Saturday:
This morning I cried in the shower again, lamenting my relative confinement to what I often refer to as these four walls. It's a pretty hard life raising our disabled son. We are quite restricted, in ways that go beyond the physical boundaries of our home, including limits on travel, experience and time. I yearn to take the family on a seaside stroll, ache for the three of us to walk in the woods, to see Calvin climb trees or catch frogs or pick wildflowers on the side of a hill. But I also relish the thought of taking a family trip somewhere exotic, cosmopolitan and warm. But for years now the most we seem to be able to do is amble a few yards down our street or in town, or peruse the grocery store aisles. I can count on one hand the times we've walked together on the beach, albeit fleeting, because our boy couldn't tolerate something about the scene, and so we've had to turn around mere minutes after we've begun.
I find myself swinging from one extreme mood to the other, at times submitting to my most tender feelings for my flailing, maniacal child, and the next moment feverishly wanting to punch a hole in the wall. The hardest part, I guess, is that I don't see an end to it all; he's made so few strides these twelve years, and with each passing one his development comes closer to plateau.
At twelve, it appears Calvin may have finally hit the terrible twos. Either that or he is suffering from waves of malaise due to benzodiazepine withdrawal ... or he is ramping up to have his next seizure ... or he has a headache. Or cramps. Or growing pains. Or anxiety. Or hallucinations. Or maybe he is just having tantrums now when he doesn't want to do what or go where we want him to. Or perhaps he suffers some unimaginable and sorry combo of them all.
Though I was once a child, it's remarkable to see what healthy kids can do.
This morning began like a dream, Calvin quiet and calm and happy as can be. But after noon he spiraled out of control. At every turn we were met with a red-faced, thrashing, howling boy given to fits of agitation and crying in the grocer and the jumper and the car.
At times throughout the day Calvin shrieked as loud and long as I have ever heard, and I tried as hard as I could to become desensitized to it all, like numb feet in a frigid sea. Exasperated, I caught a glimpse of myself in the bathroom mirror, my face drawn into a wretched scowl.
Eventually, in order to get some chores done before Michael and his students arrived for an end-of-semester barbecue, I put Calvin in his bed hoping he'd "play" with his toys. When the phone rang, I heard my brother Scott's voice on the recorder. I ran downstairs and picked up just as he was signing off, "I love you Chris."
My words to him gushed out in sobs.
"Calvin has been out of control," I quivered.
It was clear to my brother that I'd had a rough time, having told him of Calvin's troubles, his antics, his affect on us all.
"I'm so sorry," he said, with a tone that embraced me from afar.
I went on to describe the painfulness and relentlessness of our situation, of which Scott has always seemed keenly aware, and of how much I value his response, his gift for listening and validating rather than tending to advise or judge or disregard. I cried the length of our conversation, my throat swollen with a bitter lump of despair. And though our connection was short, I hung up the phone feeling loved and immeasurably better.
Michael's students began arriving just after I'd lit the coals. Blue smoke curled in the sun and breeze, and the smell of mulch and charcoal filled my nose. Calvin seemed to be doing much better and, thus, so was I. Perhaps the trick was his late afternoon dose of cannabis oil. But who knows?
Balmy spring weather lead the students outside where they mingled with each other and threw the ball for Nellie. The garden, these days dripping with color, was at its most beautiful hour, early evening, when long shadows stretch across the lawn and translucent blossoms are lit up from behind. It's in these moments—when Calvin is happy and calm, when I can share my garden with others, when my husband is in his element and when the weather is mild—that the tethers that bind me loosen, and I don't feel quite as hemmed in by these four goddamn walls.
This morning I cried in the shower again, lamenting my relative confinement to what I often refer to as these four walls. It's a pretty hard life raising our disabled son. We are quite restricted, in ways that go beyond the physical boundaries of our home, including limits on travel, experience and time. I yearn to take the family on a seaside stroll, ache for the three of us to walk in the woods, to see Calvin climb trees or catch frogs or pick wildflowers on the side of a hill. But I also relish the thought of taking a family trip somewhere exotic, cosmopolitan and warm. But for years now the most we seem to be able to do is amble a few yards down our street or in town, or peruse the grocery store aisles. I can count on one hand the times we've walked together on the beach, albeit fleeting, because our boy couldn't tolerate something about the scene, and so we've had to turn around mere minutes after we've begun.
I find myself swinging from one extreme mood to the other, at times submitting to my most tender feelings for my flailing, maniacal child, and the next moment feverishly wanting to punch a hole in the wall. The hardest part, I guess, is that I don't see an end to it all; he's made so few strides these twelve years, and with each passing one his development comes closer to plateau.
At twelve, it appears Calvin may have finally hit the terrible twos. Either that or he is suffering from waves of malaise due to benzodiazepine withdrawal ... or he is ramping up to have his next seizure ... or he has a headache. Or cramps. Or growing pains. Or anxiety. Or hallucinations. Or maybe he is just having tantrums now when he doesn't want to do what or go where we want him to. Or perhaps he suffers some unimaginable and sorry combo of them all.
Though I was once a child, it's remarkable to see what healthy kids can do.
This morning began like a dream, Calvin quiet and calm and happy as can be. But after noon he spiraled out of control. At every turn we were met with a red-faced, thrashing, howling boy given to fits of agitation and crying in the grocer and the jumper and the car.
At times throughout the day Calvin shrieked as loud and long as I have ever heard, and I tried as hard as I could to become desensitized to it all, like numb feet in a frigid sea. Exasperated, I caught a glimpse of myself in the bathroom mirror, my face drawn into a wretched scowl.
Eventually, in order to get some chores done before Michael and his students arrived for an end-of-semester barbecue, I put Calvin in his bed hoping he'd "play" with his toys. When the phone rang, I heard my brother Scott's voice on the recorder. I ran downstairs and picked up just as he was signing off, "I love you Chris."
My words to him gushed out in sobs.
"Calvin has been out of control," I quivered.
It was clear to my brother that I'd had a rough time, having told him of Calvin's troubles, his antics, his affect on us all.
"I'm so sorry," he said, with a tone that embraced me from afar.
I went on to describe the painfulness and relentlessness of our situation, of which Scott has always seemed keenly aware, and of how much I value his response, his gift for listening and validating rather than tending to advise or judge or disregard. I cried the length of our conversation, my throat swollen with a bitter lump of despair. And though our connection was short, I hung up the phone feeling loved and immeasurably better.
Michael's students began arriving just after I'd lit the coals. Blue smoke curled in the sun and breeze, and the smell of mulch and charcoal filled my nose. Calvin seemed to be doing much better and, thus, so was I. Perhaps the trick was his late afternoon dose of cannabis oil. But who knows?
Balmy spring weather lead the students outside where they mingled with each other and threw the ball for Nellie. The garden, these days dripping with color, was at its most beautiful hour, early evening, when long shadows stretch across the lawn and translucent blossoms are lit up from behind. It's in these moments—when Calvin is happy and calm, when I can share my garden with others, when my husband is in his element and when the weather is mild—that the tethers that bind me loosen, and I don't feel quite as hemmed in by these four goddamn walls.
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| Photo by Michael Kolster |
Christy, I wish I could be another brother to you, comforting you by listening. I hope there is some comfort for you, and Mike, in my reading of your blog. David
ReplyDeletedear david, it means the world to me that you and others continue to read the blog and send your love. thank you so much. hope you are well and we would love to see you here again for some lobster, etc. xoxo
DeleteI don't know what to say other than I have these days as well and they do pass. I'm also thinking how much you need a break -- a week away to rest and sleep and take care of yourself.
ReplyDeleteCould it be puberty? Katie was eleven when all hell broke loose.
ReplyDeleteOh Christy. Sometimes I cry harder when I catch one of my ugly shrew faces in the mirror. It's so hard to be the container holding a family's pain. Gratitude for gardens and brothers and blogs. Thank you for sharing sister. I feel less alone.
ReplyDeleteChristy I have so much admiration for how you persevere and your ability to capture your journey in words. Thank you for sharing the contents of your heart and your struggles. You are an amazing person and mother.
ReplyDelete