Monday, January 27, 2014

On Double Negatives

Three days ago, Teeny took eight steps by herself in her walker. She was in the middle of a physical therapy session when it happened. While Johnny and Teeny’s physical therapist were talking and not really paying attention, she stood up, held on to the handles of the gait trainer, and walked halfway across the room. And I missed it, because I was at work.

I got calls from both my spouse and the PT, one during the session, one after. Both were rife with emotion. Near tears. Voices shaking. Her physical therapist said, “It was the most incredible thing!” A second later, she added, “And the whole time she was smiling and asking for mama, mama.” I wasn’t sure if she added that just to make me feel better about not being there, but I didn’t care. My kid took steps in the hated, dreaded walker, by herself!

You’ve gotten a lot of good news about Teeny lately. A lot.  But you’re finding it’s hard to be happy, to let it all register. You think you really ought to write a blog entry about it all but you just don’t. It’s one thing to write blog after blog about how horrible everything is and how hard it is to have a special needs kid, all the terrible things you think and how you learn so much about yourself when you’re challenged all the time. But after two years of that, you get used to being this weird sort of martyr, thinking that everything is so hard and no one else really gets it. Despite this, you are blissfully ignorant of your behavior and you tend to think of yourself as a happy person who just hasn’t gotten around to updating the world with your good news. Recently someone you know tells you that you have a chip on your shoulder. “You know that, don’t you?” he says, not unkindly. You start to offer blustery excuses, explaining how hard your life is and how no one understands. But then you stop mid-sentence and look at the person across the table from you. The guy looking back at you has more responsibility on his shoulders than you ever will: work stuff, family stuff. Big stuff that he has shared with you over the few years you’ve known him. And yet he’s taking the time to gently offer you this very valuable information about yourself that no one else has bothered to. You shut your mouth. He was right. It was time for an attitude adjustment.

So you walk around for a couple weeks confused and not knowing where to begin. You alternate feeling lost, unsure of how to let go of your crankypants, and still feeling justified in wearing them because no one else knows how rough you really have it. But then you turn around one day and the kid people thought might never talk is saying well over 100 words and phrases and okay, she’s still behind in speech but she’s really not that behind. She says phrases like I love you and thank you and on top and let’s go and she says them all correctly and she even has one phrase in Arabic, habibi, which means “my queen” or “my beloved” and it’s what the Egyptian garage attendants in your building call her. She calls their names and says habibi every time she sees them and they smile miles wide and hold their arms out for her. And yes, they love our Bee too, but as they twirl and dance with Teeny to the car and she’s laughing and saying habibi, it dawns on you that Teeny is very special to a lot of people, and many of them don’t even know there’s anything “wrong” with her.

And her first semester of preschool comes to an end and you get a glowing and positive report from her teachers about how playful and inquisitive she is and it’s 8 pages of cute stories from the first half of the year. It’s full of compliments and hope and it brings tears to your eyes because it’s the first document you ever read about this kid that wasn’t a laundry list of things she can’t do and problems she has and will likely have for the rest of her life. So you make a PDF of it and send it to every relative and family friend you can think of because you’re so proud.

And then it’s the holidays and you take her on vacation and you forget the bath seat she needs because she falls over in the bathtub and she’s dirty so you stick her in the tub anyway and it turns out she’s totally fine without it. While you weren’t looking, she got really good at balancing, even in the water, even with slippery soap, even when her sister is grabbing the slippery soap away from her. And it turns out she loves the water and loves to splash and flip-flop all over and she’s squealing with delight and you’re soaking wet and you’re smiling too because she’s so damn cute, like a little fish.
At the vacation house she finds her favorite spots. One is the living room window where she waits and watches for people coming and going all day. She waits there for you when you go on your daily runs and when she spots you coming back she calls Mama! Mama! and because she’s been watching and waiting patiently, she’s the first one you scoop up for a kiss and a hug when you come in, breathless and sweaty. The other spot is the base of the staircase, which she loves to climb up, over and over. At first you are annoyed because it takes her foreverrrr to get up the nine or ten stairs and you have to sit there and spot her so if she tumbles she doesn’t break her neck but then it dawns on you that this is basically an impromptu PT session so you let her do it and you’re speechless when she reaches the top and she turns herself around and starts to lower herself down backwards, one step at a time. No one could possibly have taught her to go down stairs alone since you don’t have any stairs in your apartment where she gets PT four times a week. You know her therapist did teach her to get in and out of her chair and on and off the couch, but Teeny was the one who put together what she learned there with what she’s trying to do now. So with minimal help from you, she gets down this steep flight of stairs as easily as she crawled up them. Over and over and over. And we’re at the house for seven days and every single night she sleeps in a bed and she never falls out, not once, and you realize that you might be able to get those bunk beds for the girls’ tiny shared room you’ve been dreaming about after all.

And then it’s a new year and you’re home and life is back to normal. She has no living room window to stand at so she starts to wait for you in the hallway of the building. Soon work starts up and school starts up and you hardly ever see her, just like before and everything’s exactly the way it was only you donate the bath seat. And while you’re at it, you pack up piles of baby things that even Teeny has outgrown and you come across the little Baby Bjorn toilet seat you used with Bee and you put it on the toilet and you take off Teeny’s diaper and you stick her on the toilet and she pees. And you try it again a few days later. And she pees again. And she’s suddenly saying “potty” and “pee” and when she does it a third time, you’re not na├»ve enough to think she really knows how to hold it or tell you she has to go, but you’re starting to think that someday she might actually be toilet trained.

You don’t really let these little victories add up until one morning you look at the calendar and it’s January 8th and you have an appointment with her developmental pediatrician. You vaguely remember making that appointment back in September – it’s not easy to get appointments with one of the only developmental pediatricians in the whole city who takes insurance – and because you forgot about the appointment and it’s at 8 am and 8 degrees outside, you rush up there with Teeny bundled in the baby carrier, and you’re vaguely annoyed because you have so much work to catch up on from over the holidays and she’s vaguely annoyed because she’s two and a half and really doesn’t fit in the baby carrier anymore and would much rather walk only she can’t walk, which annoys her even more. You’re on your own for this appointment while your husband takes Bee to school. While you wait to be called, you walk around the waiting room bouncing her in the baby carrier she’s way too small for and you’re pointing at flowers and clocks and papers and posters and she’s repeating flower and clock and paper and poster.

Then you’re called and the doctor, a sweet older lady, makes small talk and watches her play and scribbles a bunch of notes and asks a lot of questions about what Teeny can and can’t do. She watches Teeny move, draw, throw, grab, pull open, push closed, pile on top, knock down, take apart and generally go from delighted to frustrated and back. And you’re sweating because it’s hot in there and you’re dressed for 8 degrees and also because you’re nervous. You’re nervous because developmental  pediatricians look at social skills, emotional levels and cognitive ability. They’re the ones who hold your kid’s whole future in their hands, in a way. The physiatrist can say “she will walk someday!” and the neurologist can say “neuroplasticity is a great thing” but they can’t promise anything because they don’t really know. What you really want to hear is good news from the developmental pediatrician because they measure her abilities to the range for her current age and in a way that’s more real than what the other specialists say because they speak in a much more open-ended way. Last time you saw this doctor, about six or eight months earlier, she had no answers. As an aside, you got some tentatively good news. “Well, she’s definitely not on the spectrum,” she offered brightly, explaining that while it was way too soon to make any predictions about Teeny’s cognitive abilities, she could see that she was very interactive, made eye contact, pointed at everything and was generally very receptive to other people.  You’re definitely grateful that your kid isn’t autistic on top of everything else but this is just not enough to reassure you that all will be well. What if she’s, you know – and here your voice drops to a whisper because you know what you’re about to say is the wrong term but you’re new to special needs so you don’t know what the right term is – retarded? And the doctor has no answers for you except to supply you with the correct term, which is developmentally disabled, and it’s a term you hate just as much and you hope you never hear it again, especially in reference to your kid.

So here you are months and months later and you’re sweating waiting for what she’s going to say about developmental disability this time. And when her verdict comes you don’t even realize what she’s saying because she’s speaking in puzzles. She says, “Well, I can’t say for sure that she won’t catch up completely.” Your mind spins with double negatives and you add it all up. “You mean you think she has a chance at being cognitively normal?” you ask, incredulous. “Yes,” she says simply. She explains that while she is still behind in the way she plays and even more behind in many other ways, she is much closer to where she should be now than she was to where she was supposed to be the last time she examined her. That means the gap is slowly closing; Teeny is making a lot of progress. Of course she added that she can’t make any promises, it’s still very early, blah blah blah, but in another series of double negatives, she assures me that she can’t say definitively that Teeny won’t continue to close the gap and get where she needs to be. And she reminds you that she still is very behind and that she has a long way to go and she offers you a series of recommendations about how to play with her, what she needs to learn, what you should be working on at home, but she adds that you are doing all the right things. You gather your eight million layers of clothing, scoop up your kid who is currently attempting escape and crawling down the hall, and, very anticlimactically, you leave and stop to grab coffee on your way to drop her at school, since you’re already late.

It took me three weeks to realize that was the best news we’d gotten in over a year. I mean, I knew it was good: on my way to drop Teeny at school, I called my spouse and told him. I called my mother. When we arrived, I told her preschool teacher, and later I mentioned it to a friend in a voicemail. But then I kind of let myself forget about it. I mean, what if we get our hopes up and she’s wrong? What if we get complacent and stop pushing her and it’s our fault that she doesn’t catch up completely? Earlier this week she had another Botox treatment, this time with no anesthesia whatsoever. It was hard to say who was more traumatized, me or her. I was visibly upset before we even started so they told me to wait in the hallway. I settled myself on the couch in the waiting area and prepared for an hour of catching up on work emails, surfing Facebook, listening to voicemails. A few minutes later, I heard her small voice wailing from down the hall, behind the closed door of the exam room I’d just left. “No no no no no!” I raced back in and found her on her belly, being held down by three people as the fourth injected her repeatedly behind her knees, in her thighs. She saw me. “Mama!” she screamed. I threw myself down beside her and looked into her eyes and told her I was there, I was with her. I kissed her forehead and brushed her hair out of her eyes. “I’m here, sweetie, and I love you.”

“No no no no, Mama, no no,” she blubbered again and again. How much longer would this take? But then it was over. While I got her dressed, I promised her vegan ice cream. “Ah – meem!” she repeated happily, nodding her head vigorously. We chatted with the physiatrist, who asked what our goals were for this Botox round. I explained that Teeny was plateauing and I was ready for her to start making progress again. She had been cruising tentatively for months and I was disappointed that she wasn’t moving faster. The doctor suggested a conservative goal of increased flexibility and strength; instead of scissoring her right leg 100% of the time when she stepped, she would only scissor 50% of the time.

But three days later she’s taking her own steps in the walker and I realize how wrong I was. Sure, the Botox was helping. But plateau? This kid was just getting warmed up. I count on my fingers and I realize that there were a lot of signs leading up to this moment.  But because this journey has been so hard for so long, like the developmental pediatrician, I’m only comfortable thinking about Teeny’s progress in double negatives. Okay, I tell myself. There’s probably no reason for me to think Dr. G is not right. Right?

The truth is, we still don’t know. It could very well be that Teeny doesn’t fully catch up physically or cognitively. But it could very well be that she does. We do know that it’s not time to slow down the aggressive approach and it may never be. The developmental pediatrician told us we were doing the right things for her and I was glad to hear it because sometimes I wonder. She’s a two year old kid and she has almost zero unstructured play time. She has no time for playdates. She’s almost always working hard.

As for me, I thought a lot about what it meant to have a chip on my shoulder and how I spend a lot of time comparing myself to other people and my life to theirs. I don’t let myself compare Teeny to other kids her age anymore so why would I think this is a good thing to do for me?  These days, Teeny loves certain books almost inexplicably: most recently she has adopted my 22 year old copy of How To Be A Grouch that an ex-girlfriend gave me (complete with inscription reading “For Aimee, not that you need help from this book!”). She carries it around, “reads” it aloud, talks to Oscar, and hugs his picture. I don’t understand why she loves this book so much. She has half a dozen other Sesame Street books that she ignores, and I’ve had this book so long I’d basically forgotten it, so she must have dug it out of some pile on her own. It’s also worth mentioning that Teeny is the least grouch-like creature on the planet. But like the book’s inscription says, she’s got a class-A grouch in her life; sadly, Oscar might seem more familiar to her than I care to admit. I’m working on it though…. and she’s clearly working too.

Sunday, December 1, 2013

Ladybug Girl and the Birds and the Bees

Somehow, we have an almost-four-year-old. Bee has been excited about her fourth birthday since the summer, and every day she adds to the list of things she's decided she wants. "The List" is the greatest thing ever: she will beg and beg for some outlandish thing I would never buy in a million years, I tell her we'll add it to the list, and somehow she is magically appeased. I hope this works for years! She fantasizes for what feels like hours about the party she will have, the cake she will have, the friends who will come, and of course, all the presents. It's so wildly narcissistic but, at three, is she supposed to know a world other than one that revolves around her?

At night I scrunch myself into a ball next to her in her toddler bed and play with her hair and whisper stories about Ladybug Girl as she falls asleep. Ladybug Girl is Bee's alter ego, or so it seems. We've been talking about Ladybug Girl's fourth birthday for weeks. I can tell you all about it: it was at Minnie Mouse's house and they baked a cake and Ladybug Girl's best present was wings she could fly with. How can I possibly top that in February when Bee finally turns four?

Ladybug Girl is an interesting kid. She has a backpack and a Hello Kitty dress and her best friend is Minnie Mouse. She has two mamas and two daddies and thirty brothers and sisters. We work through a lot of Bee's questions and issues via Ladybug Girl and though I sometimes dread the pressure I feel to be creative, Bee clearly looks forward to these stories every night. She clings to me with one hand (and picks her nose with the other, to my disgust) and insists that I put my head down on her pillow while we talk. "More Ladybug Girl story!" she will whine when I try to extricate myself without breaking the flimsy bed not meant to hold my weight. "More, Mama!"

Ladybug Girl gives us both the freedom to talk about things that, even at three, Bee knows are hard to talk about.

A few weeks ago, we had parent-teacher conferences at Bee's school. Parent-teacher conferences for a three-year-old? I wondered that same thing last year when she was two, and I was surprised at what a serious thing it was. The teachers had notes on her and they handed me samples of her artwork, photos of her with her classmates, and so on. And of course they loved her. Who wouldn't? So this year, I went in expecting pretty much what happened last year: her teachers marveling that she's so smart, she's so cute, we love her so much. And I did get that, but I also got a very hesitant report from the teachers about Bee's use of language.

"She said 'my mama has giant nipples,' one told me. My initial reaction was to assure them that I do not, in fact, have giant nipples, although compared to her own I can see why Bee would think I do. Instead I furrowed my brow. Is this a problem? I wondered. Bee nursed well into my second pregnancy and then she watched me nurse her sister for more than two years. Teeny still nurses from time to time. So of course Bee has seen my nipples. But so what? She knows what they are and what they're for. She knows one day hers will grow and that maybe she too will nurse a baby. I taught her to say "milk" for nursing. She doesn't say "nana" or any of the other words I've heard kids use. She doesn't say boobs. She says breasts, nipples, nurse, milk. We take showers together. She sees my naked body, her sister's and occasionally her father's too, and she likes her own naked body so much that she will often declare, "I want to be naked!" and strip right down to her birthday suit. She doesn't know that she shouldn't say "nipples" in school.

I love Bee's school. I love her teachers, I love her classmates. I could not be happier with her whole preschool experience. So sitting in a tiny chair in her classroom having my nipples described to me, I tried not to be defensive. Ultimately, I didn't say anything other than, well, I am trying to teach her to love her body and bodies in general. Shouldn't she grow up to be a confident woman who loves her own body?

But there was more. One of the other teachers turned bright pink and took a deep breath. Apparently, Bee also remarked offhandedly one day that she could see this teacher's vagina. Which startled the teacher into thinking she had a hole in her pants or was otherwise exposing herself. But no. Bee is three. When she's standing and a grown up woman is sitting, she's at vagina height. So is that really so weird?

At that point I really wasn't sure what to say. Why were they telling me this? They launched into a compliment, saying that Bee is very verbal and expressive for her age. But I was still stuck on nipples and vagina. I explained that as far as I could tell, Bee says vagina the same way she says elbow. She knows her vagina is for her alone and that nobody should ever touch it other than her. But she doesn't know it's a secret word that she shouldn't say. After all, she knows about half the population has one. She knows what the other half of the population has, too. I also said that it was very important to me that my daughters grow up not having the body dysmorphia and self-loathing that I have. I have spent way too much of my life standing in front of the mirror hating what I see, praying to wake up in a different body, thinking I am so fat that no one should ever talk to me. (Yes, really.) That kind of craziness is debilitating and shameful and I don't want to pass it on to my children. So I work to normalize their curiosity and to address things directly. I don't tell them not to say certain words. I don't force them to eat when they don't want to. I don't deprive them of occasional sweets. I tell Bee she can pick her nose or touch her body when she's alone in the bathroom or in her room (not that that stops her from picking her nose most of the time, though I do insist she wipe her boogies into a tissue so I don't find them dried and stuck all over the apartment). I let her wear what she wants to wear. She picks what she feels beautiful in, and as long as she picks something appropriate for the weather, I let her wear it even if I hate what she chooses. I encourage my kids to listen to their bodies and to love them no matter what they say. And I worry all the time that I'm not doing the right thing.

In the end, I chose not to say anything to Bee about what her teachers told me. I debated it, and then decided I didn't want her to feel shame for using the correct words and for being curious and expressive. So I let it go and I worried for days whether I made the right choice.

For me, this is all pretty uncomfortable stuff. I have a kid who likes to be naked when I hate, hate, hate to be naked because I feel fat and ugly and exposed. She likes to talk about her vagina and nipples (and apparently everyone else's too) when I've been conditioned not to go there. She stares at the page in Everybody Poops towards the end where the animals and the boy are pooping. "Look Mama! You can see right where the poop comes out!" And every time she points right at that awful picture, I want to turn away from it; I don't want to look at anyone pooping!  She giggles and owns it when she farts. "Mama, I farted!" she will say, cracking herself up, whereas I would rather absurdly blame the cats than admit it was me. And then, "aren't I beautiful, Mama?" she will ask when she's all pink and princessed out. I tell her she is, and that she's beautiful no matter what she wears because she's beautiful on the inside.

Now she's interested in how bodies make babies. At a friend's recommendation we stumbled upon the perfect book, called What Makes A Baby, that has given her all the facts and none of the "when the mommy and the daddy love each other very much..." nonsense that dominated the books of my generation. This book is free of gender, of stereotype, of assumptions. It is important to us that we raise children who are broadly aware that every body is different and every family is different and every kid has a different story. This is one way Bee is starting to understand that. Now she has language for how babies are made factually; she knows egg, sperm, uterus. She knows a lot of different people were waiting for her to be born, and that those people are her family. She also knows she came out of a hole cut in the belly of our family's uterus-haver (whom she knows was me) in a hospital while her sister came out of the vagina of the very same uterus-haver in the bathtub at home, and both were completely acceptable ways for babies to be born. Now I am fully prepared for her to drop those words in school as casually as she did vagina and nipples.

A couple weeks ago Bee's sister Teeny had an appointment to see her physiatrist. If you're a kid seeing this doctor, you definitely have some kind of physical disability. The waiting room is often full of families that look a lot like ours. Sometimes there are children who have much more severe issues than Teeny does, and on this visit there was a little boy sitting in an adaptive wheelchair. He was maybe eleven or twelve, and his mother was feeding him. He could not feed himself, nor speak, nor walk. Johnny was getting Teeny measured for a new kind of leg brace, and I was sitting with Bee waiting when I caught her staring at this boy. This was the first time I found myself in a situation like this and I was not at all sure what to do.

She inched closer to him, completely rapt. I got brave and faced it head on. "Bee? Are you curious about this boy?" She nodded shyly. "Does he remind you at all of Teeny? Do you have questions you want to ask me or his mama?"

His mother stopped feeding him for a moment and looked at us. I was terrified that she might snap at me or at my kid, but instead she smiled and beckoned us even closer. "We love questions, don't we Billy? It's fine for you to ask anything you like, or you can just look as Billy eats."

In that moment, I loved that woman. Looking at her son and thinking about my other daughter, I could only imagine a tiny bit of what her life must be like, and yet she had the time, the patience and the emotional maturity to address my daughter's needs even while tending to her son. And I loved her for that. But Bee didn't want to ask any questions. She was frozen; she wanted to stare. I was embarrassed, but I also remembered how hard it was not to stare when I was a little kid. I tried to think about what might be going through her head. I pulled her to me and I started talking to her quietly about the boy, about her sister, about how everyone's body is different. That we are all differently-abled and we can do different things by ourselves or with help and that it's all normal. That seemed to snap her out of her silence. She started talking a little about how she can walk by herself but her sister can't, and how some bodies need more help than others, but then she lapsed into silence.

She forgot about Billy long enough to decide she needed to pee, and after that, Teeny was finished and it was time to leave. Once we were back in the car, I asked her about the boy again and if she could describe what she was feeling. She couldn't. She didn't have the words to explain what she experienced, but she seemed relieved to hear her curiosity was normal. I told her it was okay to be interested in that boy, and then I dropped it until later that night, when we were in the dark talking about Ladybug Girl. I tried to bring it up again, and to my surprise, she was ready.

"Hey, Mama?" she asked me suddenly. "Did you know that Ladybug Girl has a little sister who can't walk?"

"She does?" I acted shocked.

"Yeah, but Mama!" she said, suddenly awake and excited. "Her name is Teeny. And she can't walk by herself. But Mama, she can fly!"

Sunday, November 10, 2013

Silver Linings

It's mid-November. A few weeks ago, while the country was busy Halloweening and our city was remembering a terrible and devastating hurricane that blew through the area the year before, I was having trouble focusing. I didn't call my in-laws to see how they were feeling as they reflected on the past year of displacement and rebuilding a house with their bare hands. I forgot to buy pumpkins for carving and, worse, I completely spaced on the night our building did trick-or-treating and had nothing to give out. I kept getting home from work and falling asleep in my clothes as soon as the girls went down. I just wasn't all there.

It took a while for me to realize why. We were approaching our own anniversary.

In September of 2012, we finally convinced our pediatrician that Teeny needed to be evaluated. By mid-October we'd had four evaluations and very little concrete information. While we waited for Early Intervention to get going, we started Teeny in physical therapy. She was barely a year old and she wasn't crawling. She wasn't talking. She wasn't even sitting. Yet, everyone who saw her told us how cute she was and how sure they were that every baby goes at their own pace and some don't even crawl, and any day now she'll just get up and start walking, you'll see. She's fine!

But then someone said the word "neurologist" so two weeks later we had seen one and two days after that we were getting an MRI and then two days after that, everything stopped. And meanwhile the world around us was in shambles. My husband's family, living smack in the middle of the destruction of Hurricane Sandy, homeless. My normal routine at work, on hold so we could service the many pet-owning residents of affected areas. My friends, at best inconvenienced and at worst displaced for weeks or months. One close friend had to leave her flooded apartment as well as her job and the rest of her life to fly to St. Louis to live with her mother for six weeks, all with a newborn baby. Everyone was affected. And I was there for no one at all because I was too busy feeling sorry for myself and mourning the future I was supposed to have.

The weeks that followed are still a blur. Yes, I got busy with phone calls, appointments, research. I read books and neurology journals. I located experts, I wore people down. I'm a fixer; I got her the services she needed and more. But late at night, Johnny and I cried. We asked each other difficult questions and the answers were often just too hard to say out loud. But one night in December of last year, I said the most awful, terrible, no-good thing I've ever said in my whole life. I will tell you what it is because I want other people to glimpse into this window and see just a fraction of the pain we were experiencing.

I said: "If she were our cat, I would probably have her euthanized."

You can't just un-say something like that. I swallowed hard. Johnny just looked at me, his eyes big and his mouth silent. My cheeks got hot with shame. You were not supposed to say these kinds of things about your baby. These days I was sad all the time. I was very worried that the kind of depression I experienced in my teens would return. I was afraid of my feelings, scared of not being able to fix it, and truly terrified about maybe not loving my own baby.

I will be honest with you. Most of the time, I'm not very nice to myself. I waste a lot of time agonizing and beating myself up. It's crazy stuff. I sometimes agonize over things I've said or written for hours afterwards. I feel my face get red and and my stomach gets knotty and then, wishing I'd never said anything in the first place, I want to say a thousand opposite things right away, maybe to explain myself more fully or maybe to undo what can't be undone. Which of course starts the insanity in my head all over again, because no matter what I do I know it's too late and I'm furious that I opened my mouth again and when will I ever learn anyway? Crazy, I'm telling you. This is the tornado I found myself in as 2012 drew to a close.

But in the past year, the universe made a liar out of me.

First of all, animal person that I am, I somehow didn't know then that there are actually lots and lots of cats with cerebellar hypoplasia. If you Google the disorder, you will in fact find far more on the internet about kitties with CH than people. It turned out that I had friends with CH cats. I'd met them and pet them and totally loved on them like any other cat. A little wobbly, they lived pretty normal lives for the most part. So a cat with a new diagnosis of CH is definitely not a candidate for euthanasia. And neither was Teeny.

Within weeks, she sat. Shortly after that, she bunny-hopped and by January or February she was crawling for real. She showed us that she was learning. She grew stronger, more steady. With the help of our friends and family, we did a test that told us her issues were static, not progressive or degenerative. We began to have hope and clearly so did she. She learned to feed herself. She pulled herself to a stand and learned to crawl up stairs. She began to say a few words. She was doing so many great things that we got brave, thinking walking was right around the corner, and we applied for part-time mainstream preschool. Many nights I lay awake wondering what the hell we were thinking there. We had committed thousands of dollars and she might not even last a day. I had no idea what I was doing. I was deeply in my own head, involved in every mid-life crisis escapist fantasy, wondering how the hell this all happened and what the hell I was going to do. I spent the better part of the summer hurting; lonely and sad and feeling misunderstood by everyone I loved or thought I loved. I couldn't even tell the difference. I had created this busy life construct that looked on the outside like a bourgeois tower of success, but inside it I was a ball of nerves and confusion.

Then one night I lay in bed, awake in the dark, flipping through pictures of Teeny on my phone, and I realized that something magical had happened. I loved her. I didn't just love her because she was my baby and I had to. I didn't just love her because she was cute and blonde and had big blue eyes like her dad. I didn't love her despite her needs. I had fallen in love with the baby she already was. I couldn't even see the baby she was supposed to be anymore. I couldn't see the cerebellar hypoplasia, the cerebral palsy. I just saw Teeny. And I loved her with all my heart for who she was. And I thought about what I said almost a year before and felt my cheeks getting hot with shame again, but I swallowed hard again and as I did, this time I breathed out and I felt the shame leave me. Yes, I had said some awful things. But I had just been dealt a devastating blow that would change my life forever. At that moment, I barely knew my own name. A year later, Humpty Dumpty was back together.

The next morning I was up early with Bee, reading. Soon we heard baby noises through the monitor and I watched Johnny as he went into the girls' room. He came out with a smiling Teeny in his arms. He was nuzzling her belly and neck with kisses and she was howling with giggles. They were both glowing with love and I reached for her and she clung to my neck and murmured "Mama." She patted my back gently and I held her tight. Johnny scooped Bee up and came over to us. "Family sandwich!" he cried, and they piled on us. Bee jumped into my arms and suddenly I had both my girls close to my heart. As I held them as tight as I could, Johnny wrapped his arms around all three of us. We were a family.

Yes, Teeny had made so much incredible progress in that year. But truthfully, her mama made even more.

Well, she didn't start walking, but we sent her to school anyway. We worried for the entire nine months between paying the deposit and her first day, and by worry I mean we debated, argued, and talked about pulling her out before she ever went in. Her first day came. I hadn't slept the night before and I was so nervous that morning that I was actually sick. Yet within fifteen minutes, we knew she was in the right place. And in the two months since she started, she has become a different child. We sent a very delayed special needs baby to her first day of preschool and that same day we picked up an engaged, hard-working child.

She talks more and more every day. She repeats everything we say. The way her language is developing is wonky just like her wonky cerebellum. She has probably close to 100 words she can use appropriately but she just can't string two together. But she gets the sentiments: she will shake her head no and in a cranky and determined voice, say "bath." This means of course "I don't want to take a bath." She will wave wildly and say "mama," meaning "Hi Mama!"

Her words are not all nouns. She has verbs too like eat, and prepositions like in and on and "OUT!!", and even very age appropriate adjectives like colors, which really makes me proud. She makes the right noises for ducks, cows, dogs, sheep, chickens, and other animals. If you ask her if she wants to brush her teeth, she nods and heads for the bathroom. She waves hello and goodbye, knows how to clean her face, blow her nose, blow bubbles, put a pacifier in her baby's mouth. She knows all her body parts too and while she lags behind during Head, Shoulders, Knees, and Toes, she tries her best to keep up. When she sits in w-sit (her PT's worst nightmare), you can say "Teeny, fix your legs!" and she will pull them out from under her, one at a time, until she's sitting on her tush with her legs stuck out in front of her. "Leck," she says, and points at one leg, and then the other. "Leck."

She is VERY attached to her daddy. Where Bee is and always has been all about Mama, Mama, Mama, Teeny will notice every time Johnny leaves a room and call after him, but she can't say "come back."  "Daddy?" she will call instead, pointing at the door. "Daddeee. Dad-deeeee! Back!"  While she can't say her big sister's first name, she can sure say Bee, so she has taken to calling her that. "Bee! Bee! Bee!" She loves her sister and wants her approval all the time. They play together; dressing up, bouncing on the bed, talking on the phone, stacking blocks, grabbing things from each other. She names toys, even though sometimes we don't understand her words or her logic. For example, her great-aunt gave her a handmade doll as a gift and she promptly named her something that to us sounds like "car keys." Puzzled but tickled, we christened this doll Sally Carkeys. She makes us all laugh with her weird pronunication of words like pasta "ba-da" and water "wa-ga."

These days her favorite word is a pretty clear one: NO. It's a very physical word: she scrunches up her face and furrows her brow and shakes her head. Her whole body says no right along with her. I don't even know what to say about that except I think that is pretty normal for a two-year-old. If there were going to be one milestone she was ever going to reach in a timely way, this is not the one I'd pick, but at least she's got the cognitive ability to make decisions and know what she doesn't want. Silver lining maybe, but I'll take it.

Monday, September 23, 2013

A Birthday Letter to Teeny

To my second daughter, on your second birthday:

For weeks now I've been packing up the baby clothes that don't fit you, the black and white infant toys you no longer bother with. Your first haircut is behind you. You're all but weaned.  You are tall and slim. Your second birthday is tomorrow and you are now a little girl.

Two years ago tomorrow, your arrival completed our family. I had always wanted two daughters, so I waited for you with excited anticipation. But you didn't want to wait! You were born, a week before your due date, at home surrounded by people who love you. There were no wires, no lights, no machines. Just you and me, in the water in the dim light, with your daddy next to us and your sister Bee sound asleep. Our midwife and her assistant gave us lots of space and made it as beautiful an experience as possible. And beautiful it was, because you were beautiful.

It is hard to live in the shadow of a big sister, but you don't let that slow you down a bit. You are your own person with your own wants and needs. You are a sweet and gentle child and you give the best hugs I've ever gotten. You love music, you love to dance and bounce and play. You are alternately easygoing and extremely opinionated. You are a toddler in almost every way: you are busy with pretend play; you like textures like sand and water and rough surfaces; when I drop you at school, you usually wave me away, more interested in the light table or painting at school than saying goodbye to Mama. And of course, while 95% of the time you are happy and mild mannered, you can also throw a terrible-twos tantrum with the best of 'em.

Your words are coming; this morning in the car on the way to school, you said "bus" without any prompting from anyone. I looked up to see a yellow school bus blocking traffic. You were smiling at me, pointing at it from your seat. I can no longer count the words you understand and use actively; every day there are more. Your mobility is also coming. You cruised the length of the sandbox in your bare feet two weeks ago; this weekend you cruised the length of a NYC park bench and back with your braces on. You are getting bigger and stronger. Your determination, which I first spotted as a flicker in your eyes when you were ten months old beginning physical therapy, burns brighter and brighter all the time.

When you were born, no one had any idea that your life would be so very different from the way you entered the world. No one had any inkling that shortly after your first birthday you would have a team of therapists and doctors and specialists working with you. But they are helping you, and while you may need their assistance throughout your life, you are the one who deserves the credit for the progress you make. You have unwavering courage; you are bold, you are brave, you are persistent. I admire you and learn from you.

In his book The Art Of Racing In The Rain, which I hope someday you will read, Garth Stein wrote, “In racing, they say that your car goes where your eyes go. The driver who cannot tear his eyes away from the wall as he spins out of control will meet that wall; the driver who looks down the track as he feels his tires break free will regain control of his vehicle.” A year ago, I had my eyes fixed on the wall. Unable to undo the issues you were born with, I felt helpless and lost inside. But you changed all of that. You helped me get my eyes back on the road.

In the past year of doctor appointments, therapies, treatments, evaluations, meetings and explanations, I have learned to watch you and to listen to you. You show me that you are progressing. You show me that you are learning. And most of all, you show me every single day that you are happy right now. Yes, life is frustrating for you. That's okay; it's frustrating for everyone. It doesn't matter to you that you're not running marathons or writing novels. You can move from point A to point B. You can express yourself and get all your needs met. You don't let this thing discourage you, and you don't let it discourage me. In this way you have accomplished in two short years more than most people ever could. You have helped me love you for who you are, and you taught me that who you are is are everything I ever hoped for in a daughter. I am so lucky to have you in my life, my sweet, beautiful, determined girl. I love getting to know you. Happy second birthday to you. I love you to the moon!


Friday, September 20, 2013

Checking Back In: An Anniversary Tribute

I am not a fan of summer in general, but I have never been so happy to say goodbye to one as this past summer.

I loathe extreme heat; I detest humidity. I flee the sun for shade, for air conditioning. My brain gets muddled, my body uncomfortable. I am always tired, I grow listless and impatient, and I lose all desire to be outside or to do anything that would involve working up a sweat. 

At the same time, summer is truly the busiest season for me at work. There's no time to slow down. The current year's strategic plan is in full swing and we're busy planning the next. Budgets are due. Everyone is up to their ears in spreadsheets and deadlines; some are cranky because they're cutting spending while others are stressed with the excitement of growth. I had both. Cutting meant long meetings and difficult conversations; growth meant extensive travel and a lot of networking. On top of it all, I was also in school two nights a week, taking microeconomics for my MBA. For months on end I was either running to or from work or school or the airport, and all the while the heat was in the mid 90s. I was a sweaty beast, exhausted and always schlepping a heavy bag. I was not running or biking. I was coming home late, usually missing the girls' bedtime and staying up until midnight at the computer or willing myself to do homework, always up early the next morning to do it all over again.

As this summer went on, I took on more and more and was home less and less. And at the same time, I was increasingly distracted. I had a phone in my hand at all times, paying little attention to where I was in the moment. I convinced myself that I wanted to to balance it all, that I could. I found myself devoting time to things and people and situations which took me further away from my three anchors: my spouse, my Teeny, and my Bee.

When my three year old Bee said, upon my return from LA or Chicago or North Carolina or some other place I worked from this summer, "Mama, I don't want you to go away to work ever again ever ever," it vaguely occurred to me that this was not sustainable. But I pushed that thought deep down. I just got myself another iced coffee and kept going. 

One evening at the dining room table surrounded with papers and books and Excel, I suddenly missed my husband. It had been weeks, maybe a month, maybe more since we'd spent an evening together at home watching a movie, talking, reading. I looked up at the calendar; it was already August. My class was nearly over and it was almost finals. My work deadlines were approaching. I was texting someone furiously while juggling it all, but nothing was getting done. I looked over at Johnny, deeply absorbed in Skyrim, just a few feet away from me. His profile, so beautiful in the light of the big screen. He glanced at me. "Everything all right?" he asked. It was a rhetorical question; for months I'd been grunting at my computer screen, offering monosyllabic answers to his attempts at conversation. At this point he didn't even expect a response from me. For too long, I'd been detached, not present except to murmur a quick thank you when he brought me tea or cold water. I put the phone down and closed the laptop. "I miss you," I said. In a flash, he was by my side, ready.

"C'mere," he said, his arms open.

At no point this summer did it occur to me that I might be having a midlife crisis. It would be a blog entry of a completely different nature to describe the many ways in which this manifested itself. But at 40, I am unquestionably approaching what other people call "middle age." At this point in my life I should have been slowing down, but instead I was racing through my days. If I had a dollar for every time I heard "I don't know how you do it all," I could retire now. At one point, I snapped at the person who said it without even thinking. "I'm not doing any of it well, so I wish people would stop saying that already!" I said. That was my first clue. I didn't need to buy myself a red Mustang or get liposuction to understand that I was running myself ragged and building up a lot of resentments. Without realizing it, I'd driven myself into total overload and part of me dreamed of just running away from it all. 

But that is not who I am or who I want to be. In my heart, there is nowhere in the world I'd rather be than with my three anchors, but I was so checked out that I may as well have been on another planet. The truth is that Johnny and I have worked very hard to create the life we have together. I love him more than anyone I've ever known, and I have loved him since the night we met. I love our life and our family. Lucky for me, I also really like him. Not only is he my spouse (a gender-neutral term I generally prefer to husband or wife), he is also my best friend. It's nearly a year now since the MRI that revealed Teeny's brain malformation, and that has without question been the hardest year of our lives. When we got her diagnosis, we talked frankly about this being the sort of devastation that ends marriages. And at that time, we agreed that we were in this together; we would not be a casualty of this awfulness that nobody asked for and nobody wanted. We are people who work hard and play hard, and who love each other passionately. Teeny needs us both, together, and we need each other. And I needed a reminder of all of that. That evening when Johnny came to me at the dining room table and hugged me, it was like a spell had been broken.

(P.S. Happy anniversary, babe. I love you.)

It can be only too easy for me to get caught up in myself and my own drama. I'll think that no one knows what it feels like to be me, no one knows how hard it is. I'll convince myself I am alone, that no one understands, not even the people closest to me. But someone does understand, and that someone is Johnny. The most incredible thing about him is his uncanny ability to read people and situations. I might be book smart, but compared to him I am gullible, naive, too trusting. I don't drill down to get at what motivates people's behavior or question how they really feel. But Johnny doesn't have to drill down. For him, these things are plain as day. It's as if he looks at life through an infrared lens, seeing a dimension that is visible to few others. Because of this, he knows me better than I know myself. He reads me like a book, which is something that even after 12 years continues to amaze me. And when I'm puzzled or frustrated by another person, asking myself "Why did that person say that to me? What does that mean?" he generally gets it right away and can translate for me. What I am most thankful for, though, is the space he gives me when I need it. The last thing I want is to be told what I'm feeling, why I'm acting a certain way, what I should do. Instead, he waits, and he keeps his mouth shut. Although I know it eats at him, he waits for me to figure things out on my own, and he's kind enough not to say I told you so when he turns out to be right. Again.

Once I finally realized that I was behaving as though I'd been on a desert island of me me me, things began to change in our house. I finished up microeconomics and then with work's permission, put the MBA on hold indefinitely. I put work travel on hold, less indefinitely. I made my work days more productive, meeting my deadlines and still making it home for bedtime. While I still had to work some evenings and weekends, we started catching up on movies and TV shows. I read two novels, I went running, I started cooking our dinners again. The best move of all was putting the goddamn iPhones down. I have one for work, another for everything else. I switched them to silent, remembered to check them periodically for emergencies, but otherwise did my best to forget about them when I was carving out time with my family. Occasionally I felt like I was missing something or someone, but more and more I was thankful for the quiet. Once or twice, I even accidentally left them at home. 

You get through the tough stuff not by pretending there is no tough stuff, but by facing it head on and also by celebrating the good. I had been acting like an ostrich with her head in the sand. I was avoiding everything, even the truth about myself and how I cope when things are difficult. I am normally a dweller. Why was I so avoidant all of a sudden?

I don't think there's a person in this world who hasn't successfully weathered a storm without learning to look between the raindrops at the happy moments. I am not impermeable. When it rains, I get wet. At times this summer it felt like the rain would never stop and that I was always the only one caught in the downpour. Like Eeyore, I was plodding through life with my own personal raincloud hovering just above me. Who wouldn't want to try to escape a life like that? But when I stop and think about it, there is unquestionable beauty even in the rain itself. I admit that I sometimes struggle with feeling grateful for the hand we've been dealt, but it is true that there is so also much joy in our lives. We've learned a lot we didn't know, and we realized along the way just how much we took for granted. We see clearly how much love and concern our friends and family have for us and for our girls. I never thought I could love two little girls as much as I do. There is sadness and disappointment, but there is so much to celebrate. Most recently, we got to know the magic of hearing both of our daughters call us mama and dada.

Bee is blossoming, and Teeny is too. Bee is learning to write and to read. She is suddenly a princess with a tutu and ponytails, spinning and dancing and asking for ballet shoes like the ones Katerina on Daniel Tiger's Neighborhood wears. She builds cities with Legos and blocks and draws, paints, and types. She wants to learn to ride a bike and she counts the days we can go back to Disney. She picks out her own clothes and helps me cook. When she's not making up her own songs, she's memorizing the lyrics to other songs she loves, insisting the words are how she hears them and not what I tell her they are. (Frustratingly for me, she's just like her dad in that way). She kisses me and hugs me and tells me she loves me a hundred times a day, and each time is as delicious for me as the last. 

And Teeny, sweet and beautiful Teeny. Almost two, she is all but weaned. She learned to say about a dozen words all at once this summer, like pasta, hiya, yeah, tofu, bath, book, car, cat, dada, stop, mine. And she knows far more words than she can actually say. She waves hello and goodbye. You say brush and she points to her teeth. She plays along when you sing head shoulders knees and toes, showing us that she knows most of her body parts. Ask her where her belly is and she pulls her shirt over her head with a goofy grin, pointing at her belly button. She is learning to cruise, ever so slowly. She picked apples off the trees all by herself, clinging to them tightly and so proudly, then dropping them into the bushel bag (relatively) gently. Her hugs are little slivers of heaven; she leans her head on my shoulder, grips my neck tightly with one hand and pats my back lovingly with the other. These hugs keep me grounded. They keep my heart fluttering with love and gratitude.

When the days get cooler, there is a spring in my step. I am happier outside. Nothing makes me smile like a weather report calling for a jacket and a hot tea. The leaves are slowly beginning to turn and with them my mind turns to new beginnings, to school starting, our wedding anniversary, Teeny's birthday, upcoming holidays in New England, apple picking, pumpkin carving, wearing socks to bed, curling up under a blanket with a book, snuggling with my loves in bed on a Saturday morning before we bundle up and head out to the park. 

In the past two weeks both Teeny and Bee have started preschool, which means Johnny and I have to be fully functional, coffeed, showered, exercised and ready to go with three lunches packed and out the door by 8 am. It's not like we're not up at dawn with the girls every day anyway, but being awake and being fit for society are two different things entirely. This was challenging for each of us even back when we were single, so mornings these days are often rushed and tense, especially if we don't remember to laugh about what a circus our household is at that (and every) hour.

Nowadays, nursery schools phase their children in, which means essentially that in the first week or weeks, the school day is an abbreviated one, and a parent attends along with the child. Teeny started first. Nervous about this moment since we enrolled her last March, I experienced some sleepless nights before her first day of class, and yet I was up with the sun that morning, packing her bag of extra clothes and a lunch, also filling an entire grocery bag of extra vegan snacks for her: veggie booty, crackers, and pretzels piled high. Her first week went without a hitch. The teachers took to her as she did to them, and the children were sweet and innocent, too young to know she is different from them. She is in a mainstream setting, among children ranging from 13 months to 2 years. She is one of the oldest, yet because she is with new walkers and still nonverbal toddlers, her delays are far less noticeable than I anticipated. I gave them copies of her many evaluations and they offered to have us meet with their learning specialist to ensure that her needs are being met, but it didn't take meeting with her for me to see not only that her needs are being met, but that she is thriving.  

Her teachers asked me to show them how to help her step, asked me how much intervention and assistance she needs. She answered their questions better than I ever could. I thought she'd need more help, but she showed us all that she is stronger and more stable and far more independent than I gave her credit for. She stands at the sand table, leaning her body against it so she can use both hands to hold shells, scoop sand, and make a happy mess. Her attention span is so long that even when she's the first at an activity, she's also often the last. She sits at the lunch table without needing to be buckled in. I pack finger foods and she helps herself. At the light table, she connects the magnetic tiles on her own. She claps and sings along during music, thwacking away on a drum or a xylophone, wielding a mallet carelessly (and possibly dangerously) always perfectly in time to the beat. For months Johnny and I worried about this moment, but after four days, she was ready, and we left her there on her own.

A week later it was Bee's turn. In addition to phase-in, her school does home visits, so she had a chance to meet her teachers  one morning at home with Daddy while I was at school with Teeny. On Bee's first day, Teeny was happily settled. I could focus without worrying. That morning, we dropped Teeny off at her school as a family and headed up the hill to Bee's school. We had been talking about who she would see and what she would do, and when we arrived a few minutes early she got to watch her friends come through the door one at a time. She stood behind me, hanging on my hip shyly until the door opened and the teachers welcomed us all in. The first day was only an hour. She sat on my lap the entire time. The second day, an hour and a half. That day, she sat next to me and included me in her play until the teachers leaned in and whispered to me, suggesting that I move my seat away from her ever so slightly, giving her the opportunity to engage with the other children. I complied, and by the time the day was over, she was hugging her friends like there had never been a summer break. On day three, I was told I could leave and just return at pickup. Somewhat reluctantly, I gathered my things and prepared for a protracted departure. I knelt down to hug her and kiss her, but she waved me away. "Bye, Mom," she said, and went back to her blue Play-doh.

I left my phone number on the list with the other parents' numbers and wandered through the Columbia University campus, thinking about how much I loved my kids and my life. I made a gratitude list in my head; it was endless. Right at that moment, there was nothing I felt more grateful for than the trees still in bloom, the birds, the beautiful buildings I passed as I walked, the green juice in my hand, a few moments to myself knowing both of my girls were safe and happy in school and my loving, hardworking spouse was home resting. I didn't know what tomorrow would bring, but I felt energized and able to face the rest of today. And that, for today, was enough.