By Pat Gee
Author Thomas Wolfe wrote that you can't go home again, because the place and the people will never be the same. You will never be the same either. But I managed to come back to Honolulu ten years ago, and make a home again in the same house, but with different people. So happy was I to be back, that "home" became one of my favorite words.
Unfortunately, my move meant uprooting my son, Billy, from his home in Kona. For Billy, "airplane" in American Sign Language is the word that lights up his face because an airplane is the way for him to get home. He yearns to return to the place where he had a mom AND a dad, and a grandma and grandpa, whose lives revolved around him.
Even though it's been four years since he's been back to Kona to see his dad, he still signs "airplane" to me every few months when his inner time clock tells him he's due for a visit. He still hasn't forgotten or given up on the desire. But his father has made a new life for himself in which he finds it far too difficult to care for a severely handicapped son -- even for one week, three times a year.
Billy's determination to re-experience the idyllic world he had growing up is certainly understandable when every Thanksgiving and Christmas, airports are clogged with people trying to get home to their loved ones. Unlike Billy, most people have extremely busy lives, jammed with responsibility, yet they brave the chaos of traveling through the minefield of holiday air traffic so that they can eat Mom's home cooking and revive fond memories, if they are lucky enough to have them.
Although Billy now has a very happy life with me, my family, and new friends, there's still that longing for home within him that compels him to open the garage closet regularly to check on the big blue suitcase that accompanied him on the trip home. Usually he tears that suitcase off the shelf and runs with it, rolling behind him, into the house and back to his room unless I can stop him before that.
All 65 pounds of him pulls that suitcase through the house as fast as he can, knocking on doorjambs and bouncing it off the corners of every wall. So determined is he, to relive the anticipation of packing his bag for a trip home.
If he gets as far as his room, he hauls the heavy suitcase onto his bed, unzips it with glee, and looks at me expectantly, It's as if he is thinking, "if I can just get that suitcase packed, maybe I can go."
I sign to him, "Sorry, no airplane," shaking my head.
It does no good. He still looks hopeful and starts to gather the essentials from his closet -- his wetsuit so his dad can take him swimming; his diapers; T-shirts; and the sandals he wears only to Kona. Then he grabs my hand and puts it on the items, indicating that he wants me to put them into his suitcase.
Again, I shake my head, my heart in my throat, and sign, "Sorry, sorry, no airplane."
I make a bed of pillows in the suitcase so he can crawl in and curl up like he used to. This keeps him chuckling happily for five minutes, his long, spindly legs dangling over the side of the bag. Billy is 22-years-old, but he has the body of an 8-year-old -- and the mind of a very smart toddler.
After a while he tries again to make me pack. I sign to him, "Sorry no airplane."
Do I lie to him in sign language, "Daddy sick" or "Daddy working"? Or just tell him, "No more Dad'? That's the hardest part -- trying to tell him why. But I will NOT tell him, "Dad doesn't want you."
It is heartbreaking to tell a child who has only a rudimentary use of sign language why his dad doesn't want him. I imagine that explaining this to a normal child who can understand a lot more, must be the killer of all time. Think of how many children grow up and never get over this rejection, and spend the rest of their lives trying to get someone to love them.
My mom and sisters discuss how we can make it up to Billy by taking him on an airplane trip somewhere else. But to Billy, getting on a plane is only the means to an end, and it means only one thing -- he gets to go home. Putting him on a plane to go somewhere else would not do it; neither would packing the suitcase and taking him to a hotel or to someone's home.
Whenever someone goes on a trip and uses that blue suitcase, Billy thinks that they are going to visit his dad. He probably wonders why he can't go too. Even if I could make him understand, I don't think it would matter to him. He would still want to go, just as some fully-developed adults keep trying to recreate an ideal time in their lives in some form or another, either to re-experience the most secure feeling they've have ever had, or perhaps, to get it right, "this time".
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Copyright 2005 Pat Gee
Pat Gee is a reporter for the Honolulu Star-Bulletin.
Showing posts with label Labors of Love. Show all posts
Showing posts with label Labors of Love. Show all posts
Caring for Billy
By Pat Gee
It's been 20 years since my life was turned upside down, given a hard shake, and was never the same again.
The "life-quake" was caused by the birth of my son, Billy, an occasion my family will be celebrating Thursday evening. But Billy won't be gobbling down the roast beef dinner like the rest of us.
You see, Billy can't really eat -- not stuff like roast beef or anything that has to be chewed. He gets most of his nutrition via a tube in his stomach. Yes, he gets to sample the soft foods, like mashed potatoes and brown gravy (his favorite), ice cream and frosting on the cake. But he isn't allowed to swallow much of it.
He'll sit there, humming to himself and twirling the ribbon attached to a big balloon (another favorite), coming out of his own world occasionally to smile and giggle at the goings-on, if we're lucky. Or he'll pull the tablecloth, and plunge his hand into the potatoes, if we're not.
You see, he can't hear or speak, so joining in the conversation is not how he entertains himself. Don't worry, he'll get to do something fun before dinner. I eat fast, with one eye always watching him, so that he can't do anything too mischievous or gross.
Life with Billy involves the ability to anticipate problems and being prepared for them. Frankly, he's a pain in the butt, but I love him.
Billy is pretty tine for 20, at only 4.5 feet tall and 58 pounds. He was born with a double cleft lip and palate, that was corrected by an operation that left noticeable scars, so his face is a bit lopsided. But I adore his face, and can't help covering it with kisses every day.
People, mostly kids, often stare at him as if he's the most repulsive thing they've ever seen, while other's immediately exclaim, "He's so cute!" It truly astounds me how beauty is a reflection of one's heart.
Raising a child who is autistic and severely handicapped is, to quote a philosopher whose name I can't recall, "like licking honey from a thorn."
You have to try to glean the sweetness of life under the bitterest of circumstances, without having the heart cut out of you. And somehow when you've managed this unlikely feat, the reward is all the more sweet.
What do I get out of it? His crooked little smile lights up my day, and he has an endearing charm that grabs my heart. His giggle is contageous -- except when I hear it at 3 AM, accompanied by his bounding out of bed and turning on the lights. When he reveals how smart he is, we all take the time to marvel at it.
To handle the heartbreaks and frustrations, I've been forced to become resilient and resourceful, comparable to someone with a tenacity to survive in the wilderness. But please don't put me to the test -- I hate camping.
I used to feel like a failure because I hadn't achieved my goals. But one day, I realized that without getting any promotion, becoming a millionaire, or doing whatever the world regards as being a success -- I am a very important person -- even if only to my son. If I were to die, he would suffer because no one would be there to love or care for him, as I have.
There's an inspirational message that sums up my feelings. It goes something like this: In 100 years, it won't matter what kind of car I drove, what kind of house I lived in, or how much money I made. The only thing of lasting value will be that I was important in the life of my child.
***********************
Copyright 2003 Pat Gee
It's been 20 years since my life was turned upside down, given a hard shake, and was never the same again.
The "life-quake" was caused by the birth of my son, Billy, an occasion my family will be celebrating Thursday evening. But Billy won't be gobbling down the roast beef dinner like the rest of us.
You see, Billy can't really eat -- not stuff like roast beef or anything that has to be chewed. He gets most of his nutrition via a tube in his stomach. Yes, he gets to sample the soft foods, like mashed potatoes and brown gravy (his favorite), ice cream and frosting on the cake. But he isn't allowed to swallow much of it.
He'll sit there, humming to himself and twirling the ribbon attached to a big balloon (another favorite), coming out of his own world occasionally to smile and giggle at the goings-on, if we're lucky. Or he'll pull the tablecloth, and plunge his hand into the potatoes, if we're not.
You see, he can't hear or speak, so joining in the conversation is not how he entertains himself. Don't worry, he'll get to do something fun before dinner. I eat fast, with one eye always watching him, so that he can't do anything too mischievous or gross.
Life with Billy involves the ability to anticipate problems and being prepared for them. Frankly, he's a pain in the butt, but I love him.
Billy is pretty tine for 20, at only 4.5 feet tall and 58 pounds. He was born with a double cleft lip and palate, that was corrected by an operation that left noticeable scars, so his face is a bit lopsided. But I adore his face, and can't help covering it with kisses every day.
People, mostly kids, often stare at him as if he's the most repulsive thing they've ever seen, while other's immediately exclaim, "He's so cute!" It truly astounds me how beauty is a reflection of one's heart.
Raising a child who is autistic and severely handicapped is, to quote a philosopher whose name I can't recall, "like licking honey from a thorn."
You have to try to glean the sweetness of life under the bitterest of circumstances, without having the heart cut out of you. And somehow when you've managed this unlikely feat, the reward is all the more sweet.
What do I get out of it? His crooked little smile lights up my day, and he has an endearing charm that grabs my heart. His giggle is contageous -- except when I hear it at 3 AM, accompanied by his bounding out of bed and turning on the lights. When he reveals how smart he is, we all take the time to marvel at it.
To handle the heartbreaks and frustrations, I've been forced to become resilient and resourceful, comparable to someone with a tenacity to survive in the wilderness. But please don't put me to the test -- I hate camping.
I used to feel like a failure because I hadn't achieved my goals. But one day, I realized that without getting any promotion, becoming a millionaire, or doing whatever the world regards as being a success -- I am a very important person -- even if only to my son. If I were to die, he would suffer because no one would be there to love or care for him, as I have.
There's an inspirational message that sums up my feelings. It goes something like this: In 100 years, it won't matter what kind of car I drove, what kind of house I lived in, or how much money I made. The only thing of lasting value will be that I was important in the life of my child.
***********************
Copyright 2003 Pat Gee
The Purple Wheelchair
By Suzanne Kamata
"I'd liek to order the purple one," I say, gesturing to a sample near the wall. It's a Convaid Cruiser with a harness and padded covers, retail value about $800 (though the Japanese government will pick up much of the bill). It looks more or less like an ordinary stroller. The color is vivid and cheerful.
Ms. Takubi, my daughter's physical therapist nods eagerly.
She knows, I think. She knows that I don't want a wheelchair that looks like a wheelchair.
"You can think about a more conventional-type in a few years," she says.
My smile droops a little. Does this mean that Lilia will never walk? Is the therapist revising her assessment of my three-year-old's possibilities?
Lilia first started coming to this center for therapy about a year and a half ago. My husband and I knew that there was something wrong with her legs, not surprising since she and her twin brother were born fourteen weeks ahead of schedule. Lilia weighed only 672 grams at birth, which is small even for a 26-week-old baby. Her brother, Jio, tipped the scales at 920 grams.
While our son's development followed the charts, he quickly caught up to his peers in height and weight, and was walking at fourteen months, Lilia's progress was much slower. At 18 months, her head still wobbled and she could only sit up with support.
Various professionals, including the neo-natal specialist, assured me that her development was simply delayed. Others, including my parents, hinted that there might be a deeper problem. Finally, at the suggestion of Lilia's pediatrician, we took her to a facility for the education and care of physically disabled children. We'd already learned that Lilia was deaf, something that I was still coming to terms with. "Muliply-disabled," would take some getting used to.
After an examination lasting only several minutes, the doctor wrote, "suspected cerebral palsy" and prescribed therapy sessions twice a week. During the first session, I asked Ms. Takubi if she thought that my daughter would one day be able to walk. She told me that it would depend upon Lilia's motivation, among other things, and gave her an 80 percent possibility of perambulation.
"Do you think she'll be walking by the time she's three?" I thought that I was allowing a generous margin, but Ms. Takubi cocked her head to one side and hummed.
"Hmmm."
For the first 18 months of Lilia's life, she was, according to doctor's orders, sequestered from germs. Our house was a fortress, meant to keep out friends and family with a hint of a cold. When my mother-in-law showed up on Christmas Eve bearing gifts and a runny nose, I quickly scooped up the stuffed animals and sent her on her way.
We didn't go to restaurants, weddings, libraries, coffee klatches, supermarkets, or playgroups. When I took my twins strolling, I veered clear of the grannies who were sure to lean down and poke their fat baby cheeks. In this way, I kept my children healthy.
But when we started going to the deaf school's early intervention program and to Hinomine for physical therapy, Lilia began to get sick. Because of her insufficiently-developed lungs (a result of prematurity), a common cold quickly turned into bronchitis or worse. One day, a tiny trickle of mucus would come from her nose, the next, she'd be in the ICU hooked up to a respirator.
Over the next 18 months, Lilia was hospitalized eight times. The six times that she was admitted to the ICU, she was sedated to better endure the discomfort of the breathing tube down her throat. Because she was inert for days, and even weeks at a time, she emerged unable to sit up. Again and again, we had to work toward the same goal.
A few months ago, Lilia turned a corner. It's been almost a year since she was hospitalized for respiratory problems. She no longer takes any kind of medicine. She crawls as fast as she can walk and can stand while holding onto something. A month shy of her fourth birthday, she can climb the ladder of the bunk bed she shares with her brother, and hoist herself into the upper bed.
Lilia has the energy of the Hoover Dam. She's the Shackleton of my kitchen cabinets, a bright and funny child who loves to wear pants on her head. It is hard for me to imagine my extremely mobile child in a wheelchair.
And so, although Lilia is thrilled by a test spin in the sample wheelchair (the conventional kind with big silver wheels) and Ms. Takubi suggests that it might be easier to push, I insist on the purple stroller-type.
I wonder if this makes me like those mothers who take out their children's hearing aids in public so they won't be pegged as deaf by strangers, or the guy in a story I read who opted for surgery to "correct" the eyes and ears of his Down Syndrome daughter.
Is it selfish of me to hope that Lilia will one day run through the halls like those other children we've seen graduate from physical therapy? Can't I dream that the purple stroller will be sufficient, at least until I am ready to embrace the image of Lilia racing down the street in a wheelchair, laughing as she goes?
****************************
Copyright 2003 Suzanne Kamata
"I'd liek to order the purple one," I say, gesturing to a sample near the wall. It's a Convaid Cruiser with a harness and padded covers, retail value about $800 (though the Japanese government will pick up much of the bill). It looks more or less like an ordinary stroller. The color is vivid and cheerful.
Ms. Takubi, my daughter's physical therapist nods eagerly.
She knows, I think. She knows that I don't want a wheelchair that looks like a wheelchair.
"You can think about a more conventional-type in a few years," she says.
My smile droops a little. Does this mean that Lilia will never walk? Is the therapist revising her assessment of my three-year-old's possibilities?
Lilia first started coming to this center for therapy about a year and a half ago. My husband and I knew that there was something wrong with her legs, not surprising since she and her twin brother were born fourteen weeks ahead of schedule. Lilia weighed only 672 grams at birth, which is small even for a 26-week-old baby. Her brother, Jio, tipped the scales at 920 grams.
While our son's development followed the charts, he quickly caught up to his peers in height and weight, and was walking at fourteen months, Lilia's progress was much slower. At 18 months, her head still wobbled and she could only sit up with support.
Various professionals, including the neo-natal specialist, assured me that her development was simply delayed. Others, including my parents, hinted that there might be a deeper problem. Finally, at the suggestion of Lilia's pediatrician, we took her to a facility for the education and care of physically disabled children. We'd already learned that Lilia was deaf, something that I was still coming to terms with. "Muliply-disabled," would take some getting used to.
After an examination lasting only several minutes, the doctor wrote, "suspected cerebral palsy" and prescribed therapy sessions twice a week. During the first session, I asked Ms. Takubi if she thought that my daughter would one day be able to walk. She told me that it would depend upon Lilia's motivation, among other things, and gave her an 80 percent possibility of perambulation.
"Do you think she'll be walking by the time she's three?" I thought that I was allowing a generous margin, but Ms. Takubi cocked her head to one side and hummed.
"Hmmm."
For the first 18 months of Lilia's life, she was, according to doctor's orders, sequestered from germs. Our house was a fortress, meant to keep out friends and family with a hint of a cold. When my mother-in-law showed up on Christmas Eve bearing gifts and a runny nose, I quickly scooped up the stuffed animals and sent her on her way.
We didn't go to restaurants, weddings, libraries, coffee klatches, supermarkets, or playgroups. When I took my twins strolling, I veered clear of the grannies who were sure to lean down and poke their fat baby cheeks. In this way, I kept my children healthy.
But when we started going to the deaf school's early intervention program and to Hinomine for physical therapy, Lilia began to get sick. Because of her insufficiently-developed lungs (a result of prematurity), a common cold quickly turned into bronchitis or worse. One day, a tiny trickle of mucus would come from her nose, the next, she'd be in the ICU hooked up to a respirator.
Over the next 18 months, Lilia was hospitalized eight times. The six times that she was admitted to the ICU, she was sedated to better endure the discomfort of the breathing tube down her throat. Because she was inert for days, and even weeks at a time, she emerged unable to sit up. Again and again, we had to work toward the same goal.
A few months ago, Lilia turned a corner. It's been almost a year since she was hospitalized for respiratory problems. She no longer takes any kind of medicine. She crawls as fast as she can walk and can stand while holding onto something. A month shy of her fourth birthday, she can climb the ladder of the bunk bed she shares with her brother, and hoist herself into the upper bed.
Lilia has the energy of the Hoover Dam. She's the Shackleton of my kitchen cabinets, a bright and funny child who loves to wear pants on her head. It is hard for me to imagine my extremely mobile child in a wheelchair.
And so, although Lilia is thrilled by a test spin in the sample wheelchair (the conventional kind with big silver wheels) and Ms. Takubi suggests that it might be easier to push, I insist on the purple stroller-type.
I wonder if this makes me like those mothers who take out their children's hearing aids in public so they won't be pegged as deaf by strangers, or the guy in a story I read who opted for surgery to "correct" the eyes and ears of his Down Syndrome daughter.
Is it selfish of me to hope that Lilia will one day run through the halls like those other children we've seen graduate from physical therapy? Can't I dream that the purple stroller will be sufficient, at least until I am ready to embrace the image of Lilia racing down the street in a wheelchair, laughing as she goes?
****************************
Copyright 2003 Suzanne Kamata
Explaining Brooks
By Dewi Faulkner
Mothers get to watch a lot of sunrises. One of nature's biggest practical jokes is that babies and toddlers most often have needs that are in no way conducive to nighttime sleep. My nine-month-old daughter is cutting two enormous front teeth, and so has taken to living a cranky-baby swing shift: bed at four a.m. up at nine or ten, with a nice big nap around two in the afternoon. My four-year-old son woke up this very morning at five (nighttime in my book), and without any physical malady or discomfort to fall back on, opened his eyes wide in the darkness, searching for my face, and said only, "I sad."
Mothers get to watch a lot of sunrises. One of nature's biggest practical jokes is that babies and toddlers most often have needs that are in no way conducive to nighttime sleep. My nine-month-old daughter is cutting two enormous front teeth, and so has taken to living a cranky-baby swing shift: bed at four a.m. up at nine or ten, with a nice big nap around two in the afternoon. My four-year-old son woke up this very morning at five (nighttime in my book), and without any physical malady or discomfort to fall back on, opened his eyes wide in the darkness, searching for my face, and said only, "I sad."
After the quick climb into what Brooks has dubbed "the mommydaddy bed," he quickly went back into a peaceful sleep, cuddled between and intertwined with his father and I. Gabrielle rolled around in her big pen on the floor (the only place she'll deign to sleep as of late) moaning and whining and cooing and periodically waking herself up by tugging at the strawberry-colored tuft of hair at the top of her head.
This scene just about sums up the difference between my two children. From day one Brooks has been soft, kind, gentle, and accommodating almost to a fault. Gabrielle has a pleasant disposition as well, but can also be demanding, screechy, cranky, and impatient. She also has a high sense of drama and a great love of the taste of carpet fibers. In other words, and as I was told by my son's speech and occupational therapist a couple months ago, Gabrielle is more "normal."
Normal. This is a word I have spent my life avoiding. I've found that what most of the world sees as "abnormal" I consider unique or beautiful, or funny or art. I was raised to appreciate the shades of gray in the world, and I prefer to talk of differences rather than rights and wrongs. I'm not a fan of charts, averages, guidelines, or statistics. I don't care for things whose only purpose seems to be letting me know I'm not quite measuring up. I'm a banner carrying bleeding heart liberal. As of late, this seems to be something many folks are afraid to admit. Not me! I've made the mistake of straying from the left before, and I have to say, it wasn't pretty. My parents were embroidered-jean-wearing, folk-song-singing, seeds-and-sprout-eating hippies. As a child nothing was pounded into my head harder than the notion that one must thoughtfully consider all the angles and really question the rules before she decides something is truly "wrong" with a person.
But I've come to find out this isn't exactly the dogma of mainstream medicine. When I became pregnant with my son, I took on the characteristics of the typical nervous mother-to-be. Instead of trusting my upbringing, the strong matriarchal circle I was fortunate enough to be connected to, and my own blossoming maternal instincts, I decided I was going to make every effort to do things the "right" way.
I went a little crazy. I read all the books, had all the tests, hungrily lapped up every morsel of advice handed down by the crew of obstetricians overseeing my pregnancy (there were seven at my obstetrics practice, I rarely saw the same one twice). With each procedure, with each seemingly innocuous medical "recommendation" I ventured further and further away from my strong leftist upbringing. Perhaps there is some hormone combination intrinsic to the state of pregnancy that makes women feel they have to reinvent the wheel - if my mom did X, well then by God I'm going to do Z! In my need to create a pregnancy and birthing experience separate from Mom's, I fell square into the "better safe than sorry" trap that constitutes much of modern medicine today.
Brilliant and curmudgeonly comic George Carlin once said, "The reason the mainstream is referred to as a stream is because of its shallowness." I have watched this unfold time and time again first in my dealings with obstetricians and hospital staff and currently in my dealings with pediatricians and pediatric specialists. I will probably never be able to smile at the irony that when I first became pregnant I turned to modern Western medicine because I figured it would be the safer choice for my baby.
In the hospital delivering my son I was given too much medication through my epidural, and wasn't able to feel anything from the waist down until about three and a half hours after I delivered my son. Yes, I pushed him out completely numb, with the doctor telling me to just do what I would do if I could feel the lower half of my body. When I asked if the extra epidural could have caused any damage to my baby, the OB noddingly reassured me that there was no possibility that my child suffered any harm during the delivery. "You have a healthy, beautiful new son! Enjoy this time instead of worrying!"
Despite the less than perfect labor, I still trusted this doctor at this point, still figured his opinions were the safest, so I did what I was told. At the age of eighteen months my son was accidentally given two polio vaccines, one live virus and one synthetic. When the "nurse" came in and administered two injections, I had no idea that wasn't what was supposed to happen. At the next appointment the pediatrician argued at length with me that there was no way my son was given two vaccinations. When he saw the flush of anger creep up my face and my fists clench, I think he finally started to recognize that it was his staff that had made a mistake, not me. He was obviously not used to, or at least not used to having to admit to, being wrong. His narrow, pale face started to glisten under the office's halogen lights. A few pathetic assurances were bumbled out and then he tried to comfort me by letting me know that the technician who had injected my son was a temporary worker and would never work there again. In the reliable, levelheaded, safe world of mainstream medicine temps are given the responsibility of vaccinating infants.
At the age of almost four years old I am told that my son has -well, that my son has something. None of the circus of medical specialists who have examined and analyzed and tested him seems to know what to call it. The pediatrician simply says he is "behind" in speech, cognition, and physical coordination. The speech therapist the pediatrician hastily referred us to says it is either something called "sensory integration disorder" - or maybe it's just his hearing, but she doesn't think it's that, not enough to test his hearing anyway, but then again she can't be too sure. There are lots of names and terms and charts and things that are "supposed" to be happening in my son's development that are not, but no matter how much I beg for it, there is precious little explanation.
And through it all my mind regularly wanders back to the extra epidural and the double polio vaccine. I bring it up occasionally; ask if we can be sure that neither of these procedures affected my son's development. I'm always told with a serious nod that I have nothing to worry about, and that there is no need to look back and bother with all that anyway, because my son is going to be just fine. After a particularly heated discussion with my husband, the pediatrician even had the head of the CDC call and reassure us that if my son were going to have any adverse reaction to the vaccine it would have occurred within twenty-four hours. "If anything you should be happy!" she exclaimed. "He can pass on antibodies to others! He's super-immune!"
My husband was crimson livid about the vaccination mistake. And he agrees with me that the notion of a chicken pox vaccine, let alone a heavily commercialized, advertised chicken pox vaccine is absolutely ludicrous. But he thinks I overreact sometimes, thinks I over-worry; draw lines and conclusions that aren't necessarily there. He doesn't yet see the mainstream as a stagnant, shallow pool of water to be regarded with suspicion and sometimes even avoided. Maybe he never will. Maybe I am too radical. Battling these issues out with my husband has been one of the murkier aspects of childrearing for us so far.
And through it all there is Brooks. Precious, joyful Brooks. Brooks who I dutifully take to a speech and occupational therapist once a month because there is something "wrong" with him. Brooks who I want to do the right thing for. Brooks who I am, to this very moment, terrified of letting down. That's the only reason I don't tell all these people who want to cram my son into some arbitrarily-decided, homogenized little box to kiss my ass. Because what if this really will not straighten itself out on its own? What if he really needs this intervention, and I deny him that? Herein lies the true evil, horror-show of mothering: the endless stream of questions, second-guesses, and questioning of the questions that comes with wanting to do what's best for your child.
If I sound frazzled and unsure of myself, it's because I am. If it sounds like I argue vehemently for homeopathy and liberalism, but live well within the bounds of the mainstream, it's because I do. This is going on every day for me: another doctor, another opinion - another alternative, and despite my instincts I still have no idea what to do.
At Brooks' last speech appointment the therapist--young, bouncy, eager, with the loudest, most nasally obnoxious voice I have ever heard, corrected Brooks when he said "woo-woo" train instead of "choo-choo" train. I'm sorry, but don't both of these phrases fall directly into the category of nonsense gibberish baby talk? When was the last time you heard of a forty year old business man rush out of a meeting calling over his shoulder, "Sorry! Gotta run! Can't miss the choo-choo!" But choo-choo is the one we all say, the silly baby-talk phrase we've all come to agree on as "correct." It's in children's books, toy commercials, it's simply how you refer to a train if you're talking to a three year old. And I suppose this is all well and good except for one tiny problem: I don't want my son admonished because he is using the wrong made-up words. What will they get him on next? The rules of gibberish grammar?
And this is where I clash a lot with the therapists. I see a lot of what is different and "wrong" with my son as unique and wonderful - sometimes even a little bit magical. You can imagine the looks I get when I try to explain this, so I've pretty much stopped.
When Gabrielle was born I was fully, wholly prepared for that natural "normal" sibling jealousy, that subconscious hatred thing that happens when a new baby comes into the home. I was ready to be extra-forgiving and understanding of any anger or confusion Brooks had toward his new sister. I vowed to make sure they were never left alone in a room together, not even for a second, lest Brooks find himself overcome with emotions he didn't know how to handle. Everyone warned me of this phenomenon, and I was fully prepared. But the thing is, it never happened, not once, not even a little bit. And I have never seen anything like the torrent of unadulterated love that flows out of that little boy whenever he is near his sister. On more than one morning my husband and I have peeked into the kids' room to see Brooks lying in Gabrielle's crib, patting her head and singing "Twinkle, Twinkle Little Star" to soothe her back to sleep. How I wonder what you are. Up above the world so high, like a dinosaur in the sky.
When Brooks has an upset stomach he calls it a "bread tummy." He came up with this phrase all on his own, and if you think about it, doesn't it perfectly describe the feeling of nausea? Sort of a bloated, doughy, spongy kind of ailment. I love this phrase, and the whole family uses it now. According to the therapist, we're not supposed to encourage Brooks' "silly talk." But I think this one works; I think all of America should adopt it.
When he can't get his arms through the sleeves of his shirt he says, "My hands can't see!" When he's locked out of the bathroom he shouts, "I can't get over the door!" He refers to any living room as the part of the house that is "home." For example one might hear him shout from the bathroom: "All done bath! I want go home!"
I know I run the risk of sounding like a loving, but incredibly desperate parent. A mother who, in an attempt to see her child in the brightest light possible, is skewing the facts and realities of what is going on in the mind and body of her son. I know Brooks is different. I've watched him struggle with simple directions, answer yes or no to either/or questions, listened to him trail off the at the end of a babbled sentence because he has forgotten what he was trying to communicate. I know the reasons for all the concerns. I've been with him just about every single day, all day, since he was born.
But despite this, I can't help feeling that the further I remove Brooks from therapies, measurements, tests, and percentages the better off he'll be later in life. Brooks has a certain kind of inexplicable grace and light I don't feel should be messed with. Yes, I'm his mother. Yes, I love him with abandon. But I love both my children, and while Gabrielle is amazing in her own right, there is something in Brooks I have never before seen in anyone else, not even my own precious baby daughter. Brooks has a shine and a peace I don't want damaged with "better safe than sorry" intervention. Above all else, I feel my job is to preserve that glow. And if I can't convey this to Westernized pediatric therapy, well, we'll have to part ways.
Right or wrong, I know I won't ever be convinced that there is something deficient or lacking in my son. Can't they see that every morning, when I look into his face, I see the sun rise?
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