Throughout the film Tully, watching her I saw myself in a thick, frumpy Charlize Theron screaming at her unhinged kids from behind the wheel of a car. I saw a slice of my life in nearly every one of her scenes—moaning in pain from engorged breasts, wincing at cracked nipples, slouching hopeless in a robe with a frowning mouth and sleep-deprived eyes. I watched her chop food into bite-sized bits, neglect housework for days, advocate for her "quirky" child at an ill-equipped school, field scowls from disapproving strangers, surrender what had been an exciting life to be a devotee of family and home.
In any given month our son suffers more than a handful of seizures, countless manic outbursts, tantrums, restless days and nights, the occasional night terror, and—for me—incessant monotony. As Calvin's mom I likely suffer from what other mothers of disabled epileptic children sometimes call Persistent Traumatic Stress Disorder—stress resulting from the accumulation of past and present strain plus the dread of a bleak future for ourselves and our children.
When I see friends around town, having read my blog they often say, "Sounds like you guys are going through a rough patch." What they may not realize is that this rough patch has lasted fourteen-and-a-half years. Since two weeks before Calvin's birth, when we found out he was missing a significant amount of the white matter in his brain, the burden hasn't let up in any substantial ways. Furthermore, outside pressures—reeling from a friend's suicide, confronting maddening issues with Calvin's school, the difficulty managing his illnesses, the lack of a nurse to help us a little, the current circus-of-an-administration and it's shameful treatment of a sexual abuse victim—add to the strain.
Today, I'm at home with a sick kid who, as a result, had grand mal seizures on consecutive days. He isn't eating or drinking and can't tell me what hurts, nor can he seem to remain calm for more than a few minutes before getting up and pacing restlessly.
So, I guess—like Charlize's Tully does—I should admit we're in a bit of a rough patch. I should soldier on through it, relax once Mary gets here to help us out so we can go celebrate our anniversary, and remember that tomorrow is a brand new day.
In any given month our son suffers more than a handful of seizures, countless manic outbursts, tantrums, restless days and nights, the occasional night terror, and—for me—incessant monotony. As Calvin's mom I likely suffer from what other mothers of disabled epileptic children sometimes call Persistent Traumatic Stress Disorder—stress resulting from the accumulation of past and present strain plus the dread of a bleak future for ourselves and our children.
When I see friends around town, having read my blog they often say, "Sounds like you guys are going through a rough patch." What they may not realize is that this rough patch has lasted fourteen-and-a-half years. Since two weeks before Calvin's birth, when we found out he was missing a significant amount of the white matter in his brain, the burden hasn't let up in any substantial ways. Furthermore, outside pressures—reeling from a friend's suicide, confronting maddening issues with Calvin's school, the difficulty managing his illnesses, the lack of a nurse to help us a little, the current circus-of-an-administration and it's shameful treatment of a sexual abuse victim—add to the strain.
Today, I'm at home with a sick kid who, as a result, had grand mal seizures on consecutive days. He isn't eating or drinking and can't tell me what hurts, nor can he seem to remain calm for more than a few minutes before getting up and pacing restlessly.
So, I guess—like Charlize's Tully does—I should admit we're in a bit of a rough patch. I should soldier on through it, relax once Mary gets here to help us out so we can go celebrate our anniversary, and remember that tomorrow is a brand new day.
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| Photo by Michael Kolster |
The hardest part is that it never ends, ever. Even Katie living in a group home, it still never ends. Even if someone can help, it's still you and your husband in the end.
ReplyDeleteI'm hoping Calvin feels better soon.
Sending you love, dear one.
ReplyDeleteI stumbled across your blog whilst researching an alternative to clobazam and I've been reading through it ever since. Your blog and its pictures are beautiful. You write with so much honesty and love, hearing how much you're family have gone through is utterly heartbreaking. Thank you for sharing Calvin's story, I hope things begin to improve for you all x
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