Sometimes I feel at the end of my frazzled rope struggling to analyze the relationship between Calvin’s seizure drugs, his dietary protocol, the drugs’ side effects, shifts in his seizure patterns, changes in his appetite and behavior. At times the worry and effort to keep all of these details in balance leaves little space in my mind for remembering things like calling my mother, making time for friends, relaxing, paying attention to the dog and to my husband and to various other tasks at hand. Things inevitably slip through the cracks and I find myself bereft of energy, hope and enthusiasm.
But then reality kicks me in the teeth, rains on my pity party (thankfully) and, by slapping me silly, resets my reality button back to where it should be: in the “on” position.
On the news this morning I heard the story of a mother who had tried to rescue her sons, aged two and four, from their flooded car on Staten Island. After she’d gotten them out of their car seats, the water having risen above their heads, a large wave had swept the two little boys away. Later, in the wake of her attempt to enlist others, who spurned her cries for help in finding them, the toddlers’ lifeless bodies were found.
After hearing the story I said to my husband, as I nursed a cup of hot coffee, “We’re so lucky ... we are warm and dry and fed.” And with a sorrowful face and an ache in my heart I realized that Michael and I and our eight-year-old boy Calvin, who is retarded and non-verbal, cannot walk without assistance, wears diapers, must be spoon-fed, is haunted by seizures and debilitated by powerful anticonvulsant drugs, are—in many ways—lucky. And I think of that grieving mother and the scores of others who live in harms way, who've lost their homes, who don’t have enough to eat, who shiver in the dark, whose precious loved ones have died, and I’m humbled by the ridiculous reality of our fortune.
Reality button: “on.” Now ... how can I help?
But then reality kicks me in the teeth, rains on my pity party (thankfully) and, by slapping me silly, resets my reality button back to where it should be: in the “on” position.
On the news this morning I heard the story of a mother who had tried to rescue her sons, aged two and four, from their flooded car on Staten Island. After she’d gotten them out of their car seats, the water having risen above their heads, a large wave had swept the two little boys away. Later, in the wake of her attempt to enlist others, who spurned her cries for help in finding them, the toddlers’ lifeless bodies were found.
After hearing the story I said to my husband, as I nursed a cup of hot coffee, “We’re so lucky ... we are warm and dry and fed.” And with a sorrowful face and an ache in my heart I realized that Michael and I and our eight-year-old boy Calvin, who is retarded and non-verbal, cannot walk without assistance, wears diapers, must be spoon-fed, is haunted by seizures and debilitated by powerful anticonvulsant drugs, are—in many ways—lucky. And I think of that grieving mother and the scores of others who live in harms way, who've lost their homes, who don’t have enough to eat, who shiver in the dark, whose precious loved ones have died, and I’m humbled by the ridiculous reality of our fortune.
Reality button: “on.” Now ... how can I help?
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| photo by Mark Lennihan / AP |
You are helping every time you put pen to paper-or fingers to keys, as it were. You nailed it.
ReplyDeleteoh my word, yes. I just wrote about how much seizures suck and I really can't say anything nice about them, but my life is about so much more than seizures. this is a perfect picture of that.
ReplyDeleteHeather