The Least Happy Child
By Jen Murphy Parker
July 15, 2024
July 15, 2024
“The number will not be high. It is going to be pretty low.”
I find it funny this has to be stated both ways, as if my own personal IQ is not high, and pretty low, and I wouldn’t understand this news said only once; or, as if this news is so incredulous, it must be reaffirmed.
It isn’t incredulous news—it isn’t even news—but the school psychologist delivering this two-headed summary of my son’s intelligence couldn’t have intimated either of these things, having met me and my son Lew just weeks before. He’s uneasy, busy with a lot of bodily readjustment, as if he hopes the words might somehow otherwise exit him and his mouth won’t have to do the dirty work. We sit in his storage-closet office as he shuffles these first few pieces of paper—the foundation of a skyscraper file constructed of my then 7-year-old’s triennial assessment. Floors and floors of forms noting my son’s shortcomings, a paper-intensive way of saying my son is not standardly—by academic standards—smart.
“Oh, well, I really don’t care.” I mean this, and not in a dismissive, defensive or denying way, or a flagrant way where I’d wear the sentiment emblazoned on a camo jacket. I’ve reached a point where I can speak this sentence with full-on acceptance, regarding what I might have once considered devastating as fully inconsequential.
Maybe the psychologist thinks he is dealing me my first numbers of fear and disappointment. He isn’t. I am already flush with them: there is 1 in 15,000, the occurrence of my son’s severe epilepsy to begin with—a number that seemed comforting pre-diagnosis because, well, what are the chances? The number that tortured post-diagnosis, because, well, when you are the one in the numerator, the denominator hardly matters, and you have found out about chances. There is also 3, the age at which my son had predictably stopped developing normally. There is 8, the mortality risk percentage.
I didn’t care about my son’s low IQ because more than anything I was just happy my son was alive, happy he was still around to have a low IQ.
Of course kids are assigned numbers from the start—weight, length, Apgar scores. Lew had all of those standards on his infant dossier, and had performed well; but then came the non-standard dimensions: 8 months old, 102 fever, 97 second seizure, 2 hearts (his, mine) nearly stopped.
We’d go on to fill spiral notebook after spiral notebook with doomy digits. A 45 second seizure at 1:23pm, another 52 second seizure at 2:37pm, another 16 second one at 4:12pm. Each stat its own violent trauma, the horror lost in the aggregate, like an impossibly large death toll from a natural disaster. Each completed notebook of data stacked on the top shelf in Lew’s closet, saved I don’t know why—as if his neurologist might someday subpoena us.
Until another number: 5. Five milliliters twice a day of a clinical trial drug. When this number started four years ago, right before that damning assessment, all other numbers stopped counting. The spiral pages went blank. We’d begun a fresh new notebook right as this small-pharma miracle took hold. I ripped the first page out, crumpled that record of a dead-end trend, and gave the notebook to my 7th grader to use for Algebra.
As his seizures waned, Lew’s awareness and ability to learn waxed. Reading—a quality of life holy grail—which had seemed unlikely, now seemed possible. He started to associate sounds with letters and began the arduous task of stringing them together. I mistook a lot of the early sounding out for seizures. Oh, I would gloriously realize, he does not need a rescue drug—he is simply revving on the “C” at the beginning of CAT.
Math and a facility with numbers emerged. He became a puzzle fanatic, tackling 60, then 100, then 250 piece puzzles by himself, a combination of problem solving, sticktoitiveness and fine motor skills that felt as magical as if a fairy godmother had made it so with a wand. He started to do his well-worn puzzles face-side down, guided only by shapes and an ever-sharper memory. I regretted that I’d angrily donated the past puzzles of his siblings, deeming them too hard for him. I’d counted him out too soon.
He must be so much happier, people would say. I understood this conclusion. It had roots in another prevalent and simple cultural math—that Lew, because of his compromised health and assorted learning differences, had been my bottom rung in that you’re-only-as-happy-as-your-least-happy-child formula.
While I raged against this false computation, I was also trying to balance my own equation of Lew’s life. In the early days of rapidly increasing seizures, I clung to the dream of normalcy as the path to happiness. If I could just prove my son was the odds-beater, that the reality of his genotype was no match for the dream of his phenotype. At neurologist appointments, I broke out videos of 3-year-old Lew dribbling a ball deftly down the sideline of his brother’s game, aiming to get the whole diagnosis thrown out on a technicality.
I imagined these early days of seizures might resolve and dissolve into a distant tale —a story I might tell at Lew’s rehearsal dinner about how his death-defying toddler years nearly scared the life straight out of us. The story that ended with how silly we were to have been so worried because would you just look at this: a now-man, on the cusp of marriage, about to start his own family, have his own kids to adore and worry over, degrees under his belt, wind under his wings. Clink your glasses to naïve parental fears, and to things working out well. To happiness! Salud.
And yet amidst my hopes and worries, I missed a fundamental, something that felt unlikely in the daily fight for Lew’s life: X had already been solved for. Lew already was happy. Very happy. Perhaps the happiest of my children, never burdened by all of the ways society measures a person.
Lew has always lived a life of mindfulness, the kind that the strung-out rest of us take classes and download apps to achieve. He is not thinking about the future, other than an intensely-hoped-for trip to Hawaii. He is not stressing about the numbers swimming in his siblings’ heads— GPAs, heights, weights, likes, scores, acceptance rates at dreamed-about schools. He is not thinking about what he can or can’t do, or how his frightening diagnosis might hold him back or adversely affect his life.
He is thinking about having as many cups as possible of warm milk today, procuring his iPad for as many minutes as possible, declaring his love for milk, iPads, the moon, his family excessively, and maximizing the number of times he calls my husband a “birdbrain”—a pastime that brings Lew uncanny delight. And then there is the singing.
Lew tends to perseverate on a single song for months at a time. The current hit is “I Think I Love You” by the Partridge Family, introduced to his vernacular courtesy of Croods 2. It’s one of those high-incidence chorus songs, so singing it on loop is terribly easy. Also the word “think” comes up a lot in daily life, which prompts a rendition without fail. When his teacher asks what he thinks 2+3 is, Lew is going to answer that he thinks he loves her.
The lyrics bounce off our walls all day. I sing along with him a lot of the time, even when I don’t want to. The song is like that.
“I think I love you so what am I so afraid of?”
Well, I’ve been afraid of simple addition: medical problems plus low IQ equals unhappiness. I’ve been afraid that if Lew couldn’t count, he wouldn’t count. I have been afraid of loving Lew—afraid that the suicide bomber apparatus strapped to him by his DNA might finally take him—and therefore all of us—out.
“I’m afraid I can’t be sure of a love there is no cure for.”
I read of a company tackling my son’s kind of epilepsy. Unlike previous therapies, this approach will address the seizure burden and cognitive disabilities— a medicinal bottle of Wite-Out for the typo in his system.
This cure is years away, if it comes at all. But since Lew’s seizures are already so well-controlled by those wondrous 5 milliliters, this news doesn’t lift me up the way a decade-ago me would’ve been lifted. It actually bothers me, scares me.
I picture messing with Lew’s beautiful essence. This therapy would “fix” him and he would--what? Take back that spiral notebook for his own Algebra class? Laugh at my silly worries as I toast him at his rehearsal dinner? Read this piece and be mad I sold him short? Know more about all of life’s many numbers to stress about and so, by design, be much less happy?
No longer sing to me for the better part of the day?
While that therapy spends years in clinical trials, I’ll run my own trial of one, running a regression of unbridled, daily joy against a perceived better life. The data won’t lie. Early results already tell me a truth: Lew is not 1 in 15,000. If he’s to be expressed in numbers at all, he is simply 1 in 1.
I find it funny this has to be stated both ways, as if my own personal IQ is not high, and pretty low, and I wouldn’t understand this news said only once; or, as if this news is so incredulous, it must be reaffirmed.
It isn’t incredulous news—it isn’t even news—but the school psychologist delivering this two-headed summary of my son’s intelligence couldn’t have intimated either of these things, having met me and my son Lew just weeks before. He’s uneasy, busy with a lot of bodily readjustment, as if he hopes the words might somehow otherwise exit him and his mouth won’t have to do the dirty work. We sit in his storage-closet office as he shuffles these first few pieces of paper—the foundation of a skyscraper file constructed of my then 7-year-old’s triennial assessment. Floors and floors of forms noting my son’s shortcomings, a paper-intensive way of saying my son is not standardly—by academic standards—smart.
“Oh, well, I really don’t care.” I mean this, and not in a dismissive, defensive or denying way, or a flagrant way where I’d wear the sentiment emblazoned on a camo jacket. I’ve reached a point where I can speak this sentence with full-on acceptance, regarding what I might have once considered devastating as fully inconsequential.
Maybe the psychologist thinks he is dealing me my first numbers of fear and disappointment. He isn’t. I am already flush with them: there is 1 in 15,000, the occurrence of my son’s severe epilepsy to begin with—a number that seemed comforting pre-diagnosis because, well, what are the chances? The number that tortured post-diagnosis, because, well, when you are the one in the numerator, the denominator hardly matters, and you have found out about chances. There is also 3, the age at which my son had predictably stopped developing normally. There is 8, the mortality risk percentage.
I didn’t care about my son’s low IQ because more than anything I was just happy my son was alive, happy he was still around to have a low IQ.
Of course kids are assigned numbers from the start—weight, length, Apgar scores. Lew had all of those standards on his infant dossier, and had performed well; but then came the non-standard dimensions: 8 months old, 102 fever, 97 second seizure, 2 hearts (his, mine) nearly stopped.
We’d go on to fill spiral notebook after spiral notebook with doomy digits. A 45 second seizure at 1:23pm, another 52 second seizure at 2:37pm, another 16 second one at 4:12pm. Each stat its own violent trauma, the horror lost in the aggregate, like an impossibly large death toll from a natural disaster. Each completed notebook of data stacked on the top shelf in Lew’s closet, saved I don’t know why—as if his neurologist might someday subpoena us.
Until another number: 5. Five milliliters twice a day of a clinical trial drug. When this number started four years ago, right before that damning assessment, all other numbers stopped counting. The spiral pages went blank. We’d begun a fresh new notebook right as this small-pharma miracle took hold. I ripped the first page out, crumpled that record of a dead-end trend, and gave the notebook to my 7th grader to use for Algebra.
As his seizures waned, Lew’s awareness and ability to learn waxed. Reading—a quality of life holy grail—which had seemed unlikely, now seemed possible. He started to associate sounds with letters and began the arduous task of stringing them together. I mistook a lot of the early sounding out for seizures. Oh, I would gloriously realize, he does not need a rescue drug—he is simply revving on the “C” at the beginning of CAT.
Math and a facility with numbers emerged. He became a puzzle fanatic, tackling 60, then 100, then 250 piece puzzles by himself, a combination of problem solving, sticktoitiveness and fine motor skills that felt as magical as if a fairy godmother had made it so with a wand. He started to do his well-worn puzzles face-side down, guided only by shapes and an ever-sharper memory. I regretted that I’d angrily donated the past puzzles of his siblings, deeming them too hard for him. I’d counted him out too soon.
He must be so much happier, people would say. I understood this conclusion. It had roots in another prevalent and simple cultural math—that Lew, because of his compromised health and assorted learning differences, had been my bottom rung in that you’re-only-as-happy-as-your-least-happy-child formula.
While I raged against this false computation, I was also trying to balance my own equation of Lew’s life. In the early days of rapidly increasing seizures, I clung to the dream of normalcy as the path to happiness. If I could just prove my son was the odds-beater, that the reality of his genotype was no match for the dream of his phenotype. At neurologist appointments, I broke out videos of 3-year-old Lew dribbling a ball deftly down the sideline of his brother’s game, aiming to get the whole diagnosis thrown out on a technicality.
I imagined these early days of seizures might resolve and dissolve into a distant tale —a story I might tell at Lew’s rehearsal dinner about how his death-defying toddler years nearly scared the life straight out of us. The story that ended with how silly we were to have been so worried because would you just look at this: a now-man, on the cusp of marriage, about to start his own family, have his own kids to adore and worry over, degrees under his belt, wind under his wings. Clink your glasses to naïve parental fears, and to things working out well. To happiness! Salud.
And yet amidst my hopes and worries, I missed a fundamental, something that felt unlikely in the daily fight for Lew’s life: X had already been solved for. Lew already was happy. Very happy. Perhaps the happiest of my children, never burdened by all of the ways society measures a person.
Lew has always lived a life of mindfulness, the kind that the strung-out rest of us take classes and download apps to achieve. He is not thinking about the future, other than an intensely-hoped-for trip to Hawaii. He is not stressing about the numbers swimming in his siblings’ heads— GPAs, heights, weights, likes, scores, acceptance rates at dreamed-about schools. He is not thinking about what he can or can’t do, or how his frightening diagnosis might hold him back or adversely affect his life.
He is thinking about having as many cups as possible of warm milk today, procuring his iPad for as many minutes as possible, declaring his love for milk, iPads, the moon, his family excessively, and maximizing the number of times he calls my husband a “birdbrain”—a pastime that brings Lew uncanny delight. And then there is the singing.
Lew tends to perseverate on a single song for months at a time. The current hit is “I Think I Love You” by the Partridge Family, introduced to his vernacular courtesy of Croods 2. It’s one of those high-incidence chorus songs, so singing it on loop is terribly easy. Also the word “think” comes up a lot in daily life, which prompts a rendition without fail. When his teacher asks what he thinks 2+3 is, Lew is going to answer that he thinks he loves her.
The lyrics bounce off our walls all day. I sing along with him a lot of the time, even when I don’t want to. The song is like that.
“I think I love you so what am I so afraid of?”
Well, I’ve been afraid of simple addition: medical problems plus low IQ equals unhappiness. I’ve been afraid that if Lew couldn’t count, he wouldn’t count. I have been afraid of loving Lew—afraid that the suicide bomber apparatus strapped to him by his DNA might finally take him—and therefore all of us—out.
“I’m afraid I can’t be sure of a love there is no cure for.”
I read of a company tackling my son’s kind of epilepsy. Unlike previous therapies, this approach will address the seizure burden and cognitive disabilities— a medicinal bottle of Wite-Out for the typo in his system.
This cure is years away, if it comes at all. But since Lew’s seizures are already so well-controlled by those wondrous 5 milliliters, this news doesn’t lift me up the way a decade-ago me would’ve been lifted. It actually bothers me, scares me.
I picture messing with Lew’s beautiful essence. This therapy would “fix” him and he would--what? Take back that spiral notebook for his own Algebra class? Laugh at my silly worries as I toast him at his rehearsal dinner? Read this piece and be mad I sold him short? Know more about all of life’s many numbers to stress about and so, by design, be much less happy?
No longer sing to me for the better part of the day?
While that therapy spends years in clinical trials, I’ll run my own trial of one, running a regression of unbridled, daily joy against a perceived better life. The data won’t lie. Early results already tell me a truth: Lew is not 1 in 15,000. If he’s to be expressed in numbers at all, he is simply 1 in 1.
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Jen Murphy Parker is a writer based in San Francisco where she lives with her husband and four kids. Her writing explores what exists in the middle - of parenting, of health, of life. Fourteen years into raising a child with severe epilepsy, she is always looking for the both-ness: the many ways we end up the sum of our best luck and worst experiences.
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Author’s Note:
I spent so many of Lew's early years wishing he could be different, that he could follow the “easy” paths of his three typical older siblings. I didn't know what kind of life he could have given his scary health profile and cognitive disabilities. He wouldn't do all the standards parents hope for their kids - college, a career, marriage, kids - and early on I fell for the cultural equation that without these things, he wouldn't equal happy. Until he taught me that my happiness math was all wrong.
Two favorite parts:
Two favorite parts:
- “Each stat its own violent trauma, the horror lost in the aggregate, like an impossibly large death toll from a natural disaster. Each completed notebook of data stacked on the top shelf in Lew's closet, saved I don't know why - as if his neurologist might someday subpoena us.”
- “I imagined these early days of seizures might resolve and dissolve into a distant tale - a story I might tell at Lew's rehearsal dinner about how his death-defying toddler years nearly scared the life straight out of us. The story that ended with how silly we were to have been so worried because would you just look at this: a now-man, on the cusp of marriage, about to start his own family, have his own kids to adore and worry over, degrees under his belt, wind under his wings. Clink your glasses to naive parental fears, and to things working out well. To happiness! Salud!”