had similar thoughts? You expressed them so beautifully though. Thank you for being such a strong clear voice. You ARE helping!

  5. I love what you have written today. Days all blur nights too. One crisis to the next. It never really ends. I was just thinking there are so many healthy children would it have been so hard to just have given me one?? How life would have been so different.

  6. A quote from Oriah:
    'We live in a culture that reveres the heroic, but so much of life is about a more quiet kind of courage.' (Oriah)
    I think it needs all kinds. And I'm convinced you are doing more than your share. Courage.