treading water

Teaching someone how to tread water often feels futile, and sometimes it is. It’s hard to explain to a non-swimmer how to paddle their arms and legs hard against the liquid, as if pushing off, rather than slicing through it like a hot knife in butter. If you do that you’ll just sink to the bottom and remain there forever unless there is someone to fish you out.

Every so often I paddle back through a sea of emails, a few composed from just before Calvin’s birth and continuing on from there. Some are candid notes between my family and me, others dry correspondence with neurologists, neuro-ophthalmologists, physical and occupational therapists, vision specialists, insurance personnel and still others emotional messages to and from mothers of disabled children.

I came across one I sent to my brother Scott, when Calvin was a bit over two years old and had just been diagnosed with epilepsy, in which I wrote:

calvin started drinking from his bottle by himself yesterday and today he is much improved! it is so good to see. i may have told you we have been working on that one for over a year, maybe as long as 18 months. i hope other skills will not take as long. maybe his development can snowball. i am wishful. he is also starting to catch himself from falling backwards by sitting, rather than arching into a back dive. much safer!

so much is unknown about calvin's future and potential. that is very hard for me. at this point speech looks like a long-shot, but you never know. i will try my hardest to help him achieve his very best. i learned that from you and dad.

As I perched on the toilet lid spotting Calvin while he batted the bathroom shutters—something he’s been doing since before he was two—I stared out at the crimson and gold leaves littering the lawn and thought about that email. Calvin still hasn’t learned how to fall back by sitting. The protective skill was emerging just as he changed antiepileptic drugs. On the replacement drug he lost the skill—completely. His speech seems less likely to materialize as the years tick by. He utters few consonants save some “ms” and the occasional “n.” His vocalization is no more than a stream of looping, repetitive hums, round arching “ahs,” clear “oohs” and howling screeches.

I feel like Calvin and I are both treading water in some gigantic fishbowl, with our heads tipped back just barely above the surface, pumping our legs hard against water that just keeps getting away from us—slips through our fingers. We are trying in vain to keep from going under but, like in a miserable dream of quicksand, never making any progress. And though we may be able to tread water forever, it seems we never reach a state of buoyancy where we can gain enough clearance to churn our limbs and propel ourselves away from the mire. We’re caught in an eddy, an endless, swirling, dizzying vortex of missed opportunities, lost skills, stupefying drugs, vicious seizures, dim futures, and constant drudgery. Where every spin of the hour hand is the same as the one before, only that the hand gets bigger, ticking apathetically second by second, nothing changing but the dismal light on its beautiful face.

At the same time, however, Calvin is my little buoy, my life preserver, the one who teaches me to tread water with great proficiency instead of sinking like a stone.

In honor of epilepsy awareness month please share Calvin's Story. Help bring us one step closer to a cure.

photo by Michael Kolster

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