Here's the cut and paste version:

At the baby massage session of the gymboree class I'd signed my six-month-old daughter and myself up for, all eight mothers knelt in a circle, our eight babies clothed only in a diaper and placed on mats on the floor. The instructor, a thin woman in her forties with a bad blond perm, talked us through the basics: to rub the arms and legs in firm, calm strokes from the base of the limb to the tip with plenty of oil or lotion, and to rub the tummy clockwise to aid in digestion. The other seven mothers cast sidelong glances at my daughter, F, of which I pretended to be unaware. I couldn't help noticing the difference between their babies and mine, and apparently, neither could they. Their babies were large and plump, with rolls on the legs and arms, small eyes lost above large round cheeks. My baby was tiny, far below the charts in weight and length, with no scrumptious rolls of fat, unbelievably big blue eyes and a head slightly large for her size. When she was dressed, her tinyness and slimness were less apparent; this was the first time these women had seen her without clothes, and I could see they were shocked, though they tried not to show it.

By then I'd spent seven months trying to prove to myself that there was "nothing wrong," ever since an ultrasound one month before she was born showed that her femurs were below the fifth percentile. I told myself that she was very small because she was a preemie (even though she was only one month premature) or because small genes from distant relatives somehow jumped the family tree's branches to land on my little girl. But at every checkup she was farther off the chart, until it was easier to plot her growth on a chart for girls with achondroplasia--the most common form of dwarfism--than the regular charts or the ones for preemies. I weighed her almost every day, lying her flat on her back on our digital scale that went to one decimal place instead of rounding up or down to the nearest pound. I would weigh her three times, naked, right after a diaper change, and average them, then calculate her daily average weight gain in grams. I would measure her, lying on a white receiving blanket, using a pen to mark her head and feet, trying to keep her still so as to be accurate. I would make three measurements with three different coloured pens, and then calculate her rate of growth.

It was far below what is indicated as normal on the charts or in the many studies I found, so I scoured the internet for proof that this too was ok. I found articles describing rates of growth for different age ranges of infants; her rates of growth for weight and length were at the fifth percentile. I told myself this was because she was exclusively breastfed and she would catch up when she went to solids. (She didn't.)

And it wasn't just her size. At her four-month appointment, my family doctor sat at her desk, twisted her hands together, and said, "I don't know how to tell you this--I think there's something wrong with her eyes."

"Her eyes?" I smiled, as if I considered this a matter of trivial conversation, as if her statement did not send my heart pounding into my ears. I looked at F, and pretended to consider this.

"Not functionally," she hurried to say. "It's just she hasn't grown into them yet."

"She has her father's eyes," I said, still smiling, but my voice growing cold.

My doctor prattled on about the precise measurements that geneticists would make in determining if there was anything wrong with her eyes.

"But if it's just that her eyes are big ...." I said.

"Oh, I agree! Who cares if it's just how she looks?"

.

So by the time that baby massage class rolled around, F and I were on a deadline: she had better start growing before we saw the geneticists, and I'd better dig up some photographs of my husband as a boy. Because there was nothing wrong with her; she would grow someday and her eyes, for pete's sake, were her most beautiful feature. They are unusually large and a bright, crystal blue. Old ladies and teenage girls routinely stopped us in shopping centres to comment on her beautiful eyes. How could they be proof of anything wrong?

She was meeting her developmental milestones; she was rolling over front to back like a pro and had started holding up her head somewhat earlier than other babies. She displayed intense interest in the world around her and could not fall asleep if there was anything in her vicinity to look at. We went to the One of a Kind Show when she was three months old, and she stayed awake the whole day--twelve hours. The lights and colours and people were too fascinating for her to sleep, even tucked into the bjorn facing my chest. And if I told you that she was cheerful and pleasant the entire day even with no sleep, that the only ill effect of it was a need to nurse at 45 minute intervals, you would hate me, but it's the truth. I had plenty to brag about at those Gymboree classes.

But by the time that baby massage class rolled around, I was getting nervous. She was small, and the doctor thought there was something wrong, and her eyes were "too big," whatever that means. The promotional literature on infant massage said it can help babies who are not growing properly to catch up. I paid careful attention to every technique, and while I practiced it, her lying on the mat contendedly, the other mothers trying not to look alarmed, I imagined how her growth rate would suddenly pop up. The doctors would smack themselves on the forehead: "There's nothing wrong with her," they'd say. "Were we ever wrong!"

At the end of the baby massage class, after we'd re-dressed our babies and played with them and sang them songs and I was packing F into her hated carseat to bring her home, the teacher came to talk to me.

"My sister had twins," she said over F's cries. "The boy was really cute, but her daughter looked like a turtle. Really big eyes. You know? And when they were born, she was worried about her daughter's looks. But now she's my prettiest niece. You just wait. Your little girl will be perfect someday."

"She's perfect now," I said.

"Awww, that's why you're a great mom."

I never went back.

Such comments were impossible to avoid altogether, especially from F's doctors who wanted to see her frequently to monitor her slow growth and who rarely missed an opportunity to comment on her small size and slowly-closing fontanel, as well as what they felt were low-set ears, broad thumbs, and too-large eyes. Their comments eroded my confidence in my daughter's beauty, so that despite hundreds of kindly strangers, it is the tactless ones that stood out, such as the convenience store worker who accosted us and starkly asked, "What's wrong with her?"

What's wrong with her? Nothing, and I don't know. She's perfect, and we have no diagnosis.

Misdiagnoses started with the ultrasound, when I was told that her legs were three weeks behind and she might have achondroplasia, hypochondroplasia or Down or Turner Syndrome. Tests ruled those out when she was born. We had a six month period of grace when all assumed that she was normal and her growth would catch up; but when we saw the geneticists about her short stature and large eyes, they began talking about Crouzon or Pfeiffer Syndrome (forms of craniosynostosis when the skull fuses too soon and the brain does not have room to grow; these conditions frequently require skull surgery before one year of age), Pyknodysostosis (a condition in which collarbones are absent and frequent bone fractures are present) and 3M Syndrome (a condition resulting in short stature) even though F lacked the most important symptoms for each one. Each has been ruled out by the preeminent experts in the field. There are no new contenders. The doctors estimate her final height at four feet. Of course, this is a guess. In order to provide a true estimate, they would need a diagnosis.

Because the medical consensus is that something genetic is causing her short stature, my husband and I have received much well-intentioned advice from genetics counselors: If we decide to try again, we have been told, the pregnancy will be monitored closely to determine if the problem recurs, and if it does, I will be counseled on my options. This is a kind way of saying that, of course, like any reasonable people we must be eager not to repeat the experience, so if I am so reckless as to risk my genes on my progeny again, they will do their utmost to determine any dwarfing conditions at an early enough stage that I may abort the fetus. This angers me. My daughter is the best person I have ever met: she is effortlessly sociable, a marvel to a wallflower like me; she is almost always happy, even when she's sick; she is solicitous and kind, friendly and fun, intelligent and well-behaved, obedient and helpful; and at the age of 27 months has yet to have a temper tantrum.

On a flight back from Vegas, the new mother who sat next to us, her baby boy asleep on her chest, said: "She's beautiful. She has a light about her. It's amazing." The women sitting behind us were so charmed with her, popping up over the seat backs to say hello, that they sang the Itsy Bitsy Spider to her for 45 minutes. The people in front turned around to grin at her while she played with her magnet toys. Strangers stopped us afterwards to compliment us on her behaviour. How often does a toddler not even two years old earn fans on an airplane?

Still, I can be thankful for what progress our society has made. A great-aunt of mine, very small herself, was sterilized under a government eugenics program in North America near the beginning of the 20th century. I may worry about discrimination, schoolyard bullying, and what adaptations she will require to flourish in the world, but at least I do not need to worry that someone will rip her tiny ovaries out of her body without so much as a by-your-leave before she's even figured out what they're for.

.

By the time F was one year old the specialists and geneticists had done their job: I was no longer trying to prove that she was normal. I knew she was not. She was as far from the 3rd percentile as the 3rd is from the 50th; if you think of a standard growth chart in terms of geography, and imagine that the 50th centile is at the peaks of the Rocky Mountains and the 3rd is in the prairies, then F is in Montreal. She was not catching up; every month she fell further off. It didn't matter what she ate. Baby massage made no difference. Whether and when and how much she slept had no impact at all. At one year, she was 24" and 12 lbs and still comfortably wore her six-month size clothes.

I thought of myself as comfortable with difference, a tolerant person who values diversity. During my pregnancy, after the ultrasound, I often comforted myself with the thought that at least I valued difference and so could be a good mother to a child who wasn’t "normal;" but with my daughter I was confronted with my own hypocrisy. Oh, yes, I value diversity--somewhere else. Not as something my children must contend with and surmount, not as a barrier to their happiness. I wanted her to be normal, desperately wanted her to be normal. Not average. I didn't even want her to be a different size, necessarily, although I know every extra inch is likely to be a benefit to her; I just wanted there to be no pathological cause for her short stature. None of the doctors were willing to entertain this.

This sounds horrible. I know. But it wasn't her size that I worried over; what I could not get out of my head was the thought that if something pathological was causing her not to grow the way she should, then what else could it do? Would her kidneys fail when she turned 30? Would her bones be brittle and prone to fracture? Was whatever the condition is related to heart failure, or an increased risk of cancer? The doctors were constant in reassuring us that they did not anticipate any health problems of any sort; but how could that be? If it didn’t matter to her health, why was it so important to them to pin a label on her size?

In Western culture, bigger is better. We like our food portions big, our bags of snack foods big, our houses big, our cars big, our highways big, our countries big, our movies big, our novels big, our magazines big, and our people big. Tall people are paid more. They are considered healthier. Parents anxiously try to make their children as tall as they can be and worry over the centile lines on the charts. I heard of one mother who offered her daughter a two-thousand dollar Christmas bonus if she would grow six inches that year. While I was being put through the medical wringer over my baby far below the charts, none of the mothers I knew with babies over the charts experienced anything of the kind. They were congratulated. What would the world make of my tiny girl, I wondered? How would she be treated? And, worst of all: How would my inability to accept her small size affect her?

Tales of mothers who wreck their daughter's self esteem with unsolicited comments on their need to lose weight are legion. Did I think that my obsession with her size was somehow better because it was backed by medical expertise, or that it would be less destructive to her sense of herself because I wanted her to grow instead of shrink? I knew I had to learn how to accept this, and then move beyond acceptance to celebration.
My daughter deserves and needs to hear positive messages about her size and her body, regardless of how small she is or why, just as every other child does.

I had no trouble telling her how beautiful she was. Her fluffy blond hair, huge blue eyes, plump round cheeks, adorable meaty thighs and dimpled elbows were marvels I could not help but praise. But the daily weighing and measuring, the fussing with charts, and the way I winced and stammered over stranger's comments on her size would eventually have an impact, I knew. How else could it be, when strangers asked me how old she was, and their smiles fell off their faces when I told them, and I smiled and said, "She sure is tiny!" to give them a way out? How else could it be if my face still fell at the doctor's office on finding out how much she'd grown when she was old enough to interpret it?

I keep a blog to record F's early years--her milestones and accomplishments and all the funny things she does. I have also recorded there our efforts to find a diagnosis and her evolving growth pattern. A woman who has a daughter with achondroplasia once commented there with the story of her daughter's birth. The attendants and the women of her community, in the far north of Canada, envied her her tiny baby and asked what they could do to have a special baby of their own. This helpful comment began to light a way out for me. What was wrong with being small? Nothing. Every problem that she is likely to face is a problem placed there by other people, from building and tool design to furniture construction and the perception that she must be much younger than she is. It isn't her size that causes these problems; it's the attitude that other people have about her size. Maybe I can't expect the rest of our culture to see her dwarfism as anything but a handicap; but there is no reason why I can't celebrate it and love it as thoroughly as I do everything else about her.

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The evening after the fateful appointment with my family doctor that started us on the path to finding a diagnosis that ended with frustration and as much ignorance and considerably less innocence than at the beginning, I tried to make sense of her words for my husband: we were going to genetics not just because she was small, and not because she was sick or had delays or was prone to any problems, but because her eyes were too big. We heaped scorn on the very idea that anything was wrong with our little girl and derived our own diagnoses: Cutie Patootie Syndrome. Big Blue Eye Disease. Movie Staritis. There was not a gram of doubt in our bodies but that the geneticists, when we met them, would feel the same way.

In the fourteen months that followed that confidence was ground out of me. The experts had to be right. I had to be wrong. But after the seventh misdiagnosis, that changed; the experts were wrong. Whether F has a funky gene or an off-kilter metabolism or odd bones or is a one-in-a-million fluke of nature, whether she ends up three feet tall of four foot six, whether or not her upper fontanel ever closes, she is perfect. I don't need normal. I need her.

It is almost the end of Daycare Cold Season, and we are all still sick. Recently, all three of us stayed home with a bad cold, all three dressed in jogging pants and old stained shirts. F begged a story off my husband, and as he is even more powerless against her charm than most people, he agreed even with his sore throat. She curled up on his lap, turning the pages and "helping" him read; her fuzzy blond head rested just underneath his collarbone, and her feet curled against his mid-thigh. She seemed to me at that moment impossibly tiny; her entire personhood marvelously compact, her matchstick fingers cunning, her bird's-chest ribcage sweet. She was beautiful and wholly good. I smiled to see it.

~~~~~

Frances's Big Adventures: http://www.athenadreaming.org/Beanie
http://www.thewholemom.com

first off, i think this is really well written and fascinating. I was hooked from the beginning. as i read it, i kept expecting to get to the last paragraph and have an answer to the mystery of F's size. i like that there is no answer and i think your ending is really good.

as far as constructive criticism--i think in the first part and second part you repeat a few details. i.e. you mention her big eyes in part one then the doctor points them out in part two. i like the idea of letting the dr. point it out. also your first reference to the dwarf chart in part one made me think "ok this woman is writing about her daughter who is a dwarf" instead of thinking that you weren't sure what, if anything, was different. does that make sense?

depending on where you see the final destination for this piece, i think you could trim it a little. the airplane scene didn't do much for me since it seems like a pretty normal thing for people to coo at babies on planes.

oh and i didn't like the jump from talking about F at 27 months and then going to when she was just over a year. i say keep it chronological.

finally i think you should call her something other than "F". to me that is mor ehow you write about your kids in a blog entry or something rather than in an essay. you don't have to use her name, but something like Ms. Baby would be better in my opinion.

overall though i think this is really good. tell us where you are sending it. :)

www.fertilegroundzine.com

Thank you! That's very helpful.

The thing is, she is a dwarf--absolutely--but doesn't have any of the 250 known kinds of dwarfism. So it's also true that we don't know what is going on. It makes it kind of tricky to talk about. But I think I need to make it clearer maybe that while she has some sort of condition resulting in dwarfism it's not achondroplasia and we don't know what it is.

that is excellent feedback. Thanks for taking the time!

Frances's Big Adventures: http://www.athenadreaming.org/Beanie
http://www.thewholemom.com

It's really great! I might think about capitalizing Diagnosis and Misdiagnosis the same way you capitalize Down Syndrome or Cutie Patootie Syndrome. So that they seem more like the Labels that they are.

It's great. And suddenly, I want to be very off-topic because my 21-month-old is tiny, too, and I worry. I am thinking she might not be quite as tiny as yours because they were not quite that worried but we did do a number of tests and see a geneticist. She was actually big through three months and then dropped right off at four months and has stayed right between 0 and 5% ever since, All the tests have been normal and her development has been good. At 20 months, she weighed about 21 and a half pounds and is about the size of the toddlers who are a good five months younger than she is. I also do not care if she is small as long as it is not because of anything that will hurt her or her development...pm me if you want so we can lean on each other a little!

Thanks to both of you. I appreciate your positive feedback. (my favourite kind!)

Just so you know, I also really like constructive criticism, so if you see major flaws, please do let me know. I take it well. Promise.

Lone Star--sure. Your little girl is a bit bigger than Frances--I mean, at 27 months, we're still knocking on 18 lbs--but off the charts is off the charts!

Frances's Big Adventures: http://www.athenadreaming.org/Beanie
http://www.thewholemom.com