No guilt, just grief

Dear girl, yesterday you made me earn my salary.

Oh wait--that's right--I don't get paid. Let me rephrase that: You made me work. You had a summer cold, a lovely one that made you cranky and lost you your appetite but did not make you tired. So you continued with your regular home-day program of perpetual motion, now accompanied by the foam phone your Mumms gave you on Sunday, which you held to your year while saying "hello?" You cried so piteously for "pen! pen!" that I dug out the non-toxic gel markers and let you have at the construction paper--not realizing until much too late that while paper is fun, flesh is better, and cotton onesies are best of all. You were, shall we say, well decorated.

I had the television on almost all day in a futile attempt to encourage you to sit down, but nothing doing. Oh, you would sit for a few moments. Just long enough to lull me into a false sense of security, and the moment I reached for my magazine--bam! Up you got, and off you went.

You did not want breakfast or any kind of regular meal, so instead I chased after you with arrowroot cookies, bowls of cheerios (which you dumped onto the floor), a sliced peach, a sippy cup full of watered apple juice, and a wad of kleenex to wipe up the metre-wide river of snot you left behind you everywhere. Finally, at 11:56 am, while sitting on my lap watching the scene in Shrek where they rescue the princess--you fell asleep. All was fire and noise and mayhem on the TV, but it was no match for your cold. Maybe because I had finally managed to pinion you into a semblance of rest.

I carried you up to your crib for your nap.

I wish now I had let you stay on my lap instead.

I miss you, baby girl. I do. These 40-hour workweeks are so hard for me. I know you're having a great time playing with all those exciting daycare toys and the wonderful women there who care for you so well, and how couldn't you, when half the time you come home with paint and markers all over your little arms and hands? I love your artwork, by the way; I am already saving up all of your little scribbles and projects. You don't have any sense yet of how to draw shapes; you're perfectly content with brightly coloured squiggly lines; and so am I, because you love to draw them so.

I don't believe that daycare is damaging you. Not for a minute. You love it. You lap up all the affection and admiration you can get from any source you can get it. Me? Not so much. I know I could never do the SAHM thing, in great part because I tried it for a year and it almost killed me. But the last few months, when I was doing two days of school a week--that was sweet. It was just enough. It was exactly the right balance. And I'm never going to have that again.

I think and think and think myself in circles, but no solutions come to mind. Yes, if I approached my employer about part-time work, I'm sure she would say yes. She would grumble about it, and I would have to work a lot harder while I was here, but I'm sure she would say yes. The problem is that we can't pay our bills on less than my full salary. Even with it, it's a struggle. Toronto is an expensive place to live.

I don't have a bad job, or a bad employer. I just miss you. Yesterday was hard, good maude, I was so exhausted by the time your Dad got home that all I could do was sit on the couch and say, "Yeah, she was doing that all day. That too. I know, it's funny, eh?" While he chased you around. And I finally got to read more than two sentences of my magazine. But still--it was sweet.

It was sweet to watch you careen around the house, pointing out everything you saw, from the rain falling on the deck to the crackers on the coffee table to the TV and the bears on the screen and the Dragon and the donkey in the movie, and the cat I drew on the construction paper, and the baby on the computer monitor. It was sweet to amaze you by snapping my fingers. It was sweet to make you laugh by kissing you under your chin a thousand times in a row. It was sweet to shake my head as you drew thick black lines all over your legs and shirt. It was sweet to watch you pound the TV screen with a pudgy little hand, shouting "rabbit! rabbit!" when Max and Ruby came on. And woe betide the hapless mother who thought we'd had enough TV for one day and tried to turn it off!

It was exhausting, but it was so lovely to be with you, and today I'm sitting here at my desk missing you like crazy. Knowing there's really no way I'm ever going to get more time with you than I already have. And it's not enough. It's not ever going to be enough.

There are mothers in worse circumstances, working 80 hours a week, not by choice but because the welfare money stopped and they were told to get any kind of work at all and that was all they could find to pay the bills, leaving their precious babies with unaccredited strangers, no police or safety checks or references, because it's all they can afford. I know I'm lucky, and I do feel grateful for everything I have and am able to share with you, but it doesn't stop me from missing you.

I went back to work last December 6th. In order to get the top-up benefit, I had to agree to come back for at least as long as I'd been on leave--eleven months. So I am required to be here until November 6th. In the beginning, although it was hard, I thought by then for sure I'd be used to this. I figured I'd adjust, and eventually I would be ok with the time we have together. But I'm not. I don't think I ever will be. And I don't have a choice.

I just miss you.

Posted by Andrea at 12:23 PM | Comments (6)

Birth Story

One of the things I lost when my old site crashed was Frances’s birth story. No, no, don’t worry; I still have the backed-up version myself. But it’s lost to you, dear readers; even google’s cached version is gone.

Not that that’s a bad thing.

My last day of work was December 19. I was very proud of myself for arranging my maternity leave so that a few days of sick leave in December would give me a month off before the baby was born, on January 22. I had a lot of things planned for that month. Things like finishing the baby shopping, and packing the hospital bags, and starting to make some announcements.

On December 21, I went to a surprise baby shower organized by a friend of mine, Alex, who has since dropped off the face of the earth. (Rachel, have you heard from her lately?) It was great. We also did a book swap. I remember standing in Alex’s doorway when I was going home saying, “I love being pregnant. But I am so looking forward to putting the baby down!”

At home that night, I put away her little things, ignoring a very sore stomach. Erik had a cold and was sleeping in the guest room so he wouldn’t infect me, and I was scared I was coming down with it too. I went to bed around 10:00.

Just after midnight, I woke up to a wet mattress.

“Oh great,” I thought. “I knew you lost muscular control later in pregnancy but I didn’t think I was going to wet the bed. Thank goodness Erik is sleeping in the other room.” I got up and got some towels to dry off the wet spot and noticed my stomach was still very sore. It felt like gas pains.

“This doesn’t smell like pee,” I thought. I tried to get comfortable lying on a large towel. Yes, the bed was still wet. I was very tired. “What if my water’s broken?”

I sat bolt upright. What if my water was broken? How would I know? I sat on a toilet and tried to figure out where it was coming from. Oh no no no—it was my water broken. My water had broken and it was exactly one month until my due date and, as any pregnant woman will tell you, once your water breaks you deliver a baby within 24 hours.

But at the same time—it was one month early! I couldn’t be about to have a baby. I had a month to go. I wasn’t ready yet. This had to be a false alarm, and I was just wrong.

For about thirty minutes I waited and worried and wondered how I would know if it was my water breaking or a really embarrassing lack of muscle tone when I thought, “Oooh, these gas pains are bad. What could I have eaten?” I looked at the clock. “It’s a little odd for them to be coming so regularly, isn’t it?”

That was when I really started to get scared. I started timing the ‘gas pains’ and, sure enough, they were about seven minutes apart. “I should try to get some sleep,” I thought. “If I’m going to have a baby tomorrow I’m going to need more than two hours of sleep.”

I tried, but the contractions—because that’s what they were, and you clever folks have figured that out by now, I know—were getting worse and I couldn’t relax from pain, and worry, and fear. They came closer and closer together. Soon they were under five minutes apart. It was not yet 1:30 am.

So I got up and started to pack my hospital bag. It was better to be on the safe side, right? Even though at this point I knew they were contractions and knew that my water had broken, I still believed that if we went to the hospital they would only laugh and send us home again. So I got out my pregnancy planner and packed a hospital bag, not really believing I would need it.

The contractions were getting bad, but I was getting through them ok—grabbing the rails on the bed, and bending over, swaying my hips, trying to breathe—but I couldn’t pretend that this was an obvious false alarm anymore. Of course, it had to be. I was one month early. Therefore it had to be a false alarm. But I woke Erik up at 3:30 anyway, and said, “I need you to time my contractions.”

They were three minutes apart and lasted for about 45 seconds.

I called the hospital. “Hi, I’m registered to give birth here in January,” I said. “But I think I might be in labour.”

“Are you having contractions?”

“Yes. They’re three minutes apart.”

“When are you due again?”

“January 22.”

The woman on the other end of the line sighed. “You’d better come in, then.”

The hospital was only five minutes away, but it was five agonizing minutes—contractions sitting down are nothing like contractions up and moving. By the way, am I alone when I say that I’d like to go back in time and strangle whatever male doctor first decided to call these head-to-toe previews-of-purgatory “contractions”? We got to the hospital and I tried to stand in the emergency room (the after-hours entrance for L&D) while Erik got us registered.

“Go! Go!” The nurse in attendance said, shooing me towards the elevator. “You don’t need to wait for this. Your husband can catch up with you in a minute.”

I got to the check in desk and probably said something brilliant like, “I think I might be in labour?” At this point things become a bit of a blur. They got me to lie down flat on my back (!!!) on a hospital bed and strapped into an electronic fetal monitor (!!!) which, by the way, can be accurately renamed Maternal Torture Device, and checked to see if I was dilated. Yep, three centimetres. Maybe a touch over. And those were contractions, all right.

The doctor—an OB I hadn’t liked much when I dealt with him in the high risk clinic—turned to me and said, “You’re having a baby.”

I might have mumbled something about if they couldn’t stop it or keep me on bedrest or something—but no no no.

By the way, the OB who was attending me will be forever famous for something he told me at an appointment I had with him before the Ultrasound From Hell experience: I was asking him what the point of all these tests were, and why all these procedures geared to women with poorly controlled diabetes were being targeted at women with well-controlled diabetes, and what if I didn’t want all this monitoring? He said, “You’d be glad of this if we found something wrong.”

“Why?”

“Well, we might be able to fix it.”

“How?”

“We could give the baby steroids.”

And then, of course, they did find something “wrong” and it was something they couldn’t fix or even diagnose and it just made the rest of the pregnancy stressful and frightening, and I ended up seeing him for the results of some of those ultrasounds. When I sat there talking with him about short femurs and hypochondroplasia and genetics appointments I often wondered if he remembered once saying to me, “You’d be glad of this if we found something wrong.” I doubt it. Bedside manner was not their strong suit.

Anyway, there he was, delivering my baby. And there I was, strapped on my back hooked up to an EFM, not even able to sit because of all the crap they stuck into me, exactly what I didn’t want. And the contractions were getting worse, I was scared—not only of childbirth but of early childbirth and not having any idea whether the child I was giving birth to was healthy or not, thanks to the Ultrasounds From Hell—and not coping very well. I remembered being told in the childbirth class I took that you should breathe quickly when the contractions were peaking, to help you crest them. But then when I did the nurses would yell at me—“Slowly! Breathe SLOWLY! You’re too tense, you’re going to hyperventilate. Are you sure you don’t want an epidural?” And I would fix wild eyes on the face closest to me and try to breathe SLOWLY.

I begged them to take the EFM off, just for a few minutes so I could sit up, walk a bit, change position, but they wouldn’t. If this happened again I would take it off myself, I think. “You’re preterm,” they said. “We can’t take this off when you’re preterm.”

Well, maybe they were right. What did I know about preterm delivery? I knew about diabetic pregnancies. I knew about achondroplasia and hypochondroplasia and down syndrome and turner syndrome and inductions and c-sections and macrosomia and shoulder dystocia and all kinds of things for which I was marginally prepared. But preterm delivery? Nope.

At 6:00 am they offered the epidural again. I asked if they could see how much I was dilated before I made up my mind. Just over 4 cm.

I thought—“I could do this, but why should I?”—and got the epi. It made a huge difference. I couldn’t feel the contractions at all at that point. I could relax and even joke with the nurses. When they checked me 45 minutes later, I was 10 cm, and an hour after that, they told me I could push. I still couldn’t feel the contractions so I had to rely on them to tell me when and how. Now the doctor came back—I was pushing, but the baby wasn’t moving as much as they wanted and that hideous, tortuous EFM was making little noises they didn’t like, so the doctor—what a swell guy!—got out the vacuum extractor and sucked my little girl out at 9:51 am, December 22, 2003.

“You have a baby!” the nurses and doctors said.

“She’s here!” said Erik. “Look, Andrea.”

And I looked. A small girl, red, covered with white smeary vernix. Long, dark hair plastered to her head. Limbs clenched in tight against her torso. No frontal bossing, trident hands, epicanthal folds, or any of the secondary signs of the syndromes I was told she might have. Two huge, dark, staring eyes, wide in shock.

The doctor then reached in and pulled the placenta out. Even with the epidural, that hurt. I still don’t get it. That would have come out on it’s own within thirty minutes; why rip it out?

They cleaned Frances up, wrapped her in a pink blanket, and laid her on my chest. I held her and thought—“Wow, I’m a mom.” And there she was, my little girl, my Frances. As adorable and perfect as I’d wanted. But making slight noises, little wheezy breaths. “That’s not crying,” one of the nurses said. “She’s having trouble breathing. We have to take her now.”

And they did.

They set me up in my room. Erik called my parents and they came with a big basket of flowers and a little pink teddybear wearing a t-shirt that said “I was born at Large Suburban Hospital.” The teddybear was bigger than Frances. I cried a lot. Here I was a mom, but my baby was somewhere else, and gods only knew what was happening to her. I couldn’t hold her, I couldn’t care for her, I couldn’t bring her home. It was not the way birth was supposed to be. Not the way I’d wanted it, certainly. Because of my medical history, I’d imagined something wholly different—a large baby who was born late, by induction.

It was a few hours before Erik and I could go see her. When we did, she was covered in wires. She had an oxygen sensor strapped to her foot, an iv, a feeding tube through her nose taped to her face, a little anonymous hospital cap, and a blanket. She was lying on her tummy in an incubator, a large plastic bin with two flaps in the front where I had to put my hands through if I wanted to touch her. They were feeding her formula down the nose tube because my milk had not come in yet—obviously—and it was their policy to start feeding preterm infants immediately. All I wanted to know was when I could bring her home.

I went home on Christmas Eve, but it wasn’t exactly festive. We didn’t even hang our stockings—just handed them stuffed to each other Christmas morning before heading off to the hospital to see Frances. Not that she knew what it was all about, I know, though my family joked that she was born early so as not to miss Santa’s visit.

All I wanted to know was when I could bring her home.

First the oxygen sensor went. Then she started maintaining her own body temperature and was moved from the incubator to the bassinette. She went from 5 lbs 1 oz at birth to just under 5 lbs, and I was told that she would need to first start being able to accept her feedings through the nose tube so that they could remove the IV. She did. Then I was told she’d have to start accepting all of her feedings by mouth, either by nursing or bottle-feeding. I’d told the nurses I didn’t want her bottle feeding, when they asked, but they did it anyway and I was so desperate to just get her out of there that I didn’t complain. She did that, and then I was told that she’d have to stop losing weight.

It seemed like we’d jump through one hoop just to find another one.

I poured over her charts at every visit—how much she’d eaten, how, when, how much she weighed, what her diapers were like. I planned my days around being there for her baths and feedings, and seethed with anger when they changed the schedule without telling me. Every time I had to leave, we’d both cry. I hated to leave her behind in the care of people who just could not care for her as much as I did. Every time her weight showed no change or a slight dip, I’d cry, afraid that they would never let me take her home.

On December 29, I managed to track her doctor down. A nice man, he’d been the only one to reassure us when she was born, coming to my room and mentioning the tests that had been performed due to the ultrasounds during my pregnancy, then saying, “She looks fine to me.”

“When can I take her home?” I asked. I must have looked like a crazy woman, hair probably unwashed, tired puffy eyes, blotchy skin still covered with pregnancy acne.

“Well,” he said, “She needs to be taking all of her feedings by mouth and we want to see her weight stabilized.”

“It’s been stable for three days,” I said.

He looked surprised. “Then I think we can discharge her tomorrow.”

December 30 we brought her infant car seat and a little outfit and jacket and blanket to snuggle her in. I was so happy. Finally! Finally we were bringing her home, to her family, where she belonged. We took down the little hospital stocking the nurses hung by her bassinette, the little sign they made for her stand, her leftover packages of bottles and lids for the pump, the clothes and blankets and toys we’d left there with her, and got her dressed, and snugged in.

“After all,” as one nurse said, “If she loses weight again we can always readmit her.”

I pretended I didn’t hear her. Did these nurses see it as their job to discourage and frighten vulnerable new preemie moms?

We took her home, and tucked her snugged in a blanket into the little bedside bassinette we’d had ready for her for a week, and took a picture. We celebrated New Year’s that year the way new parents are supposed to celebrate it—at home, exhausted, asleep well before midnight, wondering what they had gotten themselves into. I finally had my happy ending.

Slightly obscured by slow growth and reflux, but happy nonetheless.

Why this sad/happy story, of all possible sad/happy stories, for the Tuesday Tearjerker this week?

Last week, one of my colleagues began experiencing third trimester bleeding. Which is scary, but not always bad. Except that this past weekend, she delivered her baby—a little girl.

The baby was due in November. She was not quite 29 weeks pregnant.

Frances was in the hospital only 8 days, which seemed endless and terrible at the time—but this little one has a much longer road ahead of her to rejoin her family at home. And thinking of it brings back all the fear and grief and anger of Frances’s birth, mixed in with the joy, and knowing how much harder and more frightening it must be for their little one to be born so early—

Most of the time, I don’t really think of her preemieness. It has since been overwhelmed by the growth and reflux and genetics issues we’ve dealt with on an ongoing basis, and besides being perhaps a little bit smaller than she otherwise would have been, Frances shows no signs of having been a preemie, except for a small Rubbermaid bin filled with unimaginably small clothing in the basement and a collection of photos showing a little baby who once fit on my forearm, head in my elbow, feet in my hands.

But this brings it back, and overshadows it again with another family’s much greater difficulty.

I don’t have the reach of one of the Big Bloggers, but please remember to send kind and healthy thoughts to this little girl and her parents as you go about your days.

Posted by Andrea at 8:29 AM | Comments (13)

Getting to Celebration

After the first scary ultrasound, where I'd been told that my baby had an increased chance of achondroplasia and hypochondroplasia, I walked to my car on autopilot, like a zombie, and managed to get into the driver's seat without crying. But that was as far as my resolve held me. I couldn't even get the key to the ignition without dissolving. Over and over again in my head played the words, "There might be something wrong with my baby. There might be something wrong with my baby."

In many ways, my mental and emotional life since that day has been a response to two of those words: "Something wrong." Wrong. A horrible word when applied to one's child, to any part of one's child, to the product of one's hopes and dreams and work for many years. Wrong. Like a miscalculation, or error, or even worse, a sin.

Since that appointment, I've tried hard to reconcile the inherent "wrongness" of receving a diagnosis (or, as the case may be, misdiagnosis after misdiagnosis) with the absolute, crystal-clear "rightness" of my baby girl. It's not easy, and it's showed me a lot of things about myself I'd rather not have learned.

It wasn't obvious before Frances was born. While I spent a fair bit of my time wailing and gnashing my teeth over the horrible injustice of a genetic accident befalling my beloved baby girl, I wasn't yet confronted with the reality of it, so I could remain, in a sense, secure in a self-righteous belief that at least I could do a better job of this than most people. I like difference. I see no virtue in conformity or normalcy. Some people might call this contrary, but I often choose the ignored or off-the-beaten path for no better reason than that it's different. Different is good, normal is boring, was a mantra of mine since my teen years.

Different is good, normal is boring, I told myself; at least I could be a good mother to a different baby, wherever her differences might lie.

I'm not as good at this as I thought I would be.

I think of myself as different. I'm a feminist, a witch, a type-1 diabetic, comfortably placed in the "abnormally intelligent" category, among other things. I have not considered being different to be a liability for so long, I can't remember what yearning for conformity felt like (though I was there, once upon a time). But what I hid from myself was the overwhelming amount of time I spend in normal drag.

Married, mother of one, suburban house-dwelling car-driving government employee in jeans and a t-shirt. Doesn't look that different.

All of my differences which are visible, I chose. All of my differences that I did not choose, are invisible. Thus being a witch can be highly visible, but I chose it; so I assumed the risks in the label and I can take it off when I want to. I didn't choose to be diabetic, but unless I tell someone, they'd never know. You can't see it. It is, I am beginning to see, utterly unlike being different in a highly visible way that was not chosen.

I don't have to suffer for it. When being different would be risky or carry a cost, I can put it back in the closet and present myself as a "normal" person. I have all the benefits and priviliges of normalcy. I took it for granted. Frances will not be able to do that.

Frances will always be small. She can't hide her smallness. Her smallness will mark her as visibly different and she will never have the option of wearing normal drag when being visibly different will carry a cost. And it will, of course; we live in a culture that prizes size.

Big people, big cities, big books, big movies, big TVs, big houses, big salaries, big budgets, big planes, big lakes, big countries, supersized servings of food, big athletes, the biggest-ever issues of magazines every September laden with ads, big cars, big big big. Big is good, bigger is better, biggest is best. Even with babies. Especially with babies. Below the third percentile is a red flag; above the 97th, so far as I know, is not. It's cause for a smile and a pat on the back and a "well done, Mama."

I'm big. I'm 5'8". Not huge, but tall enough to enjoy the benefits that come with size in a culture obsessed with big. What do I know about being small?

I often fear that I don't know nearly enough, and will never be able to learn.

Of course, it's "just small." A grating phrase, but one I use all the time to explain to strangers, family and friend her unusual situation. Not sick, not delayed, just small. It's true, of course; she is just small. But being "just small" will make a difference in her life, a difference I can try to ease for her but never erase. When I try to imagine living in a world where countertops, desks, tables, chairs, televisions, steering wheels, shelves, cupboards, toilets and sinks are 1' to 1 1/2' higher than they are, I see how little prepared the world really is to accept some differences.

I read the other day of struggles some parents of Little People have had in keeping their children out of special ed classrooms in preschool and kindergarten. It broke my heart.

Believe it or not, all of this caterwauling is quite beside my point. Which I am coming to.

I underestimated the difference, and I overestimated my ability to tolerate difference.

It is a galling admission for someone like me--someone who doesn't even like to use the word "tolerate," smacking as it does of grudging acceptance of something despised. Who "tolerates" sunsets or piano sonatas or fudge sundaes? No one. We tolerate mosquitoes, traffic and waiting in the doctor's office. That is not a category I even want to brush against my baby girl in passing, let alone somewhere she has to live.

So a lot of the past 20 months I have spent trying to drag my brain from denial, and defiance, and shock, through tolerance, to acceptance, and ultimately celebration. It has been a much longer journey than I anticipated. I thought I was almost there. Sometimes it feels like I'm pulling myself through the eye of a needle. It's good, I'm tearing off a lot of crap I'm better off without, but OW.

Now I think maybe I have finally made some real progress because I can see where it is I'd like to end up. Tolerance is a seedy motel on the side of the highway; acceptance is a Holiday Inn the next city over (decent, but nowhere you'd want to live); celebration is the end of the journey. It's what my daughter deserves and, come hell or high water, I'm getting there.

I don't want her to spend her life hearing how there is "something wrong" or, alternatively, "nothing wrong" with her or her size. I don't think it's good for the soul to spend so much time hearing about one's potential wrongness, whether endorsed or denied. Can you imagine if you were sometimes surrounded by talk of whether or not your eye colour was "wrong"? Even if most of the time what you heard was, "there's nothing wrong with grey eyes!" wouldn't you get the idea that a lot of people felt there might be?

What I need to do is get to a place where all that Frances hears from me is what's right with her. She can hear about the "wrongness" of being small from other people, and I have no doubt she will (though hopefully infrequently); she doesn't need to hear from me that there's "nothing wrong with being small," or that she is "just small"; she doesn't need tolerance or acceptance from me. She needs me to love her size the way I love her big blue eyes, her fluffy blond hair, her tiny little pudgy baby feet, her smile, her huffy breath while she flips through a book or magazine she loves.

I've been waiting for disaster to fall from the skies and land on her narrow shoulders, for the doctor to say that they were wrong and this is a fatal form of dwarfism, though I know in those cases the babies rarely survive birth. I've been hoping that a miracle would come, that someone would say she really is "just small" and there is no name or diagnosis or label to attach to her. I have to give them both up, stop fearing her size (it sounds silly, but I do) and start to actively love it as another wonderful thing about my wonderful little girl.

I'm spending a lot of words on this, which only shows how hard it is for me to wrap my mind around what should be a fairly simple idea.

Examples (somewhat absurd, yes, but I'm new at this):

1. Small people are environmentally friendly. They eat less food and wear less clothing (if measured by the amount of cloth required to create it), thus consuming fewer resources to sustain themselves.

2. I can still carry her around the house on one arm. I can bend to the ground while holding her to pick something up. I can still comfortably snuggle her on my chest for a nap.

3. We can still play one of her favourite games, toss-me-in-the-air. A nineteen-month baby who's still tossable--that's pretty good. She loves it, I love it.

4. She looks adorable. Walking under the table, crawling underneath me when I'm on my hands and knees, standing by the open cabinet with her head clearly lower than the top of the door--there is something beautiful about something so tiny, so capable and so strong.

5. Her clothes last longer, so I can spend more money on them. The pants she wore last fall will probably still fit this fall. I'm not sure about the tops and onesies, though; this means I can get her some really nice new outfits, because she won't need many clothes.

6. When she spends a bit of time sleeping with Erik and me, she doesn't take up much space in the bed.

7. It's easy to lift her to the top of the slide in the park.

Small is not just not-bad or just-small. Small is good. Small is beautiful.

Posted by Andrea at 1:22 PM | Comments (12)

Welcome to Francesville--Population: 3

When I got my latest issue of Brain, Child a few weeks back, Have a Nice Trip dug right in to a sore spot that I normally try to keep hidden, even from myself.

It's not that I dislike Welcome to Holland, or Moreena's lovely blog based on that piece. It's not that I don't see that utility in the metaphor; obviously I do, or I wouldn't have written posts of my own based on it. It's just that, at the heart of it, it's not about me.

It's about families with children who have disabilities. Known disabilities. The kind that come with a diagnosis, a nice handly label you can hang on the file at school. The kind that lets you look ahead a few years and where you understand something of the treatments and therapies that might help. The kind where there is a whole community struggling with the same diagnosis.

But we're not in Holland. We're not even in Luxembourg. We have our very own country, just the three of us. And it's a nice country. It's scenic, the cuisine is lovely, the people are friendly. But we don't know where it is. We don't know who the government is. We don't know what their plans for the country are. We don't know if we're beside the sea or a mountain range, if we're sitting on a coal deposit or an oil field. Or if we should just grow wheat.

One of the main motivations for me in finding out what Frances's diagnosis is is being able to find other moms in similar situations. Figuring out what our country is, what the language is. Then I'd know what to expect. I could look ahead and have some reasonable estimate of Frances's needs based on her likely growth pattern and speed of gross motor skill development. I'd know if it was safe to buy her 1-year sized clothes for next summer on sale now or if they'll still be too big. I'd know if we have to buy her a helmet for her late-closing fontanelle, or if we should be looking at special furniture for when she is older and going to school and needs a desk. I'd KNOW. Something.

To extend the metaphor, I could figure out what the currency is, what the economy is like, where the local grocery stores are, what roads lead to what areas. We'd have neighbours. We might have a neighbourhood association. Maybe even some tourist attractions.

Instead we live in Francesville, and it's a beautiful country, but we're the only ones here and we don't have a map. There is a government, but they are shadowy and mysterious. They make their decisions behind closed doors and keep the legislation and policies in a dark basement that we can't find. There is no language because there are no other natives.

The park is beautiful. The garden is amazing. The food is delicious, if the portions are a bit small and we have to crimp our legs underneath us to sit at the little tables and chairs on the restaurant patio. We don't want to leave. We just want to know where we are.

The entire country is maybe the size of a city block. Big enough that we're comfortable, we three, living inside it; small enough that lots of people pass by on the borders and peer in to see what this tiny little kingdom is doing here in the middle of their town. "What are you doing in there?" some of them shout. "Why don't you just leave?" Some of them scurry by with pitying or frightened looks on their faces. Some of them are friendly and stop on the borders to chat, willing to try one of the miniature pastries.

Those visits are wonderful. We find every bit of commonality between our two nations and rejoice in it: Yes, our nights too seem to be only about two hours long, but we get several of them in a row; yes, it's gorgeous, but by cod it's loud; yes, it's all a bit crazy and unexpected. And then they say, "And it's all moving so fast now! And getting bigger every day. I swear I can't see my own house from my driveway anymore." And I smile and nod my head and think I guess we're not in the same country after all.

We have visited other similar countries--say, Ireland. Lots of Little People. Lots of big parents ambling around, trying to look comfortable on the small chairs, knocking their heads into shorter-than-expected doorframes. It is a great place to visit, Ireland. But it's not home--Ireland is a wonderful country populated by many hundreds of thousands of people who have a diagnosis, normally achondroplasia. As in conversations with our own neighbouring countries in Francesville, eventually the conversation changes from one filled with comfort and head-nodding to one in which I am smiling politely.

They KNOW, those other parents. They have an idea of how big their little people are likely to get. They know what kinds of therapies, treatments and surgeries they are likely to be offered in the years ahead and they have lots of opportunity to research them and develop their own position. They have other parents to talk to who are going through the same thing. They have neighbours.

In the end, we are only visitors, and we go home to Francesville where none of us really know what the hell is going on.

This is my fantasy:

One day, Erik, Frances and I will be wandering the local narrow streets of Francesville, and we'll find a road we have never gone down before. We'll turn the corner and see another little house nestled behind a little garden, looking peaceful and well-tended. We'll knock on the door, and someone will answer it--another family. And not newcomers, but a family that has lived here for years, one with a child slightly older than Frances. A family who can tell us where we're going--who knows something of the laws and customs of our new home.

I imagine myself and this other mother laughing and talking far into the night, sharing the details of our perplexing lives and nodding in agreement and sympathy--the clueless doctors, the multiple genetics and specialist appointments, the frustration of never having a diagnosis, the guesswork involved with purchasing clothing, the little things like stepstools and modified light-switches that make life easier. I imagine watching Frances play with their child, a true peer. I imagine trading addresses and phone numbers; I imagine finally knowing one other person who truly knows what I'm talking about.

I love all my mom-friends dearly. So much of our experience is the same--the sleepless nights, the feeding issues, in-law frustrations, changes in roles and expectations; and those similarities have truly kept me sane. But we still live in different countries, and visiting is nice, but it's not enough.

Is this selfish of me?

After nearly two years, I still have not found someone (and not for lack of trying) who can say with me: "I do not know how my child will grow up; s/he may be 3' tall, or 4'6", and no one can tell me. I cannot prepare for her life or think about the adaptive aids she may need because the best medical experts in my country have no idea what is going on. Only guesses."

I just want one neighbour. One person who has lived in this country before me, who can show me what comes next. Who can give me a roadmap and tell me where the parliament building is and whether we export wheat or widgets. Just one--one neighbour, one friend, one peer. One person who has explored this country before me.

Somewhere out there there must be someone, and I will keep looking until I find them. In the meantime, I love Francesville for all its beauty, charm and surprises. I don't want to leave. It's just a little isolated, sometimes.

Posted by Andrea at 11:01 AM | Comments (11)

Illustration

Just so you all understand what I mean when I talk about how small she is:

I think sometimes when I say she's small, people wonder how small that means. See all those itty bitty black dots way below the chart? There she is. And that's her adjusted age--by her actual age, you'd have to move them all one month to the right.

Just for illustration--there are other people that small or smaller, but not many.

Posted by Andrea at 4:57 PM | Comments (11)

A Teary Two-Hundredth

Happy Two Hundred Posts to Beanie Baby! My god, do I write too much or what. But I do think that for a two hundredth post, we need something about Frances. The Wicca Story will therefore take a partial hiatus, possibly to return later today. We'll see.

Against all expectations, Tanya is toughening up to the Tuesday Tearjerkers as she enters her third trimester. Can I think of anything that will get the waterworks going again?

Let's try this (something, someday, has got to work again--right?):

Once in a blue moon, maybe two or three times per day, Erik and I will be admiring Frances while she does something particularly cunning. Say, putting the little girl with a flower in her hat onto the Little People horse, and then sending them both down the roller-coaster. Or saying "Blah blah blah." Or curling her wee hands into wee fists and brandishing them on request--"Where are your fists, Frances?" Here they are!

I will say to Erik very solemnly, "I wonder how the other parents stand it, when they see that we have the World's Best Baby Ever, Bar None?"

"I don't know," he says.

"We have to be careful, or one of them will want to steal her one day. They must be so jealous."

He nods, we both grin, and I kiss Frances a thousand times just under her ear to make her laugh.

But I have a confession to make: I am sometimes desperately, bitterly envious of other mothers.

Not for their babies. Gods know no one could ask for a sweeter, more loving and loveable, brighter, happier child than Frances is. She is the light of my life, she is my life, and I would never trade her or a hair on her head for anything else on this earth.

But when I watch so many other women have the kinds of experiences in motherhood that I had counted on, enjoying and taking for granted the health of their babies, it is sometimes hard to breathe. I don't for one second want anyone else's baby (and yes, I am mostly convinced that they want mine) but I so badly want to have that kind of motherhood, even though I know that if you're going to have a preemie reflux baby with genetic issues, that's not going to happen.

Up until our last specialist's appointment, I was more-or-less adjusted to this. I did sometimes feel terribly sad over the gulf between what I thought I was getting myself into, and where I ended up, but I managed to comfort myself by thinking that next time it was almost certain to be "normal." Sure, every once in a while I'd be stricken by panic with the thought that lightning can strike twice--but still, the thought in the back of my head was that someday I'd have an experience closer to what I expected. In the parlance of Emily Perl Kingsley's piece Welcome to Holland, I told myself, "That's ok, I'm in Holland now. Holland is great, I'm really having a good time. I'm so glad I'm here. And I'll go to Italy next time."

But now I know I'm never going to Italy.

No matter what Erik and I decide, it is never going to be "normal." If we decide to go ahead and roll the genetic dice again, I will be monitored out the ying-yang for the entire pregnancy. Forget even being a normal diabetic pregnant woman with all the monitoring that goes along with it, all the extra appointments and ultrasounds, all the extra worry and stress. There is no way I'll be able to wiggle out of a substantial involvement by geneticists, and I will probably be terrified until the screening results come back. Because whatever Frances has is so rare, first-trimester ultrasounds and amnios will be useless; a second-trimester level 2 ultrasound would be our first opportunity to see if we ended up in Italy this time or not. If we did, then hallelujah; after the delivery (assuming that we avoid the preemie-reflux angle this time, and you never know) then we get something more like a normal early infancy. But a normal pregnancy? Forget it. Never in my life.

I feel awful even saying this, horribly guilty, as if I'm comparing Frances to a disease or something. She's not. And I know too that part of what's made the past few years so hard is not knowing. Is bringing this little baby home and watching her stay little and having absolutely no idea why, if she's sick or upset or if something's wrong with her or if I should be doing something or if my brother's hairbrained idea was right and all she needs is more sleep. I can't convey how terrified I was for a good portion of the time when Frances started dropping off the charts. How I scoured the internet for information, read medical databases, plotted her on half a dozen different growth charts, waiting for the one that would make her growth "normal." It didn't happen, of course.

And just starting with this knowledge would make it so much easier. Being able to say--ok, he or she is really small, just like his or her older sister; at least we know what's going on this time. Even that would be a tremendous benefit. And it's not like caring for Frances (post-reflux) has been some horrendous burden; if this genetic syndrome comes with her sweet and charming personality, I can't say it's a curse.

But it's hard, and if this is a recessive thing, then we've got a 25% chance of ending up in Holland again.

Alternatively, we could adopt.

Then we're likely to end up with the normal early infancy, but I wouldn't be pregnant. I wouldn't give birth. And I wouldn't breastfeed--and it crushes me to think I might never do that again.

So no matter which way we go, "normal" isn't on the menu.

I am having a terrible time adjusting to this. I can't seem to wrap my head around it--that normal is gone, that it's not an option anymore.

All around me are pregnant women. They look forward to their ultrasounds as a chance to "meet" the baby and get pictures. They give birth at term in the setting of their choice. They may spend a day or two in the hospital, but then they go home--with the baby. And they watch the baby grow. They say things like, "I can't believe it, he's grown out of his newborn clothes already!" And "I can't use the bjorn anymore, he's too heavy." And "we've had to move her out of the infant seat because she's too tall now" and "I bought some great clothes for her on sale for next summer, I hope they won't be too small" and "you're soooo lucky she's still so small/not walking yet." And sometimes I am so jealous I want to scream.

And I'm never going to have that. Not all of it. Not the whole package of getting ku, having a stress-free pregnancy with happy ultrasounds, giving birth at term to a healthy baby, and then going home to watch the baby grow. Those simple, obvious things that almost every other woman I know takes for granted. The things I never even questioned because I never knew that it could possibly be any other way.

I have a lot to be thankful for, and Frances is high on that list. And someday I'll get over this and make a decision and move on. I have to. But it's harder than I thought it was going to be. I guess it's only been a month so far--how long until it officially becomes wallowing?

Please understand that I am not expecting or even asking anyone around me to hide their happiness or their baby's normalcy from me. I am so happy for all of you, and there are many areas in which our experiences overlap. I don't want any of you to have gone through what I've gone through. I don't even want me to not have gone through it, since that would mean I wouldn't have Frances and that's a million times worse. I just really wanted not to have to go through it next time.

And I don't get to have that.

Posted by Andrea at 9:51 AM | Comments (9)

Another Love Letter

Baby Girl, it is with shock I look ahead to see June 22 looming so close on the calendar. Less than two weeks away. Then you will be 18 months old. (You are only supposed to be 17 months old, but I am getting over that. Slowly.)

Eighteen months. How is it possible that so much time has passed? I imagine that even the most tolerant of Experts would encourage me to call you a toddler now; but I'm having nothing to do with that. You are a baby, my baby, my beloved baby girl, until you are old enough to tell me otherwise. You even agree with me, making sure to point out the adorable baby girl in the mirror whenever you see her. We both agree that she is pretty special.

There are so many things that make you special, I don't even know where to begin.

Your love of books, though more as objects than artworks, shows itself daily in your incessant demands for whatever "bap" you see nearby and your prediliction for advancing on any bookshelves in your sight to toss them all to the ground. You will sit happily for entire minutes at a time, moving carefully between pages, endlessly fascinated by the images of cats and puppies and alligators wearing shirts. You will point them out and name them, if you can; and if you can't, you will wait for us to name them. I tell your Dad that you get it from me, and that someday you'll be as much of a bookworm as I am. He pretends to shudder, but I think just about anything you do would be fabulous as far as he's concerned. Except, don't crash the car.

I love how you ask me for a kiss: by pressing your little head against my lips, sometimes over and over again.

I love how much you love my belly button and the mole on my arm. They are your talismans. You don't care for anyone else's belly button, I don't know why; but every morning when you wake up while Daddy's in the shower, you roll over me, one hand stuck in my belly button, saying over and over "baba! baba! mole!" When I give your evening milk bottle before bed, you will hold the bottle with one hand and the other hand will be playing with my belly button. Anytime you are within six inches of my stomach you will lift up my shirt and happily proclaim, "baba!" The belly button gets a lot of attention: nibbling, biting, kissing, slobbering. Poking and pinching. Someday you'll be embarassed by everything about me, but not yet.

I love your smile. It shows pure joy with a dash of mischief. You tilt your head down slightly and stare up at me from lowered eyes, all your teeth showing and your cheeks as round as peaches. I'll do just about anything to see that smile. Stick my tongue out and cross my eyes. Make funny faces in public. Blow on your belly and pretend to eat your leg. Kiss you on the neck just under the ear a thousand times in a row. Dance you around the living room until I'm ready to fall over. Tickle your face with my hair. Let you bite my stomach. The options are endless.

And those cheeks, baby girl: Those cheeks are the most perfect cheeks there ever were. Round and soft and firm, the exact right cheeks for endless kisses. I can't help myself. I sit there and stare into your beautiful eyes and kiss your perfect cheeks and stroke your neck right under your chin, the softest skin I've ever known. You are highly addicting; I can't get enough of you.

I love to feed you bits and bites of my own food. Your definite favourites are cheesies and ice cream and cookies. You get that from me, too. I hope my metabolism accompanies it and your love of sweets and snacks won't make you miserable later on. It certainly isn't adding any ounces to you yet; and you will come back for more again and again, pulling yourself up on my knee and crying and pointing until you get another little bite. Who could resist?

But most of all, baby girl, I love how much you love your Dad and me.

It seems most of our time together we spend with one or the other of us toting you around and, I must say, mostly because that's how you want it. You will beg to be picked up, then turn to the other parent and beg them to take you with outstretched arms and a pleading look, then once the other parent has you, turn around to the first parent again. Back and forth. Hug me! Love me! Kiss me! Carry me! And we can't resist, those big blue pleading eyes and arms begging for hugs. Who could? Who could resist you?

I love it. With new people you are now a very shy girl, not saying much and not much wanting to leave our sides. You want to be held and check them out from a fair distance. With people you know well you are affectionate, giving hugs and smiles with abandon. But you aren't like that with anyone but us; only with your parents do you beg for hugs and kisses and carrying and love. And I love it.

I wish I could put that into a bottle and bring it with me everywhere I go for the rest of my life, so in tough times I could pull it out, because I could never be unhappy when I see how much you love me right now. No one could be. If that could be jarred, baby girl, we would have world peace. We are teaching you to say "I love you" right now, and when you tried it first I realized how much you had been trying to say it before only I didn't recognize it--"aploo" you said. "Aploo!" So now I know, and it's mighty sweet. But nothing beats "Mama!" and your outstretched arms.

Aploo too, baby. Always and forever.

Posted by Andrea at 10:13 AM | Comments (9)

The Latest Ever Tuesday Tearjerker: Meet First

Today I am borrowing a page (or line of code) from Yankee Transplant's blog and writing the Latest Ever Tuesday Tearjerker on someone from my past. Probably the only person I'll keep strictly anonymous--I'll call him First.

Rewind the clock about 13 1/2 years: I'm sixteen, and heading off to Germany for a three month exchange (I turned seventeen my first month there). Not that I spoke a whole lot of German. Our German teacher was known for his inneffectiveness; I knew how to say my name, my age, and where I lived, and that was about it. But I was excited about the chance to go somewhere so far away and different on my own for so long.

Then as now, I liked adventure and change.

My host family had different values. They liked conformity and obedience, and were completely gobsmacked at my disrespect for perfect school attendance. In my reasoning, it was silly to expect a sixteen-year-old with highly imperfect German knowledge to regularly attend chemistry and physics classes taught IN GERMAN. I hadn't taken those subjects in english; exactly what was I supposed to get out of sitting there? It was more educational to roam the streets of the small city I was placed in, picking up the culture and language.

Not so, according to my host family and the school. I was actually called down to the principal's office for skipping. Colour me shocked. I skipped classes all the time at home, and no one blinked an eye; I kept pulling down A's, so why would they?

But on one gorgeous German spring day, my highschool friend Sio (she and I were from the same school in Canada, and placed in different cities in Germany; we visited each other fairly regularly) and I went down to Strassburg when I'm sure we were supposed to be doing something else, and spent our time walking up and down the main streets, revelling in the ability to speak english, enjoying the shops and the local atmosphere and architecture, when we noticed two German boys following some distance behind.

We crossed the street; they crossed the street. We went into a store; they waited outside. We went into a park off the main street and sat down on a bench by a large pond; they sat down on the other side of it. They pretended to coax a swan on the pond to carry a note to us; we laughed. Then they tried to get a kid to bring it over. No go. So they left, and Sio and I went to get the note. "I want the brunette," said Sio. "Oh really?" I replied.

I have no recollection of what it said, but while we were reading the note they came back. As they were heading back, I grinned at Sio and said, "You can have the brunette; I want the blond."

Jesus Murphy he was cute. Tall, angular cheekbones with big dark blue eyes, broad shoulders, muscular, medium gold-blond hair cut short, wearing jeans and a leather jacket, and he walked with the hint of a confident swagger. I'd put up his picture, but it would ruin the anonymity factor. You will just have to take my word for it; he was beautiful.

Of course, being young women mindful of our limited German skills and presence in a foreign country, we did the safe and prudent thing; we hopped in their truck and went sightseeing all over the countryside. We saw great little castles tucked in corners in small villages and a few old churches; one I remember had as its distinguishing characteristic the tallest staircase for some distance around. I can remember huffing and puffing climbing it, a great view on top, lots of pictures taken at the summit, then First teasing me about my method of going down the stairs. I stuck my tongue out at him.

He and his friend, The Brunette, were notable in our experience of young German boys especially in one respect: neither of them spoke any english. If you have ever visited Germany, you will know how rare that is. So communication was difficult and possible only thorugh the extensive use of our german-english dictionary. But we had a great time that night, returning to my host family's house very late to find it in a state of mild uproar (I guess they'd come to expect scandalous behaviour of me. I found out some years after I'd returned home that they'd made a desperate long-distance phone call to my parents imploring them to "do something." "What do you want us to do?" they'd replied. "We're in Canada. We can't control her even when we're in the same country." There was one time I'd returned very late from being out with First to find the front door locked, everyone in bed, and I'd forgotten my key. I spent the night outside in the shed, and walked through the kitchen door as soon as someone woke up to open it in the morning. "Where have you been?" my host-mother asked. "I forgot my key so I spent the night in the shed." They never believed me, especially not my host-father, and shortly after this little escapade I got the "we have AIDS in Germany too, you know" talk).

Much against my host family's wishes, I began seeing First. And of course, given the cultural differences, language barriers and class differences (he was a trucker), we did the sensible and natural thing; we fell very quickly in love. I spent all my spare time with him, and some time that really ought not to have been free. I saw almost all of the local countryside and lots of the nearby city with him, far more than I ever would have covered with my host family; and it was great for my German comprehension, since he didn't speak any english and couldn't 'rescue' me that way. Clearly I remember many sunny afternoons spent making out in a local park or a dusty caved-in room of a long-abandoned castle.

It was extremely romantic, of course, and I was 17 and susceptible to that kind of thing. The tragedy of having to cram an entire relationship into six weeks! (I met him halfway through the exchange.) Whatever would I do when I went home? And so on. I'm sure you can see how this would appeal to a very sensitive and angsty teenaged girl.

But it wasn't just that. We genuinely had a great time together. No fights, hardly any disagreements, lots of fun. And he started studying English so he could move to be with me in Canada one day, taking night-classes during the week. He practiced on me all the time. It was terrible, but sweet. Have I mentioned that he was 21? I don't think I did.

By now you're all nodding your heads and saying, "Oh, so that's why you've nicknamed him 'First'!" Yup. Only my daughter is going to read this someday and I'm sure she doesn't want all the gory details, so *ahem* pardon me for not sharing everything. But I will say that still being a devout christian at the time, I repented of my horrible misdeed and vowed never to repeat it. Much to First's chagrin.

There was a time in my last month just before I left when First disappeared. For two weeks I didn't hear from him; then when I did, he was driving a small car instead of his old truck and didn't look in great shape. He told me he'd been in a car accident, in the hospital in a coma. "Look," he said, in German; "Here's where they attached the wires." He pointed to spots on his arm and chest that did look like where someone had removed circular bandages and wires, so I believed him. And for the rest of my stay there it was back to the same--all of our time together, everywhere we get to while I was still there.

I hated the thought of leaving him behind, even though at the time we thought it was temporary.

My last night in Germany I met his sister and her husband; she was the only member of his family I ever met. We spent part of the evening at her house and a very stilted and uncomfortable conversation it was, too.

Later on, late at night at my host family's house, we said our tearful and passionate goodbye's at the front gate. I did not want to let go. We promised to write and call all the time, and he would continue taking english, and then someday we would be together again. He'd get a job in Canada and move. How hard could it be?

But I stood there and held him and cried.

"Don't cry," he said, in German. "It will be all right. Shh. Sh. How do you say 'us'?"

I told him.

In English he said, "We see us soon."

The next day I went home.

And he was as good as his word. I got a letter every week, and a phonecall every Tuesday evening. I don't even want to think about what time it must have been in Germany when he made those calls. I spoke as much German as I could and he spoke as much English as he could. I wrote a bit every day and mailed the letters off once a week. He was as regular as clockwork and our letters and conversations were as close as they'd ever been in Germany. He was still taking english classes, looking into jobs in Canada and the immigration process.

On one of our regular Tuesday phonecalls in July, he told me he was taking a two-week trip to Switzerland. "I'll send you a postcard," he said, "and I'll call you next week."

"I can't wait," I said.

"Don't worry, hey," he said. And then in English. "I love you. We see us again soon."

That was the last I ever heard from him.

What happened?

I don't know.

At the time, I told myself he died. He must have died. What else could explain it? One moment he was there, faithful and loving; the next he was gone.

I continued writing letters and mailing them faithfully for months. "Where are you?" I would write. "If I don't hear from you soon, you'll break my heart. You don't want that on your conscience, do you?" I tried calling his sister but could never get through.

I stopped showering and never left my room, except to check the mailbox--three times a day--just in case. I told anyone who asked how we were doing that he had died. It was the only answer I could bear to be true. I didn't want him dead, but I couldn't stand the thought that he might have abandoned me, just left me hanging like that, no rhyme or reason.

In mid-August, when I started leaving my room again, I was diagnosed with diabetes. I think what happened to First was the trigger.

And now, thirteen years later, what do I think happened?

I have no idea. I think back to our relationship and I still can't believe that he just dumped me like that without any clue or warning sign. It wasn't like him. So maybe he is dead, maybe his motorcycle crashed on the way to Switzerland on the autobahn.

But there are other things I wonder now, too. After six weeks, how well do you know someone?

Well enough to know that he wouldn't just disappear; yes. But well enough to know why he'd disappear; maybe not.

One thing my host-father said to me about First has stuck in my mind. "I know he told you he was born in x, but it can't be true. He has a russian accent." At the time I dismissed it. Why would I care where he was born? There could be any number of explanations. And what do I know of accents in German?

I wonder who he really was? I wonder if he really was a trucker? Maybe he didn't get into a car accident--maybe he was hurt some other way. Could he have been a criminal?

I'll never know. I've tried Googling him but his German name is so common it turns up thousands of matches, and I'm not sure he's the internet type. Besides--let's say he didn't die--by now he would be thirty-four. How much would he have changed in thirteen years? I'm not sure I'd want to know if he's now a staid, married, pot-bellied balding father of two. It's almost better to leave him in my memory as the beautiful boy I met and loved in Germany thirteen years ago.

So you see, Frances, your mother really was an interesting person once upont a time.

And girl-child, I promise that I will try to remember this when you are a teenager: I will try to remember that once upon a time, I took foolish risks, skipped school, did silly things, didn't have my priorities straight, and that somehow everything turned out ok. Here I am, a boring, married, mother with a house in the suburbs and a family sedan and a government job. I will try to remember to trust you and let you take risks, spread your wings and enjoy yourself before you have to grow up.

You know, this is the first time I've ever discussed publicly that maybe he didn't die. Rachel is right. I do keep a lot of things close to my chest.

ETA: I just remembered. Did you know I never told my parents about him, until I was having a fight with my parents about something else a few years later? And that August, I think just before my diagnosis, I actually volunteered to be a leader at a Vacation Bible School. Doesn't that sound like fun? But that's me: Having recently had my heart trampled and being sick with an undiagnosed chronic illness is no reason to give up on one's commitments. That was my definition of "being strong" back then--but I guess it actually was pretty strong, eh?

Posted by Andrea at 8:46 AM | Comments (4)

Daddy's Girl

Oh my god, fifty minutes left and no tearjerker! Crap.

Hmm.

I think I have mentioned previously that I spend some time, on rare occasions, scrapbooking. I have it completely under control, by the way. I'm not an addict. I can stop anytime I want to. Anyway. As I was saying, I scrapbook the odd time. And I may have in my possession the odd scrapbooking magazine. And I may have purchased one or two last week, and I may have spent some time this weekend reading them over while tearing out pages that I liked particularly, and drooling over gadgets that I can't afford. Ahem.

One of the pages I tore out made me cry, and that's why I'm thinking about it now. It was done by a mom (of course) about when her husband and the father of their two young kids was sent away for work for four months. And for the first little while their little girl (the elder of the two, I think) wouldn't say anything to him on the phone except "Yeah" because she was so upset he was gone. Until one day, when out of the blue she said to him, "Daddy, I love you more than Red Kool Aid."

Yes, that made me cry. But isn't it sweet? Don't tell me your heartstrings aren't tugging a little.

So I got to thinking that really, Frances's relationship with her beloved Dada should be a bigger part of this journal than it is. Obviously I'm writing it so it's going to be mostly me, but it shouldn't be all me. If it is, Frances won't like it. She wants her Dada, you know.

Erik is such a great Dad. I don't want to get too much into it because I'm saving this for Father's Day, but it's true. He truly does fifty per cent of the parenting. He loves his little girl way more than Red Kool Aid, and it shows; he'll spend hours playing with her and all her little toys, watching her flip the same pages in the same little books over and over again. He'll hold her hands while she toddles around the house. Every day he takes her to daycare (since it's in his building) and while they walk down to the infant room, he brushes her hair through the leaves of the potted trees that line the hallway, making her laugh. They have silly mealtime games that they won't play with anyone else, mostly consisting of sitting up very tall and opening their mouth really wide, which must be hilarious because it gets them both to laughing every time.

Frances loves all of this. She can't get enough of her Dada. On my bad days I believe she loves him more than me; most days I'm just very glad they are as close as they are.

When he is out of sight, it's all I hear. "Dada!" "Daddy's having a shower, sweetie. Look at this book!" "Dada!" "I know, but he's upstairs. Do you want to play with the ball?" "Dada!" "yes, but he's in the shower, sodapop. Do you want a cookie?" "Dada!" "Oh, I think he's out of the shower now. Do you want to go see Daddy?" (Feet thumping on floor, fists waving, and much bellowing and big smiles ensue.) "Dada!" Then she practically leaps into my arms, her whole body quivering with excitement and joy over going to see Dada.

Dada! Then when she sees him she grins and leans towards him with her little arms open wide as can be for a hug.

I mean, it's been thirty whole minutes, you know. How long can a little girl go without seeing her Daddy?

Frances. LOVES. her Daddy.

It's so wonderful to see--the smiles, hugs and kisses she greets him with if he even leaves the room for a cup of coffee. The sadness and desolation if he goes out to get some wall hooks. The excitement of going out to the Park so Daddy (and Mommy) can push her on the swing. The quiet and contented way she'll settle her whole body into his right arm to watch some enlightening Treehouse television. The way she honks his nose and ruffles his hair and pokes him in the eye (it's done out of love).

She loves her Daddy, all right--more than her favourite bottle filled with warm milk and her rubber duckie all combined. She may only be sixteen months adjusted and a mere fourteen pounds, but she's already figured out that she's won the Dada Lottery. And such a sweet, affectionate little girl she is--she shows it all the time.

When she sees him and a big smile lights up her face and she lifts up her arms for a hug, I'll say, "Awww, Frances sure loves her Dad."

"That's good," he'll say. "I love her too! My favourite little person." And she'll burrow her head in his shoulder; he'll kiss her loudly on the cheek and make her laugh.

"You know, Frances," I'll say, "Before you were born, your father wasn't sure about this whole Daddy business."

"That's true," he'll say. "But you sold me on it, kiddo."

At times like that I can feel the love that binds the three of us together filling up the house and spilling out over the roof, running down the street. I hope it fills her up enough inside for every difficult time to come in her life.

Posted by Andrea at 1:44 PM | Comments (8)

Here We Go Again

My first thought, after we met the genetics counsellor and the skeletal dysplasias expert, was that for the Foremost Expert in Skeletal Dysplasias in Canada (and Switzerland) she is very young. She doesn't look any older than 30 and I don't think it's possible that she's over 40. But the important thing was that she and the counsellor were both very forthright and kind people, who obviously deal with this kind of thing a lot. No mumbling about her "unusual features" or how her eyes are "strange."

We went prepared for the whole day, not knowing what to expect. We brought two snacks, lunch and supper, and a drink each of milk and juice for Frances, plus a whole bag of toys and books, and four clean diapers. Also some baby tylenol because overnight all four of her canine teeth broke through (all four! No wonder she's been having such a hard time sleeping, poor tyke).

As it turns out, we didn't need them.

But we did need the Duck.

The trip down was horrrendous. Over an hour stuck in traffic on the DVP. Then Erik went right to the hospital building, even though genetics is located across the street. We left home at 7:30 and got into the office right at 9:00, registered and sat down to wait.

It wasn't long. Just a few minutes past 9:00 and we were all sitting in a counselling room with lots of chairs, a table and a prominent box of kleenex. Which of course Frances immediately moved to destroy, so we put it out of her reach.

We spent almost an hour talking to them first. They got her medical history so far, asked about things like if we noticed her joints being loose or if she'd ever had to be hospitalized. They looked over her growth measurements (I brought them in) and her photo album (I brought that too--I have some experience with genetics appointments, you see). Then they took all of her measurements. On their scale she's only 65 cm (25 1/2"), but she's 6.5 kg (over 14 lbs). So take a few ounces, lose an inch, I guess. If I could take that weight and put it with the lengths we get at her pediatrician's, she'd be a much more impressive-sounding baby.

One thing I've learned through this whole process is that measuring babies is not a precise science.

This process was not something that Frances enjoyed. We got lots of big heaving sobs and fat tears. It's a good thing we brought that rubber duckie.

And what was the upshot of this whole thing?

.

.

.

.

.

They're not sure.

But they think it might be Three M Syndrome. Mostly because she is very short and her fontanelle is closing slowly.

This condition is very rare. According to my quick web search, only 40 individuals with it have been described worldwide since 1975. And she's not convinced, even so (I guess it's hard to be an expert in something so rare). But there's a group in Paris (France) doing some research on this condition and trying to find the gene, so what they're going to do is send them her information, photo and some of the stored dna sample and see what they think.

I don't know what they'll do if the Paris people decide she's not a Three M Syndrome case. The doctor said she didn't want to "overcall" it because the findings were very subtle; but every other thing she had been thinking of prior to meeting Frances involved some other problem (health- or intellect-wise) which Frances does not have, so she thinks Three M is the most probable bet. But she's not convinced.

It will be months before we find out if they've even decided to accept her blood sample, and it will be years before we hear anything definitive, if ever, because they haven't found the gene yet.

Months. Years.

I hate this.

In the meantime, I don't know what we're going to do. It's not Frances's health. That's not going to be affected in any way. Her final adult height wouldn't be much more than four feet, even with growth hormone treatments, but other than that she should be healthy and happy and all those other kinds of good things. No. This is a much more selfish reason.

The thing is .... Three M Syndrome isn't spontaneous, like achondroplasia or Downs. It doesn't "just happen." It's inherited. So if this is what it is--then Erik and I must both be carriers. And if that's true, then any children we have in future would have a 25% chance of having Three M again. And a 50% chance of being carriers themselves.

And if we're carriers, then our siblings might also be carriers. Their kids might be carriers. My cousin who has a tiny little girl too--she might be a carrier, her daughter might have it.

If it's Three M Syndrome, it could spread out and affect everyone in both of our families.

If it's Three M Syndrome, I don't know if Erik and I will have another baby.

I want them to be wrong this time. So badly.

Posted by Andrea at 12:20 PM | Comments (12)

More on the merry-go-round

I'm going to try out the handy-dandy future publishing tool.

As I'm writing this, it's Friday; but as you're reading it, it should be Tuesday. On Tuesday at 9:00 am, we have our next appointment with the merry-go-round of specialists trying to figure out why Frances is so small and why her fontanelle is closing slowly.

That would be today, if this works.

This person we are meeting with is supposed to be the top expert in Canada (and Switzerland) on genetic bone conditions of all sorts (skeletal dysplasias). Back during the initial ultrasound scare, we were offered a meeting with her on the possible dwarfism diagnoses and turned it down. I don't know anything about what to expect at this appointment, except that we've been told that after seeing Frances she may want to order some tests, and these may include bone scans and x-rays. Frances had an x-ray when she was born to rule out dwarfism conditions (achondroplasia and hypochondroplasia) but she may need something different than what they did then.

At least they should not need any blood tests, since I was told the last time that they would keep it so they could use the same sample again, instead of subjecting her to multiple pokes. I've tried to find the cached version of my pre-site-crash entry on the blood test, but alas, no luck. In a nutshell: I had to pin my 10-lb baby to a gurney so the nurse could take three vials of blood from her scrawny little arm with a regular, adult-sized needle. She was TEN POUNDS!

It was horrible. I keep telling myself that an x-ray or bone scan has got to be better than that, but I guess I'll have to see.

I don't know how long it's going to take, or what information we'll come away with, if any. After her blood test, we were told it would take "a few weeks" to get the results, and it ended up taking four months. (I can't find the cached site entry for actually getting the results, which turned out to be negative, but we got them in October.)

All I know is, I'm expecting to feel like crap.

These appointments are never easy. Some doctor or counsellor poking and prodding her and telling me about her "unusual" features. I tell you, these people need lessons in tact. I don't care what's up with someone's baby, find a way to phrase it that doesn't sound like you think they're ugly. That is the last thing a parent wants to hear. After one of these appointments last year, it took me ages to be able to integrate this experience with the rest of our lives--with going out in public and hearing so many compliments on how beautiful she is. I've decided to believe the public, and doctors be damned. What do they know? It's not like any of their previous diagnoses have been right.

Some of those links are cached by Google pre-site-crash, in case any of you who are new are at all interested in some of the more detailed history we have on this. I can't believe we've been dealing with this in one way or another since November 11, 2003. That's 18 months now. And everyone is sure something is wrong, but no one seems to be able to tell us what, though they all have their own opinions (and every time we go back, their opinions get better and better).

I used to hope that someday we'd visit a doctor and he or she would tell us that it had all been a terrible mistake, and Frances was perfectly normal and healthy. I used to hope that her growth would catch up and prove them all wrong. I used to hope that if it was something, it would be small and fixable. I no longer hope for these things because my hopes keep getting dashed and it's too painful to keep wanting it.

All of the doctors seem certain that there is something going on. We all know she's eating enough and digesting it properly. Her development is quite normal (except for the walking) and by now if this was in any way related to malnourishment, she would be way behind. She is as big as she is capable of being. They also say that her fontanelle is very large for her age, which I suppose is true, since it seems to extend from about mid-skull to around the top of her forehead and is still a few centimetres wide. And they say that her ears are low set (also true--her glasses are always slipping down) and her eyes are prominent (true again). They say her thumbs and big toes are a bit broad. They say that it is very unlikely that all of these things occurred together by chance, although so far no one has been able to pinpoint any genetic condition that could cause all of these things together, without also causing serious health problems or developmental delays. Of course, the low-set ears and prominent eyes and broad fingers/toes are so mild that they readily agree it is well within the bounds of normal. So what they are really concerned about is her fontanelle and her size.

I've spent well over a year now researching this as much as I can. I can't find any known genetic disorders that cause a late-closing fontanelle and slow growth and nothing else. She should be having bone fractures, or heart attacks, or delays, or the whites of her eyes should be blue. Her fingers should go off at strange angles. Her legs should be bowed. Or her limbs should be obviously too short or her forehead too prominent. She shouldn't be able to use words so well, if at all. She should have poor muscle tone. If any of the known genetic disorders were causing her smallness and her open fontanelle, one of these other things should be happening too.

So once upon a time, I hoped that someone would tell me she's normal. Now, I just want closure, and it doesn't look like I'm going to get it. I want someone to give me a long latinate word that I can't pronounce so I can write it down and look it up and find out what's going on; I want to have that word in my back pocket so the next time someone asks why she's so small, I have an answer. I want to be able to use it to look up other parents who might have gone through the same thing, so I can have one person in my life who understands what this is like and can reassure me the way that I've been able to use my experiences to reassure others.

I want closure. I want to know. But it looks pretty likely that I won't. Instead Frances may be one of those people I read about in the medical journals, where the abstracts read "2-year-old subject male standing 28 inches and weighing 21 lbs presenting with unknown syndrome characterized by mild hypoplasia, macrosomia and hyperextension of the joints, possibly connected to FGR genes." I don't want her to be a case study, a medical mystery for students and doctors to pore over, trying to be the next doctor to crack another genetic mystery open for the Good of Mankind. Not that I can stop it, if it's going to happen.

I'm all for medical progress. I just want them to keep their grubby paws off my little girl. I don't want them to progress by turning her from a beautiful, vibrant, fun-loving, sociable little girl into a black-and-white faceless photo in a medical textbook.

We'll see. We'll see we'll see. There's nothing I can do about it, if it's going to happen.

So if I can't have closure, then what I would really like is a competent, caring, knowledgeable doctor. Someone who doesn't make it any worse than it has to be. That's what I want. And if anyone reading this is so motivated I would appreciate a few crossed fingers.

I don't know how long this appointment or any tests might take, so I don't know when I'll be getting back, but I will make a point of posting an update when I can. It might be today, or it might be tomorrow, depending on where my head is. I don't know how likely it is that I'll be going in to work tomorrow, either. We'll see how it goes and how traumatized we all are.

Posted by Andrea at 4:00 AM | Comments (4)

Not quite good enough

Fortunately for me (and all of us), but unfortunately for the blog, it is a bright and sunny day here in Toronto. I am all teared out. I have nothing to be teary about. No tears. Not even a sniffle.

So what follows is pretty lame, as tearjerkers go, but the best I can do under the circumstances:

~~~~~

Sodapop:

(I call her that. Really. Because she's bubbly and sweet. I'll start again.)

Sodapop:

I want the world for you.

I want all things bright and beautiful to land in your lap to delight and enrich you.

I want you to be happy, free and wise. I want you to enjoy the world you find yourself in. I want you to have a good life, full of friends who really care about you, full of love.

But I am a terrible snob: Not just any world will do. Oh no. I want a good world for my baby girl.

I want you to know that you can live a life of meaning to you and make good choices without having those choices constrained by people who think you should be defined by your reproductive organs. I want you to be able to make friends with good people without having the pool of people to choose from narrowed by class or race or ethnicity. I never want you to have to turn on the news to see people dying for some half-baked cause, or other people starving to death because, while there is plenty of food to eat, they can't get any of it.

I want you to be able to love whoever you want to love, whether that's a man or a woman.

I want you to be able to go grocery shopping without worrying about what's in or on your food or whether it contains some newfangled chemical that will shorten your life or give your children cancer (if you choose to have them). I want you to be able to buy clothes without ever having to think of the chain of human suffering it passed through.

I want you to be able to breathe air that won't make you sick or tired. I want you to be able to look out your window and see something worth looking at. I want you never to have to be afraid of walking down the street because the man in the business suit behind you could never turn out to wish you harm; I never want you to have to fear that your body could be turned against you by religious zealots who think you are worth less than what you contain within you.

It's a tall order, bunny. I don't just want riches and toys and fun and games for you, which might be a lot easier to come by. I want a good life in a good world, one of justice, truth and caring. I can't give it to you. I can do my little bit, add my small stone, as Ariel Gore says. I can write my letters and sign cheques and volunteer. I can do all that, and I still know that one day you will learn that there is a lot of senseless pain in this world.

It's bad enough that there's enough we don't cause ourselves, that people get sick or get hurt by accident, that we lose people we love for no good reason. But one day you will learn that some people get off on causing other people hurt, and others don't enjoy it but do it anyway because they think they have to. I don't spend a lot of time thinking about this day but when I do I realize I will have no way to explain it to you, because I don't understand it myself.

It's so easy now, comparatively. When you cry there is almost always something I can do to fix it. Get you a drink or a snack, change your diaper. When there isn't, I can hold you. That is a special kind of mother magic; you cry and I pick you up, secretly enjoying your slight weight in my arms and the feel of your head on my shoulder, rubbing your back and kissing your hair. Then you stop crying. I can ease your pain just by being there, right now. But someday bigger and more existential forms of pain are going to intrude themselves into your world, and I can't fix it. I can't give you that good and perfect world. I wish I could.

We are so lucky, Frances. So lucky. Here we sit, on the top of the pyramid heap, really. With enough money to buy ourselves (or you) a nice house with lots of space for you to play and grow, in a safe neighbourhood with lots of outdoor greenspace and parks, and good schools. We can buy all of the food we need; we don't have to worry about being hungry. After paying the bills there is a little left for fun and toys. You were born into a rich country that will do many things to take care of you, like national health-care and public education. You were born into an english-speaking region, which is an international privilege. You were born near the largest and richest city in this country, which will afford you many opportunities other children will never have. You were born white; you will never suffer from racism. We are so lucky in so many ways; and the thing is, that everyone should be so lucky as to have everything they need and a few things they want and not to suffer from discrimination, but very few people are actually as lucky as that.

I'll continue to do everything I can to give you that good world, baby girl. And in the meantime, I'll always be here with a hug and a shoulder to cry on.

Posted by Andrea at 2:03 PM | Comments (1)

Advice from Mum, Part 1 of 3,067,024

Dear Girl, I am going to preach at you a bit today. I don't do that a whole lot--or at least, I don't think I do. I try not to. What do I know? Anyway, today, I'm going to preach at you a bit.

Generally, a true friend is one who sees you at your worst and still loves you. That doesn't mean you can treat them like crap on the basis that if they really love you they won't mind; part of being a true friend to other people is trying hard to deserve their affection by being a good and true friend in return. But still. Your true friends will put up with a lot of crap and mistakes and you'll come through it all even closer than before. Sometimes they hurt you; sometimes you hurt them; it's all an unfortunate part of being human.

But there are a few things you will probably find you can't get away with. There are some demands that good friends make of each other that are non-negotiable. To some extent it depends on the friendship and the person. Not everyone will have the same Forbidden Zones. If you unknowingly tread on one, all I can say is: kowtow. Apologize quickly, profusely and sincerely.

But there are a few I've found that seem to be nearly universal, and one of them is: Recognize that your friend is ultimately a mystery to you; never assume that you know what she or he is thinking or feeling; and never tell them what to feel. It's all the same thing, really. Because if you see the first, you will see quite quickly why the second and third are such bad ideas.

It may seem to you that you and your friend are as like as two peas in a pod; it may seem to you to be safe to generalize from your own experience onto hers. But every person is an individual, and assuming that your friend has an inner experience similar or identical to your own is only a guarantee that you will get it wrong. And if you assume that you know how to fix what you think is broken in their life, you are pretty likely to hurt them.

Ultimately, you only know what they can share with you, and language only goes so far with sharing. Try to believe that they are doing the best they can, dealing with their lives in a way that makes sense to them.

This goes without saying--it's never a good time to tell someone how to feel. Ultimately every person is a mystery and you don't know, you just don't, what demons they struggle with, what their resources are. Don't assume that they can do what you can.

When I was in my late teens, my cousin died. She was five years old. There was no warning; she wasn't sick; she didn't have an accident; she just keeled over one day while walking upstairs. Her heart stopped. My aunt was destroyed with grief. I try to imagine it, but even now, imagining losing you (as horrible as it is) is nothing like the reality, I know.

I will never forget the sound of my aunt crying and screaming at her baby girl's funeral--"Oh god, not my baby, not my baby, oh god no," over and over again. It still makes me cry. (Like right here, right now.) Wouldn't you think that losing your five-year-old daughter would entitle you to grief?

Not in the minds of some people, no. I will remember and hate for the rest of my life the elderly man who approached my aunt at the reception and said, "Why are you crying? You have two beautiful children!"

Unbelievably, there are in fact people who think it's ok to say something like that to a person who is suffering so badly.

There is lesser stupidity too, of course, like the person who told me when he learned that I'd been diagnosed with diabetes: "Oh well, it could be worse: It could be cancer!" As if I should feel grateful for "only" having been saddled with a lifelong chronic illness that would kill me one day. And what made him think I couldn't still get cancer? I'm not immune. But now, if I get cancer, I will have that *and* the diabetes.

If you assume that you know how someone should feel or is feeling, and tell them, you will get it wrong and hurt them. Possibly very deeply.

Now mind you: and you may find this incredible: at that stage of my life, I was a stoic. My grandparents' funerals--my cousin's funerals--the death of my fiance: I did not cry. I didn't cry about anything at that point in my life, at least not where anyone could see me. I did not complain. I was determinedly chipper about everything in my life (a personality tick that continues today, in person anyway). A lot, or even most people, assumed that because I didn't emote in the way other people emoted, that I didn't feel anything either.

I know, I'm a regular bleeding-heart now. Crying over sappy commercials and hugging you practically to death. But it wasn't that long ago when my only working definition of "strength" was "taking a knife in the gut, then getting up and walking like nothing's wrong."

This stems back to my early childhood. Yes, I am going to talk about your beloved granparents. One thing you must understand is that they were very young, and very different people then. I don't want any of this to affect your view of them at all. But--when I was very young, I was extremely sensitive. Very easily hurt. I cried. A lot. My parents didn't like it very much. I'm not sure why they didn't, but there you have it. If I was lucky, they would call me names over it. If I wasn't lucky, they would hit me. So as I've mentioned before (I think?) there were times when they'd hit me to punish me for something and I'd cry and then they'd hit me for that too and send me to my room. And trust me when I say that when you get punished for crying--you learn not to cry.

You don't learn not to be sad. You just learn not to cry about it.

I internalized the whole shebang, the big messy pile of unexamined assumptions--like visible emotion equals weakness. I was very proud of my ability to seem unmoved by tragedy. I had an immediate reaction of disdain and visceral disgust for anyone who cried where I could see them. Almost any time I displayed visible emotion was quite calculated to elicit a certain reaction. It usually worked. Anyway. Suffice it to say that I was messed up and didn't deal well with emotions at all, and crying in particular.

It has been a long, hard road to unlearn as much of this as I have. It took me around 27 years to figure out that tears do not automatically equal weakness, and that there is more than one definition of strength. It's unfortunately true that it often means not showing the pain you are in, and being functional when you're falling apart. But at least as often, it means taking risks and facing your fears. I think Wicca has been very educational for me in that regard. Learning to face my shadow, to find and look at the parts of myself I'd rather not see, learning to figure out what frightens me and then pursue it (because what scares us has power over us) has most often meant letting myself feel painful and uncomfortable things, and putting myself in difficult places, and trusting people to listen to what I have to say and not despise me. It has been *very* hard but I'm happy to say that in most cases I've been well rewarded.

But.

None of this did anything for the immediate, visceral sense of disgust, shame and even panic on hearing or seeing someone cry.

So you can imagine how hard it was for me--or maybe you can't--when my little beloved baby girl had reflux and spent so much of every day screaming in pain, with only me there to comfort her. I was woefully unequipped to comfort anyone. I've never had much practice. And there was that awful, claustrophobic feeling after a few minutes of your crying that someone must come and stop it now now now now now now now. There was probably an element of anxiety attacks in that. Mostly, though, I was just very scared of crying. I can't describe it. It terrified me. There were times when I so badly wanted to shake you and scream at you to shut up--when all the awful old things my parents said to me roared around in my head like an echo chamber just begging to get out. The only thing that held me back was knowing what it would do to you if I didn't get a grip on myself; and I love you too much to risk that.

I am proud of myself for getting through it, actually. Anywhere near as well as I did. Yes, I fucked up sometimes. Sometimes I did yell at you. Sometimes I told you to shut up, or that I hated you (which was never true, baby girl, and I always apologized right away, even though I knew you were too young to understand either the insult or the apology). A few times I left you inside to scream while I went outside in the show and sat there and cried. Every day I resolved to do better, to try harder; I told myself that I just had to deal with this reaction to crying and quick because you needed me to do a better job than I was doing.

Sometimes I pulled myself together with scotch tape and kitchen twine, so to speak, but whatever works, right? I learned that days that we didn't get out of the house were invariably bad days. It was hard work to get out of the house, because I had to wait a minimum of 45 minutes after a feeding before putting you into a carseat (or you'd throw up everything and scream) and you ate every two hours, so timing was difficult, needless to say; and besides which, putting you down to get dressed and comb my hair was almost impossible. But we did it at least three days a week, and sometimes five, because it was better than the alternative. Often that just meant going to the mall, and you ended up with a lot of really cute clothes that way.

Sometimes I got through it only by counting down the minutes until your father got home. I'd tell myself "just get through this minute" for about three hundred minutes in a row. In those days your father was a shiftworker; he'd leave at 6 in the morning and get home after 8.

Sometimes I got through it by telling myself, over and over again, to appreciate what I had while I had it.

I know all too well that your life now is no guarantee of anything, and I could lose you tomorrow--today, even. So while I made lists in my journal of "things I can do today to stay sane" (playing computer games that use the mouse, or surfing the internet, or reading paperbacks were high on the list--I could do them while Frances slept in one arm, and she was too small to put in the bjorn in those days) often times I would find myself sitting in the chair at the computer, your little bum resting on the nursing pillow on my lap, your sweaty fuzzy head resting just under my collarbone, chest rising and falling with restful sleeping breaths--and I would just sit there, and breath in the scent of your hair, and stroke the skin on your back, and marvel at your small size and total perfection and sheer presence. I would try to memorize that moment, imprint it on my brain for the inevitable day when you scorn holding my hand and are embarassed to be seen with me at the mall.

I can so clearly remember the day you started to hold up your head. You had been crying, and I was beside myself and crying too, so at the end of my rope I'd already thought I'd lost it a few times. I was carrying you up the stairs and talking to you in a broken voice, wondering how I was going to make it until you were four months and the reflux was supposed to get better--and you held up your head, very unsteadily, and looked me right in the eyes.

"Oh my god!" I said. "Look at you! What an amazing baby you are. You're not supposed to be able to do that yet! Look at you! Oh, I'm so proud of you. I love you so much." And on I babbled like that until your father got home and I got you to repeat your amazing feat.

Those pregnancy scares I had were good for something, at least. They reminded me how precious and fragile life is, and how quickly it can disappear. Because the placenta was in front there were entire days sometimes when I couldn't feel you move, and I would be scared that I'd lost you. Intellectually I'd know it was probably the placenta positioning, but there was always that terrible fear that you were gone. Once I was six months pregnant and in Italy--I didn't want to scare my Dad and brother and go to a hospital where I wouldn't understand the language and it was probably nothing anyway, and if it wasn't nothing, I didn't want to find out so far from Erik and home. So I laid in my narrow hotel bed and cried, thinking, "That's ok baby. If you're gone, that's ok. It was so great to know you while you were here. I love you so much. I'm so lucky to have had you and to have known you and to have been your mommy this far."

It can always end tomorrow. Just because I was six months pregnant didn't mean I would give birth--just because I gave birth didn't mean you would see one year--just becuase you've seen one year doesn't mean you'll see five, or that a drunk driver won't end your life when you're walking home from highschool, or you won't go to the wrong club on the wrong night in university, or you won't get cancer when you're 25. There are a million capricious and arbitrary ways for life to end, as I've learned in my own life.

I told myself, over and over again, to appreciate you while I had you because I might lose you tomorrow.

I told myself, over and over again, to be grateful for every moment, even the difficult ones, because they would never come again.

I made lists of all the wonderful and adorable things you were doing that I didn't want to forget.

I took a million pictures of you doing everything charming and sweet that can be thought of, and started your scrapbook.

I made you a scrapbook of the pregnancy for when you are older and want to know where you came from.

I took you into my bed when you couldn't sleep in your crib and bassinette, and while it's true that I didn't get much sleep resting on that wrought-iron torture device, I can remember so many nights where I lay there with your resting beside me, your tiny feet drumming rhythmycally into my stomach in your sleep, stroking your hair and kissing your soft cheek. Your dad moved to the guest room bed for months so you and I could get more sleep there. And while it was hard and I didn't sleep much and it was the right thing to move you to your crib when we did, I missed you so much; I knew those were nights that would never come again, when my sheer presence would enable you to rest.

Those days were very hard, and it's easy to dwell on the difficulties; but a lot of what got me through in one relatively sane piece was reminding myself of how much I had to be grateful for. Was appreciating you for the dimunitive miracle that you are.

So when a good friend (or someone I thought was a friend) told me that I could have made it better by looking on the bright side, she lost a friend. Permanently.

It's possible that she didn't know any of what I wrote here today. But that's the point. You never know, honey bunny. You might think you do, but you don't. Assuming you know what someone's motives are, what they are feeling, or what they should be feeling or doing--and then telling them so--is a recipe for disaster. Just don't. Ask them first. Let them tell you what's going on, if they want to. If they don't, just stay mum. No matter how kindly you mean your advice it can do more damage than you imagine when you act out of ignorance; and there is every chance that you are ignorant.

When you care about someone, try to trust them. Try to believe that they are doing the best they know how, and have already thought of any easy answers you can come up with. Try to believe that their motivations are good. If you can't, ask yourself why you're friends with them, anyway.

That's just my bit of advice to you today, sugarpop. You are such a smart girl that I know you will figure this out on your own, but I'm writing it down anyway. That's what I do. I document my life for future archaeologists, because I just know they will be so interested. Anyway. I love you to bits. Try to remember that the people you love are good people who are doing the best they can, and that you probably don't know them or their lives as well as you think they do; be generous. Give them the benefit of the doubt, and be stingy with advice. I know I'm giving you a bushel of it; I'm your mother; that's my prerogative.

Posted by Andrea at 10:55 AM | Comments (0)

A not-so-teary tearjerker

As I was writing yesterday's entry, I was reminded of how much time I spent thinking about gender-neutral and feminist parenting while I was pregnant. I thought I had a pretty realistic take of how much or little influence I would have, as one person in my child's life arrayed against a whole world full of contradictory messages. But now?

I'm only her mother.

Parenting is so much easier in theory than in practice. Before the baby comes along, you read all these books and watch other people parenting their children; it's not hard to come up with the idea that you've got it all sussed out, or at the very least you'll do better than those slobs with the two screeching brats in the restaurant. Then the baby comes along and you envy those two slobs their ability to go out and have dinner and actually eat something despite the presence of said two shreekers--who have since stopped being brats in your mind. And when it comes to the Big Picture things, like raising your children in a non-sexist, non-racist, non-classist way, instilling values in your children that are not shared by the world around you--it's too easy to feel hopelessly outmatched.

Let's take for granted the current common assumption that half of our personalities are accounted for by genes (nature), and the other half by environment (nurture). What portion of nurture is under my control? If we start off with 50%--then at most I'm half of that, since she also has a father--so 25%. And then there are other relatives she sees regularly--now I'm down to maybe 20%. There's daycare; she's there for 40 hours out of a weekly total of 168, about a quarter. So now my influence is reduced to 15%.

There's television; even her Baby Einstein videos have values. There's other people at the mall. There's her toys, her books, our friends. What percentage am I left with? How much can I really influence the person my daughter will become?

It's so depressing when I look at the mound of toys sitting on the mat in our living room and see that all of the people are white; all of the girls are wearing pink skirts; the boys are holding sports equipment and frogs while the girls are holding kittens and purses. What is this going to teach her about the world? About her options? About what kind of person she is expected to be?

I watch and listen to myself and am amazed at how hard I find this--how easily and automatically "he" slips out as the label for every toy that could be either. Her stuffed toys in particular tend to be called "he" even if I've already made a conscious decision to act as if they're female by giving them a girl's name. I've learned how deeply I've internalized this myself, seeing male as "default" and female as "other."

When she falls over and cries and I rush to pick her up, I wonder--would I go so fast if she were a boy? When I help her climb the stairs or maneouver over my legs or hand her back a toy she pitched across the room, I wonder, would I expect her to do that by herself if she were a boy? My somewhere-under-ten-per-cent of influence--am I using it well?

She is such a feminine little person--not in a girly-girl everything-pink-and-ruffles kind of way, but her innate temperament. So far. A little shy, quiet, willing to sit still, loving, sociable, sweet, gentle. Has she been helped towards that or would she be this way anyway?

And yes, I realize that this is a comparative luxury I have, to worry about whether sexism will clip my daughter's wings rather than break her back. No one is asking me to perform a clitoridectomy on her; no one is telling me to break and mangle her little feet; no one told me that because she was a girl I should leave her on a hillside to die.

One of the most haunting images I saw in Hrdy's Mother Nature was one of a mother in India with her year old twins, one a boy and one a girl. She'd been told to give her milk and time only to the boy, to ensure he thrived, so the girl was given to the grandmother to raise. And side by side with their mother you saw them in this photograph, the boy a plump thriving hefty baby, the way a year-old is supposed to be; the girl barely over 7 lbs, so starved had she been for food and love that she'd hardly grown at all. I remember a story, too, of a woman in one culture who already had many daughters and was pregnant again and gave birth--to another girl. So angry and disappointed she was at being burdened with another girl that she named her "Wants to Die" and waited for it to become a self-fulfilling prophecy. In both cases I was struck not only by the pain and sorrow of these two poor girls treated with so little love and care, no one to cherish them, celebrate their milestones, give them love and smiles--but the sheer strength and resilience that led them to live and grow at all in such an environment. And the stupidity and blindness that insisted still in seeing them as weaker and lesser because they were female, when there was so much evidence otherwise.

So no, no one is asking me to kill or maim my little girl. But that doesn't mean I should be grateful that I am "only" being asked to crush her in smaller ways, and left to wonder whether or not I'm resisting as well as I'd wanted.

Am I failing her?

I don't imagine this is a question unique either to me or to feminist mothers in general. We all come to parenthood with so many ideas of the kinds of families we want to create and the kinds of mothers we want to be. Our intentions are already so high and they get blown out to the stratosphere with the advice of helpful "experts" who will gladly tell you how to be a perfect mother, with no acknowledgement whatsoever that this isn't possible or that anything less is acceptable.

Am I failing her?

In Mother Reader there was an essay from a woman whose first child was born in the days when scheduling of babies was the Advice du Jour. So scheduled her firstborn daughter was, and she wrote of how she would sit and cry while her breasts leaked milk to hear her daughter wail in hunger until the appointed time to eat. She wrote of how her husband abandoned them, and so she had to work, and this was in the days before people understood how important it was to have a good, loving, stimulating environment for young minds--so her daughter was warehoused in a daycare with far too many other babies and children and far too little to do.

She wrote of how she could see the effects of these experiences in her little girl as she grew up; how she felt that, on some fundamental level, she'd failed her, even though it was the best she could do and what the experts said was right at the time.

It's possible to scoff at the Perfect Mother, to tell yourself that all you need is to be Good Enough--but what's Good Enough? The extremes are easy to identify: Abuse and neglect, bad; 100% freshly prepared organic foods and hand-sewn unbleached cotton diapers, unnecessary. Where in between do you draw the line? How do you know when the experts are right, or when they're over the top with unnecessary advice, or when they're advocating something harmful?

It can feel like a Looney Tunes episode where one of the characters runs off a cliff and keeps running on thin air until they make the mistake of looking down and seeing that there's nothing underneath them. I can be confident of what I'm doing and the choices I've made as long as I don't ask myself for evidence.

And then again, who wants to be merely Good Enough? I want to give my daughter everything she needs from me and a little bit extra, so she'll know how much she was loved. I want to give her the tools to examine the world critically, so she'll know when to trust its messages and when to tune them out. I want to give her a love for herself that is strong enough to know when she is being taken advantage of or when someone's love for her isn't real. I want to give her enough strength and resilience to take the blows she gets, get up and keep going. I want to give her a sense of entitlement to her emotions, good and bad; to respect and courtesy from other people. There is so much I want to give her, and I don't know if I have it to give.

Posted by Andrea at 1:53 PM | Comments (2)

How is it Tuesday already?

My Contribution to Poetry Month, and installment #1 of this weeks' Tuesday Tearjerker for Tanya (I know tihs one's going to get you).

And the moral of the story is: Read little lit mags! They have the best stuff sometimes.

Splittings by Shauna Paull

a war-game     splitting the email screen and my sternum

     an infant     made to suckle the hilt of a gun

     press of trigger

                       to imagine

I see the small so soft     the milk flower mouth

recall waking late with tingling breasts     moments before the call of

a daughter

the fretful cradling     urgent limbs and flannel her rooting     pent

with want

the unmistakable     clamp and suck     her whole self

blissed in sugar-milk     skin     slow     of our breathing - I can't



imagine the one who held that other child     for the last time



what of the hot     ripping     away?

what evil     brought his body to this?



perhaps he sleeps on the rubble     that was his country

perhaps under the night broken with stars     there is not room

enough

for him to forgive     not enough to replace



what is ripped from us all

                             to feed and soothe the world

and even though the child may have died     anyway     starved with

her mother

even though we are all dying     thousands     strategically

of hunger     preventable disease

and this poem will do nothing about     any of that

even so     I need to sing this

for what goodness our bodies     can bestow

one to the other

for that tenderest mouth     for trust

and the one whose hands

from Grain magazine, vol. 31 no. 3, winter 2004, p. 96

Posted by Andrea at 6:21 AM | Comments (1)

The Point

Danigirl had an interesting post a few days back--confessions on what she swore she would never do as a mother, then did. It's a very entertaining list.

Of course, I have my own:

1. I would never use a pacifier.

2. I would never buy too many toys or clothes, especially not toys or clothes made by evil companies that use sweatshops (oops--apparently I thought I was going to have time to make clothes? What was I thinking?)

3. I would never yell at her or say anything that might make her think I don't love her. Fortunately this one is getting better, and I haven't lost my temper seriously since well before she could understand anything I said.

4. I would not dress her up for Hallowe'en until she was old enough to understand it.

5. I would not stop listening to my own music. Babies can listen to adult music! Right? Actually I still believe this, but for some reason, it never happens. This probably has more to do with the fact that Erik never turns off the fucking television.

6. I would not expose the baby to television, especially the advertisements (see above). I haven't got a fucking clue what to do about this one. It'll be good when we move and the TV won't be in her playroom anymore. Maybe this will inspire "DH" to turn the bloody thing off once in a while.

7. I would not buy or read parenting manuals or magazines. I caved on this one during the Bad Days. I got over it, though. For now, anyway. Wait until the terrible twos hit--then all bets are off.

That's a fairly comprehensive list. I'm missing a lot, I'm sure, but there you have it. Some of the many things I got wrong about parenthood before I became a parent.

Amazingly, though, there was one thing I got right.

Back in the Way Before Time, when I was just thinking about kids in that theoretical, I-want-a-baby kind of way, I spent a lot of time thinking about whether or not this was a good idea. I have a history with my parents that I am eager not to revisit on a fresh generation, and it was very important to me to reasonably believe that I could be a good mother. As in, not abusive or neglectful.

So I asked myself, for a long time, just why it was I wanted to be a mother anyway.

Was it to pass my extra-valuable genes on to the next generation? No. I'm diabetic and asthmatic. They are not special genes. If anything I have good reasons to adopt--but I didn't want to. Was it to be pregnant and give birth? Partially. I did want to experience that. But on the whole it wasn't a huge motivation.

It wasn't for the fabulous social rewards, great pay, benefits, vacation, or any other perks. As I said, I took this decision very seriously and for years before Erik and I even started trying I read books and articles and talked to women (and listened to them) about what it was like to be a mother. Intellectually I was very well informed about the difficulties. I wa