At first, before the epilepsy, when I’d tell people about my
toddler son’s gross developmental delays—the fact that he couldn’t hold his
head up until he was almost a year, couldn’t crawl until he was two (and even so,
has never crawled very well) the fact that he utters no words, the fact that he
can’t walk without falling and thus needs a spotter—they’d say things like,
“oh, he’ll catch up,” or “you know, I heard about this boy who didn’t
say ‘mama’ until he was eight but he could play Beethoven compositions on the
piano after only hearing them once.” Somehow I knew that wouldn’t look anything
like Calvin’s future, and though they meant well, their comments only served to
belittle and exacerbate a difficult and heartbreaking situation. And then came the relentless seizures, and the drugs—mountains of them—and Calvin's future, his development, seems more bleak with each passing year.
I first heard of a man named William Sidis on the car radio.
Born in Manhattan in 1898 to Jewish Ukrainian immigrants, he became a child
prodigy. At the age of eighteen months he could read the New York Times and had
reportedly taught himself eight languages in as many years, in addition
to creating an entire language of his own. He was ready to enroll at Harvard when
he was nine but the university wouldn’t admitted him until the age of eleven, citing
that he was just a child. And by twelve William Sidis was lecturing the Harvard
Mathematical Club on four-dimensional bodies.
Sidis was a whiz at math. It is thought that he had an I.Q. fifty
to one hundred points higher than Albert Einstein, that in fact he had one of
the highest intelligence quotients ever recorded. But he lived a life of
relative seclusion, estranged from his parents before dying at the age of 46
from a cerebral hemorrhage. I doubt, from what little I’ve read and with all
his celebrity at the time, that he was a very happy person.
By the standard dictionary definition Calvin is an idiot, though perhaps he might not have been if it weren't for the countless seizures that batter his brain and the mind-numbing drugs meant to stop them. But if Calvin was a child prodigy, a math wizard, a musical
savant like Mozart, a chess champion, a genius or had a photographic memory like the
character in the film Rain Man, it would be no consolation to me. It wouldn’t assuage the
rancor and suffering of his relentless seizures. I’m not even sure it would
serve to make him happy. As it is, I’d give anything for Calvin to be healthy—not
different—just healthy. I’d give anything not to have to stuff all of these chemicals down his throat every morning and every night, which he does
so dutifully, even when he doesn’t want to eat because the drugs upset his
stomach and or suppress his appetite, especially of late.
So, no, Calvin can’t recite Bach or Chopin, can’t even plunk
out a tune on his little yellow plastic four key piano. He can’t make a mark
with a crayon much less scribe a simple equation on a big black chalkboard. He
can’t win at chess, beat the dealers in Vegas or tell us what day of the week
it was the day that we were born. And he can’t recite pi to 22,500 decimal places
like Daniel Tammet can. But Calvin can do what no other human being on this earth can do, which
is to love me in a way that is so utterly beyond words, no genius could come
close to describing, even if they tried.
In honor of epilepsy awareness month please share this story with others. Help bring us one step closer to a cure. It's as easy as pushing a button.
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William Sidis |
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Wolfgang Amadeus Mozart |
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Daniel Tammet |
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Calvin and his Geepa |
Thank you for sharing your son's (and your) story: Calvin's strength and resilience in the face of such terrible difficulties are amazing. You may have already seen this article, or heard about this treatment, but I felt compelled to share with you this New York Times story about another little boy with epilepsy: http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html?ref=magazine This treatment brought one boy to that prayed-for place of "healthy." I can only pray that you find the right treatment for Calvin's seizures, too -- maybe this might help. Many thoughts of strength to you, your boy, and your family.
ReplyDeletedear anonymous,
ReplyDeletecalvin tried the ketogenic diet without any success for over two years. his seizures remained but he turned into a zombie as it seemed to make him metabolize his seizure meds differently. thank you for sending this on in any case, and for your kind thoughts. keep reading and share calvin's story with the world.
take care, christy
Dear Christy,
ReplyDeleteI wrote you a couple of weeks ago but didn't introduce myself. I came to your blog trough Emily Rapp's NYT article.
Your posts move me. Keep on writing, I'll keep on reading.
A big hug to you and Calvin from Italy.
ciao
Federica
dear federica,
ReplyDeletei remember you. you are very kind. i am glad my writing moves you. please share with the world. some day i hope to publish a book, though for now this is the best venue to reach people and tell them about epilepsy.
thank you for writing. sometimes i am not sure what people think about what i write and so when people like you reach out it makes a big difference to me!
xo, christy
Thank you for sharing your story so openly. As a fellow parent of a child with epilepsy, I am grateful to have found your blog. Blessings to you and Calvin on Thanksgiving, for despite the challenges kids with epilepsy face, they are indeed amazing blessings as you've so poignantly said.
ReplyDeleteShawna
dear shawna,
ReplyDeletethank you so much for writing. please share calvin's story with the world. we must let people know how terrible epilepsy is and how neglected its research.
keep reading!
xo, christy
Christy, This is a particularly beautiful post.
ReplyDelete