Wednesday, January 4, 2017

Teeny Rae

Small but important update: 

We don't call Teeny Teeny anymore because she's now five and not that teeny, and also, she doesn't like it.

Hey, Teeny girl! 

I'm not Teeny! I'm a girl. I'm Rae! 

Hey, girlypants!

I'm not girlypants. I'm a girl! I'm Rae!

Hey, peanut! 

I'm not -- 

You get it. She likes being called her name. The end. So, Rae it is.

City Mouse, Country Mouse

We did it! After several years of deliberating, debating, stressing, worrying, researching and discussion followed by a sudden decision and then six months of very intense planning, we managed an out-of-state move. It's no small feat to uproot an entire family based on the hunch that you might be making things very, very good for one person in your family and man does it feel good to realize that the move worked for all four of you. 

While I was working on a list of the most noticeable things that have changed in my life in the past six months (and three days) since we moved, I dug a few paragraphs out of a draft email I'd written to myself a couple years ago when we were trying to figure out whether we wanted to move at all. At the time, I'd thought maybe I'd turn it into a blog but ultimately we got stuck in indecision for several years. Then we made up our minds very quickly It was a very long and painful process that I am so glad is behind us, and it was interesting enough to reread my words from back then (because so much of it has been realized) that I thought I'd post them here.


Since around the time Bee was an infant, which is also right around the time Johnny and I bought an apartment in the Harlem section of Manhattan, we have been talking about moving out of the city.

I am a native of a (back then) pretty tough part of Queens. I grew up in the city and was obsessed with spending every minute I could in Manhattan. I started commuting by subway to the Upper East Side for school by the time I was 11; transferring off the 7 train at Queensboro Plaza to catch the R train (before it became the N train) going over the 59th Street bridge was a thrill every single day until I graduated high school. As a teenager, I would have sold my soul to live in New York, NY. My high school boyfriend and I spent hours and hours riding the subway and getting off at a random station, walking around and riding all the way back. Because I lived in Queens, I got made fun of by my more sophisticated friends from Greenwich Village and the Upper West Side. They teased me, asking repeatedly if there were cows where I was from. I didn't think it was funny. Instead I vowed to become sophisticated like them: dye my hair black, go to CBGB at night, learn to smoke cigarettes and find a way to go to cast parties hosted by kids whose parents were away in the Hamptons, sketchy clubs that didn't check the IDs of clearly underage girls and, the ultimate at the time, the Rocky Horror Picture Show.

By the time I was seventeen I had left home and was living on East 25th Street. For me, nothing was more exciting than hanging out downtown, especially the Lower East Side and anywhere there was a club night.  During the day I loved waiting on line at the bagel store on early weekend mornings, wandering around the busy streets, walking and walking for miles; meeting friends for dinner or drinks at a restaurant, bar or club as night fell. I loved pretending I was a tourist in my own city when friends visited and even more than that I loved walking down any street any time of night or day like I owned it. Unsurprisingly, then, 4 am on any given night might find me in the meat packing district (which was a very scary place back then), Chelsea, the East Village.

And now I want to be a hippie. To be clear, I don't mean that I want to start wearing long, flowy skirts and patchouli oil. I don't even mean that I want to be a goth version of hippie. Ren Faires and poet shirts are not my thing. I might mean that I want to grow my armpit hair and stop dyeing my hair black -- someday. I am very aware that I get sucked into trends and that I feel pressure to conform in some ways and when I'm outside of a major metropolitan area that all goes away. I don't quite mean that I want to wear any old thing or stop all personal grooming, but I do mean that while most of me knows I don't need that Lululemon outfit to go running, I sometimes buy it anyway. I want to remove myself from the pressure I often feel to spend crazy amounts of money on myself on crap I definitely do not need or could get for less. I definitely mean that I want to stop throwing money in the garbage. Periodically there are articles that make their way around social media that talk about how New York City is the most expensive place to live in the whole country. We are a single income family whose single-income-r works in a non-profit, so it seems outright stupid of us to spend another second here. I want to focus more on our impact on the environment. I want to compost, grow some of my own food, recycle more. Have (rescue) chickens! I want to have a lawn or a yard (or both) and a tree to sit under. A hammock. A little more space. Shop at and work in a co-op. Send my kids to public school. Walk, run and bike in greenery. Hike on my own property. Get involved in the town governance. Not be able to hear neighbors, especially while sitting in our own living room. Not get whistled at, harassed, talked to and otherwise bothered with every single step I take. I want a deck so we can sit outside with dinner, a drink or a book. I want to be able to open windows and have cross ventilation. I want to not have to choose between Teeny's walker and Bee's scooter because our 750-square-foot apartment doesn't have room for both. I want more than one bathroom for the four of us and our two cats. I want an attached garage so we don't have to bundle the kids to walk ten feet.

I know that many of these things can happen right here in the city. No one is twisting my arm to overspend on clothing. I shop at some thrift stores already. I could compost using a worm bin; I know several people who do. There are community gardens we could have a plot in. There are two food co-ops (far from us, but they're there). Of course we re-use and recycle, but frequently I find myself forgetting my travel mug and then getting a giant plastic cup of iced coffee and just tossing it when it's done instead of bringing it home to recycle it properly. It's easy to get complacent here. 

We were recently in Vermont for a long and beautiful weekend. It's a long drive but it's totally worth it. And the 300 miles each way gave Johnny and me lots of opportunity to talk about this, our favorite topic. It's been a topic for a long time because while the list of things I want and don't want keeps growing, there are no easy answers. We are as deadlocked on this as we were when we discussed it four years ago. Back then we said we probably had about ten years in our apartment before we would truly outgrow it and the girls would need their own rooms. We have tried to accelerate the process time and time again, but something always gets in our way and puts us back on that ten year plan.

There are four big things that are keeping us here:

1) Work. My job is based in New York. While I'm told that I could eventually work remotely part of the time, I do need to be in the city or near enough to the city to get there at least some of the time. This would not be an issue if we could afford to buy a second home and I used our current apartment as a pied-a-terre a couple nights a week, but I don't think we can afford that. I am too old for couch surfing and I can't think of anyone who would want me to bunk with them that often. I love my job and I don't want to leave it, so it plays a very big role in this decision making process.

2) Education. Teeny's needs are currently best met here in the city. As readers of this blog know, we just committed to two years at a fantastic preschool that is equipped to do all that we need it to and more. She is in good hands there. The school is in Manhattan, and more importantly if we left our school district we would lose our CPSE administrator, and we don't want to do that. So that's two years at least before we could make any major changes and even then it's not clear to me that her needs will be pet in some small town's public education system. Also, now that we have Teeny in a school for two years, our attention turns to Bee, who is about to start her last year of preschool herself. This year we will go through the process of getting her tested for G&T and the specialized public schools like Hunter - where I went - and Anderson, and of course we will go through the very hair-raisingly competitive application process for private schools. Presumably we will either find ourselves in an amazing public school we can't afford to leave or in an amazing private school whose generous (and necessary) financial aid package makes it difficult for us to pass up, and she'll be set for at least eight more years. During which time it will be Teeny's turn again, at which point we will have to decide based on her abilities then whether she needs to stay in the city or if she will do well elsewhere.
3) Fear. We are both New York City natives (have I said that enough?) who always thought we would live here forever. Johnny and I have lived here or in other big American or European cities all our lives, and we are aware that moving away means loss of convenience, loss of easy access to restaurants, movies, theater, museums, nightlife. We rarely if ever avail ourselves of any of this and when we do it's with a great deal of planning to arrange childcare, finances, other people's schedules, etc., so we don't believe this would really cramp our style, but we are aware that it will be a really big change regardless.

4) More fear. While we are co-op owners, we have never owned our own house. We pay an exorbitant amount of money in monthly maintenance fees but in exchange we have a super, a porter, three doormen, a co-op board and a building management company all there to address our needs and take care of issues (usually) in a timely way. To say we are not handy is an understatement. We can barely hang a painting ourselves. Luckily for us we have family members who are homeowners and other family members who are not only handy but have made lifelong careers from working with their hands, so we can lean on them to ask questions. But last year we backed out of a purchase because I got cold feet after the home inspection. I felt like I couldn't handle the financial and emotional burden of having to learn how to assess repairs, find contractors and set aside the money to replace, say, a boiler or a roof at a moment's notice. 

There are four things we think we know we do/don't want that will influence our decision:
1) Town. We don't want suburbs. Originally I thought we did. At first, it made sense to buy a house in a bedroom community of New York City. We ruled Long Island and New Jersey out just because they are Long Island and New Jersey (with loving apologies to my LI and NJ friends and family) and looked in Westchester. Ultimately we decided against that too, leaning more in favor of something more small-town-ish and less of an extension of New York City.  The suburbs we visited felt very white, very conformist and very upper class. I don't claim to know everything about what's out there; I know we are making generalizations. Still after 40+ years of being the weird kid even here, I want to be somewhere I will not feel judged looking the way I do, with my tattoos and somewhat unconventional style and so on. I want to be comfortable being vegan (and be able to get something to eat when I'm in town if I get hungry). We want there to be at least somewhat diverse population with an LGBTQ community and unconventional families familiar with special needs, stay-at-home dads, adoption and the like. So, progressive. A focus on the arts and the earth. Small-ish population but not too small as we think rural would be too different and too isolating for us. And near-ish to a city like New York or Boston or even Providence, if possible.

2) Northeast. Nearly all of our family is in the northeast so we aren't prepared to move out of this general area. We want to be able to get back on short notice if it's ever necessary and when it's not we still want to be within a day's drive of grandparents, great-aunts and -uncles, cousins and family friends. And we love New England. Our last five or more vacations have been in Massachusetts and we keep finding ourselves there for weekends, family visits and so on. We love the Cape, we love the Boston area and we love Western Mass. We even spent a week in Central Mass last winter just because it was close to everything else! I grew up spending a lot of time in the Berkshires and love it there so so so much, and as a student and young professional I lived in the Cambridge area for six years, which I also love. We also feel totally at home in Vermont and have been there quite a few times, but think Massachusetts (or possibly southern Vermont) might be a better choice if only because it's closer to New York City.
3) aaaaand that's as far as I got.

But here we are, six months and three days into living in the country. Everyone keeps saying "What a big change!" when I tell them we moved from New York City. In some ways it feels that way and in some ways it doesn't. In some ways it's like we've always been here. And it's all good.

Our Miss Teeny is now five. Her birthday worried me because it was just a few weeks after the start of school and she didn't know anyone, but it was better than I ever could have hoped. We chose not to have a big party for a bunch of kids we didn't know. Instead we just had a big playdate. We invited her new pals and their families who have embraced us like old friends. Everyone came. We did an art project, ate cake, and had a little parade up and down our street with her in her new little electric car. I imagined her like Milo from The Phantom Tollbooth, reading the road signs, depositing her coins into the cup, squinting at a map and embarking on a wild and fantastic adventure. And she's really done exactly that. 

Milo had no idea what he would find in Dictionopolis. He hadn't even really intended to go there. He just closed his eyes, poked a finger at his map and then went wherever it told him. While our move involved a ton of research, the truth was that we had little better sense than Milo did of what we would find when we moved out of New York City.

Six months in, so far, so good.  A friend of mine with a special needs child who two years before us also relocated to another state in pursuit of many of the same things we wanted reached out to me and said hey, doesn't it feel good? You uprooted the lives of four people in the hopes that you would be making a better life for your daughter. You did it! And doesn't that feel good? Yep. It sure does.

In some ways it feels like we have always been here. Apart from a few friends, I don't miss New York City at all. I love the quiet. The clean air. The trees. The fall foliage! The wintery landscape. The snow and ice. I love sitting on the deck or hanging out with our chickens. I love putting work into the house and I even love daydreaming about putting work into the house. Even though right now we can't afford the big projects we know we want someday, even the little ones are fun. 

The girls are settled. It's almost like they've always been here. Teeny's first IEP meeting came and went and I am very pleased with her services. She is already adored by her new school as much as she was by her old school. She has PT, aquatherapy, music, hippotherapy, adaptive dance and OT all outside of school and we are working on getting her additional speech as well. She's a busy kid. Bee loves school. She takes music and art outside of school, and once a week she and the 12 year old boy from next door work on Lego projects or play the Pokémon card game or do drawings together. She gets me up every morning that I am home so we can walk or bike or walk or read or just talk before everyone else gets up. And every Saturday morning she comes with me into Boston to Teeny's adaptive dance class. We drop her off, walk to the Starbucks a few blocks away, she drinks as much as she can of a decadent tall soy decaf mochaccino with only half the sweetener and she reads me a chapter of her book. She, too, is a busy kid. She has more or less stopped mentioning her friends from her old school (except, "everyone eats meat here. How come there are no vegetarians or vegans like there were in New York?" and instead asks for play dates with her new schoolmates.

Sunday night is movie night for us and that means we gather in the basement with hoodies and blankets and beanbag chairs and frozen vegan pizzas and we watch something as a family. We instituted this at the start of the school year and so far we've watched a variety of movies including Mary Poppins, the Addams Family, and every single movie or short movie featuring the Minions.

Johnny is settled. He has his routines, which are kicked up into high gear when I am on the road. He has little time to himself during the day because there are always errands to be run, chicken shit to clean, wood to chop, service providers to call or let into the house, kids to run to classes and therapies. He loves the local library's enormous collection of books and movies. His new favorite person is the guy who runs the local beer and wine shop. This guy calls him when one of his favorite IPAs are in, and one of his recent runs to grab a four-pack of 90 minute Dogfish or Ballast Point Sculpin or some other beer with some incredibly ironic name and label (my favorite is Raging Bitch), he also worked up the courage to go into the Italian restaurant next door and ask if they would make vegan pizzas if we provided the vegan cheese. And they said yes! Tiny victory to you perhaps, but this is huge for us. My spouse rocks. And me? I just wish I were home more. 

Six months ago, whenever I was in the airport I would Face Time Teeny and she'd ask me to flip the camera around so she could see all the people. She would ask me to walk over to a window so she could watch the planes pull away from their gates and slowly make their ways to the runway. She would ask to see the people again, the moving walkways, the shops, the signs, the tarmac. She would ask me to show her my seat, the windows, the lights. She was fascinated. 

Today as I boarded my flight home, I Face Timed her. She was deep into dramatic play mode, busy at her kitchen set, making imaginary mac and cheese. Johnny propped the phone up on her ty kitchen counter. Hi Mama! she said. Are you on the plane yet? No baby, I'm-- and she held up a hand. Wait, she said. I have a call in five minutes. I have to go. She turned away from me and picked up a pretend phone. Hello?! Oh yes. She pretended to listen. Yes. Okay. She turned back to me. I can't. I have to go. But wait, baby girl, I protested. Can you tell her you'll call her back soon? No, she shook her head gravely. I can't. What else could I do? Okay, baby girl, I said. I love you. Goodnight! I'll see you in the morning. 

How depressing. 

Earlier today I was on the phone with a friend who asked me about how my family was adjusting. Great! I said brightly. I told her how my underlying goal is to minimize the impact of my travel on my kids. How I work hard to plan their activities for the week before I leave, how Johnny and I review who has to be where when. How Bee and I sometimes Face Time when she gets up early and she reads a chapter to me then, flipping the camera around to show me the pictures, and of course the words she stumbles on. I told her how lucky they are to have a parent who is always home and to have friends and neighbors and family in their lives consistently even when I am not. How I have been trying hard to be home on the weekends so I can take both girls on our Saturday morning outings while Johnny sleeps in, how I've never yet missed a movie night. 

And yet, there it is. No, I have a call. I have to go to work. I'm sorry, I can't right now. I'm leaving for the airport. I'm off to New York. How many times have they heard that? 

It weighs on me. But it is what it is. This is what I signed up for. It's what I knew I was getting into. I love my job and I love my family and I love being home and I love being on the road and I love being with my spouse and my girls and I love being with my colleagues and I love doing all the things I do. And I get to do them imperfectly and wonderfully. Adjusting is a long process and we are still at it. It's all positive and every day we say over and over how grateful we are that we moved, and yet it's still challenging at times. 

Some of the biggest changes for us are the obvious ones, while others have been things that might seem small to someone else. I've been making some notes here and there that I've cobbled together in the list below:

1) Cost

I was afraid that moving would be too expensive, that on our one-person income we could never afford a house in a town we loved in a school district we felt could serve both our children, with enough space for the four of us and with enough of our nice-to-haves. But you know what? In NYC we owned 750 square feet of space. For that we paid a monthly mortgage and since it was a co-op we also paid maintenance. We paid for our parking space in an indoor garage because a) parking in New York City is impossible even with a handicapped parking permit and b) with a kid who can't walk, you just can't park five blocks away and carry her plus groceries plus whatever and c) we wanted our car to not be stolen. We paid a fortune to insure that car even though it was garaged indoors and not used for commuting. We also had to pay for a storage space since nothing fit in our apartment. Which was stupid because if you put a bunch of stuff in storage you forget it's there so you may as well have thrown it away because you end up buying another one or saying "we have one that's in storage, we can go get it," and looking at each other and groaning and then not getting it and then what's the point of having that bike or that easel or that box of awesome cookbooks or whatever. Then we bought a house. And now, we pay for the house. And that's it. We park the cars in the driveway and we store stuff in the closets and the basement and the cabinets and the shed and the wherever. And the cost to insure two cars is less than what we paid in NYC to insure one.

1) Outside

Our apartment in New York was so small that we had a rule that we HAD to leave at least once every single day. It wasn't even that we needed the air or the exercise, although of course we did. It was that the apartment was so small that by the time we cleared the breakfast table we were already all on each other's nerves, so in order not to want to kill one another, we had to invent things to do outside. But getting outside with a family is such a production in New York City. Everyone has to get dressed and ready to go out, even if it's just to the mailbox, because you can't just go outside and leave a child inside the apartment alone.  And since you all have to go, you may as well make it worthwhile, so you pack as though you might go to the moon. A bag full of wipes, toys, a mama book just in case I get to read, a kid book just in case they want to read, two phones, water, coffee, snacks, a stroller, blanket, hoodies, diapers, change of clothes, whatever. My bag is so heavy that I can barely carry it, and that is before wearing or preparing to carry the child who cannot walk independently when she invariably tires from using her walker. And then there's what a friend of mine calls the New York City kid tax: we have to have a destination, which invariably costs money. Even if it's "oh let's head over to Children's Museum" or the less inspired "We can always grab coffee," or "Let's go pick out a book for the girls at Barnes & Noble," between admission, food, shopping, coffee, whatever, it always turns into a $100+ day long excursion. Always. 

Here, we walk out the door. The front door or any of our four deck doors. The end. Sometimes the kids are not even dressed and sometimes we forget to put on shoes. Bee can open the door herself and the girls can be outside, hanging out with the chickens without us. She is now the one who runs out to the mailbox. Johnny can grab something from the car or the shed without having to suit up the entire family (not to mention having to tip the garage attendant). Also, when they are in bed, we can be outside on the deck or the lawn looking up at the stars (and there are thousands! None of your puny handful of stars that struggle to peek through New York City skyscraper light pollution). Some citronella candles for the summer mosquitoes, a grown up beverage or two, and a hoodie; it's as good as a date night.

The down side: the cats want to get outside too. Ours are wimpy city indoor cats who think they are badass but aren't. They are completely entranced by the 24-hour cat TV playing right on the other side of the screen doors. Our chickens! Chipmunks! Birds! Bunnies! (And, uh, fox! Coyotes? Who knows what lives in those trees behind our house!) They are always on high alert, just waiting for the moment one of us fails to close a door all the way. It doesn't help that they refuse to wear collars.

2) Fashion

I spent a fortune on clothes in New York. Work clothes. Going out clothes. Workout clothes. And so many shoes that I never wore because they hurt my feet. So many.

Everything here is way more casual. Nice-casual, of course, but still casual. And now that I work from home some of the time, I live in comfy cotton and I have enough work clothing to last me for business trips to New York, LA and wherever else for the rest of my life and for ten more lives. I may never need to shop again as long as I don't succumb to the challenges of working from home (my fully stocked kitchen is ten feet away from my office) and the challenges of traveling 50% or more of the time (restaurants 3x per day) and need a new wardrobe because I've gained 500 pounds. 

The down side: my spouse actually likes me in my work clothes. Sorry sweetie! Shorts or jeans and a nice t-shirt or are way more comfortable. I feel sad when I take off my Fit Flops (in summer) or my Sorels (in every other season so far) and have to put on real shoes. As it's gotten colder I am wearing my work boots, jeans and a quilted vest. The all-black version of the LL Bean catalog. Oh well. At least I still shower every day. :-)

3) Appliances and services

In New York we had the luxury of having a washer dryer in our apartment, but they were small and the dryer was ventless. Ventless dryers suck no matter how much you spend (and they are pricey!) and it takes hours for a load of clothing to dry. Here the appliances are bigger and cheaper and way more efficient. In New York the apartment was so small and the air was so bad that we ran the air conditioners (all three of them) at full blast anytime the temperature crept above 70. Here we have high ceilings with ceiling fans and lots of cross ventilation and we don't need the AC at all except on very hot days when the temperature was well into the 90s. In the winter, we use the heat in the early mornings and then in the late evenings but during the day and while we're sleeping we find we don't need it. For regular mail we don't have to find a mailbox or go to the post office, we just stick it in our mailbox and put up the little red flag, a service I find adorably quaint.

The down side: In New York we paid so much per month in maintenance that we almost never had to pay for anything or worry about anything at all for general apartment upkeep. We separated trash from recyclables but it all went into the same trash room in the building and it went whenever we wanted. I never saw a bug in the apartment but we could sign up for exterminator services that were covered by the building. Mail and packages were received by the doorman. Here we have to pay for trash collection services *and* we have to pay per trash can or per bag that is collected. We have to have our property treated for ticks and mosquitoes. We have to worry about landscaping and we have to manage all our own repairs. Part of the reason we even noticed that we could live so easily without AC and heat around the clock is that I panicked thinking about the cost of heating and cooling an entire house. We pay for electric and gas, and here we also pay for water and for the cleaning and maintenance of the septic system. We have a shed for tools and appliances we will have to learn how to use (like a lawnmower!). Johnny got himself an ax and a hatchet for the wood we needed for the two wood burning stoves and we got a hell of a lesson when the first cord of wood we bought was dumped in a big messy pile on our lawn and he had to stack it himself. It took him days. 

4) Customer service

In New York, businesses like the bank, the post office and the supermarket are always overcrowded. The lines are long and people are cranky and impatient and they are staffed by people who don't want to be there. I used to say not even half-kidding that the post office near my apartment should be the tenth circle of Hell from Dante's Inferno. Here, running errands has been nothing short of a delight. People are polite and friendly and helpful. And all establishments make you bring your own bags or give you paper for a ten cent fee. 

Goodbye to exchanges like this:

Me: I have a bag
Employee (ignoring me and bagging my stuff): ...
Me: I have a bag
Employee: Taking my stuff out of their flimsy double or triple plastic bags and then throwing them away even though I didn't use them (!)
Me: Grrrrr.

And hello to:

Employee: Hi there! How are you today? I haven't seen you in a while. How can I help you? 
Me: I'd like this and this please. And I have my own bag. 
Employee: Sure thing! Here you go, have a wonderful day! Hope to see you again soon!

The down side: You have to drive everywhere and think about where parking is. 

5) Space

Our house is more than three times the size of our old apartment and we now have TWO bathrooms and are thinking about putting in a third. This is so exciting I can't even tell you. That two of us can pee at the same time now is earth shattering. It's amazing to have space! In New York every single inch was filled and we worked so hard to keep things organized that half the time we didn't even bother to take out a toy or a game or a project just because it would make a mess and it seemed too difficult to deal with. It seemed easier to just throw stuff out than try to find a place to put it. Here we have a table that we have designated just for jigsaw puzzles, which we love but required too much effort in New York because they took up prime real estate on our dining room table that also served as the girls' home base for homework and project and my home office and if they stayed out unfinished, the cats or the kids invariably ended up losing pieces and they'd end up in the trash. 

The (not very) down side: I sometimes have house envy. Having moved to a town where the houses are mostly bigger and newer and fancier than the one we just moved into, part of me is already thinking this upgrade isn't good enough. We have sunk every penny into getting here -- the renovations we would like to do that the house really needs are going to have to wait. So my eyes move silently over the other houses in our neighborhood. They have garages! This one is having new windows put in, that one has a mother-in-law apartment at the end of their lawn, that one is the size of a cruise ship. Wow, look at how beautiful that one is! I look at the current listings to torture myself with what's coming on the market now. Other people have three bathrooms! Other people have guest rooms! Other people have family rooms and living rooms. Other people have this or that. Look at how this one redid their kitchen, look at how big that one's master suite is. Then I remember what we came from and remember how wonderful all this new space is to my kids and how if our house was that big we would just fill it with crap and then I would have to clean it.

6) Education and related services

This is ultimately why we moved out of NYC and why we picked this town in particular. Bee was going to a wonderful but very expensive private school and the Herculean effort involved in applying for financial aid available was more than I felt I could sustain for the next thirteen years of her education, especially when coupled with everything else that involved getting her there (like leaving the house at 6:45 am to get her to the bus stop, or taking her on the train at 7:45 instead because 6:45 was just too cruel, like paying extra money for after school activities that all the kids did but that made her day 9 - 10 hours long excluding her commute and having to leave work early to pick her up ANYWAY, like worrying about what to do with her over the summer because summer camp in New York City costs around a thousand dollars a week). Then the other kid. Even if it were easy to navigate the special needs system, even if the zone schools were not terrible, even if we could afford the exorbitant prices for all the ancillary services that help children like Teeny, just getting her to and from everything was killing us. Even with one stay at home parent we could not get her everywhere she needed to be -- therapies, doctors, specialists, etc., and still manage Bee's schedule and mine. J spent his life in the car as many parents do but that was just for her and in the last year of schooling our kids went on three play dates. Three. That's all we could manage.

The down side:
I haven't found one yet. Teeny's services in school are somewhat reduced, but MassHealth, the state Medicaid program, covers additional services that her New York State Medicaid never did. There just aren't enough hours in the day to fit all the services that are available to her. It took us four years to amass her team and her services in New York City. In four months, we got her involved in everything she had going on in NYC and more. It's amazing. Teeny is happy. Bee is happy. They are making friends and they are growing and changing and flourishing. If nothing else in the whole world was good about this move, the schools and the services made it totally worth it a million time over and over and over.

And there's more to discover every day. 

Wednesday, November 30, 2016

Please Please Please Let Me Get What I Want

When Bee was about four, she went on a lipstick kick. Out of nowhere, she decided she just had to wear lipstick all the time. I was not happy, so I lay down the law. You are four years old, I told her. You don't get to wear lipstick. Not ever. But she pressed, and I amended the law. You are four years old, I said. You don't get to wear lipstick out of the house. Not ever. So she wore it at home. Every day. My pinks and mauves weren't good enough. She wanted red. Forget it, I told her. You'll look like a hussy. A what? Never mind. You're four. Even I don't wear red lipstick. But Maaaah-maa! No, Bee. I said no.  But I wanted to compromise, so I got her blue. I got her purple. I got her hot pink. And she wore them all. She practiced putting it on in the mirror, sometimes looking more like Robert Smith, other times looking more like a drag performer. She pressed more, so I amended the law again. You're four! You don't get to wear lipstick at school. Not ever. So she wore it at the playground. At Nana's house. To Whole Foods. To ride her bike. Sephora became her favorite store in the city. She demanded special Mama-Bee outings to play with the testers. On vacation in Provincetown, she discovered a cute makeup store I'd walked past a hundred times and she pulled me in. It was an adorable little boutique where they doted on her and found her endlessly entertaining. They taught her the difference between matte and glossy, between lip stain and lipstick. They taught her how to put actual glitter on her lips -- blue over blue lipstick, pink over pink.  "I look like Hedwig!" she exclaimed in the mirror, much to the shop owner's delight. But that was not enough. Still she wanted red and still I would not let her have it. For a year, maybe more, she begged. And begged. I learned a great trick. Look at my face, I'd say. Look at me. Do I look like I'm going to change my mind? But Maaaaah-maaa! she'd start. Do I? I'd ask. Do I? She gave up and I was proud. I had read somewhere that giving in after they beg and beg and beg just shows them that begging works. Well, not on this mom! 

She was quiet after that. For a while, no one talked about lipstick at all. And then on a whim, I bought both girls a new lipstick. A red lipstick. I don't know why I did that. Maybe it's because Bee wore me down. Maybe it's because I wanted to surprise her and make her really happy. Maybe it's because I found them in the local drugstore, vegan and on sale and really cheap. Maybe all three. But I did and she was so excited that she jumped up and down and threw her arms around me and squealed "I love you Mama! Oh, you're the best Mama in the whole world!" She made me get out my label maker and label hers with her name so her sister wouldn't take it by accident. She designated a safe space for it to live where she could reach it by herself. Rae copied her and painted a messy red Joker gash across her own mouth and teeth. For days they both wore it constantly. Then Rae forgot about it and then Bee forgot about it. I forgot about it too. Months later, when we packed to move, I found the one labeled B-E-E hidden in the back corner of a shelf in the bathroom. I tossed it into a box just in case she remembered it and had heart failure that she couldn't find it. So it came with us to our new state, but she never asked for it. In fact, the obsession with lipstick, lip gloss and even lip balm ended with that red lipstick. I eventually threw it out.

Why I didn't remember this last year when she began to obsess similarly about shoes, I don't know. She begged for high heels. When you're twenty, I smirked. She shrieked. No! Not twenty! She paused. Ten, she negotiated. Seventeen, I offered. We settled on fifteen. But Mama, she said thoughtfully. That's ten years away! I want high heels now. No. I said. I tried my old standby. Look at me, I said. Read my face. Do I look like I'm going to change my mind? She had her answer ready. But Maaaah-maaa! 

I relented a little. First I offered her my own shoes, high up in the closet, lonely and unworn. She blinked. I can wear your shoes? she repeated in disbelief. Go for it, kiddo, I smiled. And she did. Clomp, clomp, clomp. Clompclompclomp. Enough with the shoes! yelled Johnny, annoyed with all the noise. And the shoes went away for a day, maybe two. But the next time Bee put them on, her sister noticed and wanted them too. Little Rae, unable to walk, thought it would be fun to wear them on her hands as she crawled around the apartment. Two seconds later: Bonk. Followed by howls. She'd tripped -- while crawling -- and hurt her chin. That was the end of that. It's not safe! I screamed. 

The shoe fetish went on for a year. Maybe more. And honestly, it just didn't seem worth the fight, but I also didn't feel like I could back down.

Clearly, neither did she. She tried every workaround she could think of. Take the rain boots, for example. They were hand-me-down Wellies, two sizes too big, plain black and worn. She wore them day and night, until they gave her blisters. Why are you wearing those clunky old things? I asked her a million times. It's not even raining! Because I like them, she insisted. I couldn't figure out why. Why do you like them so much? I asked her again. Finally, she filled me in. They have a heel! They do? I asked, incredulously. I picked one up and turned it over. Technically, she was right. The heel was about a third of an inch higher than the toes. But the blister got the better of her and one day she asked me casually if I could help her find her tap shoes and I fell for it. She was taking dance classes, after all. But when I came home from work a day or two later, I opened a drawer to change into a pair of sweats and the tap shoes came tumbling out amidst yoga pants and running tights. Those fucking tap shoes, Johnny explained apologetically. I couldn’t stand it another second. I had to hide them. We watched The Wizard of Oz, and for weeks afterwards she reminded me constantly of how jealous she was of Dorothy and how she really wanted red heels like hers and how other moms are nice and let their daughters wear heels like those whenever they want.

And on and on and on. Until one day I agreed to buy her a pair of flats that had the tiniest heel ever. The tiniest. These shoes were cheap and awful but they had cats on them and they were silver glitter and she loved them. The rule was that she could only wear them at home. Which she did -- night and day -- until the day she brought them over to a friend's house when she packed a dress up bag. She not-so-accidentally wore them home, which suddenly made them outside shoes, which meant she couldn't wear them in the apartment anymore even though I still wouldn't allow her to wear them out, which meant we were now fighting about shoes again. 

On playdates, she tried on other girls' party shoes. Their boots. Their dress up slippers, princess shoes, sandals, whatever. Once, a mom took pity on her and sent her home with a pair her daughter no longer wore. I was enraged at the time, feeling somewhat self-righteously that my parenting decisions were being disrespected and overridden by a parent who was raising her own little JonBenet Ramsey. I was so ungrateful that I neither thanked her for her well-intentioned gift nor told her how I really felt, opting for the far less mature, far more passive-aggressive option of taking the shoes away from my kid and complaining incessantly about that mom. All that did was essentially kill that friendship and kick up my kid's shoe obsession into an even higher gear than it already was.  Until, amazingly, perplexingly, she stopped begging for heels.

Summer must have had something to do with that because it came with sparkly flip-flops and light-up Croc sandals and even a hand-me-down pair of lacey Tom's slip-ons. It came with new Twinkle Toes and a pair of flats that she was allowed to wear out of the house. They too had cats on them but they were less flimsy than their predecessors and they were totally flat. With all of these to choose from every day, she stopped talking about high heels for a while. I thought she'd forgotten, or that maybe she'd gotten over that phase. Silly me.

A few weeks ago at a new friend's house, she discovered a forgotten pair of Cinderella slippers, plastic and two sizes too small. She stuffed her feet in anyway and made me think both of Chinese foot binding and of Cinderella's stepsisters, whose desperation to wed the prince matched my daughter's desperation for a pair of shoes with a heel. At someone else's house, she slipped off her shoes and slid on a pair of boots she found by the door. They zipped up her calf with a half-inch heel. They were cheaply made, in a color she didn't even like, with gold chain trim. All the same, she whined and begged and implored me to buy the same ones in front of that other kid, in front of that other kid's mother and at every opportunity for days and days after that play date.

Watching her beg me for a pair of beat up old boots reminded me of something I did when I was her age. When I was little, we regularly visited my grandparents in Florida. They lived in a senior complex and it felt like everyone there was ancient except me. There were almost never any kids around and I was bored out of my mind waiting for the grownups to get ready to go to the pool or to decide to do something fun. I was desperate for other kids who might also be visiting, but even when I found them, they often had siblings or cousins with them; they didn't have time for me. When I was six, a baby showed up at the pool one day. Her name was Lexie. Her parents were visiting someone too. I loved babies and I loved Lexie and I loved that her mother -- young and pretty and tired -- didn't mind me playing with her. She seemed to like the company. I attached myself to Lexie and her mom and hoped that my family wouldn't notice. I'm Lexie's mother's helper, I explained to them importantly. It's a job

One afternoon I helped Lexie's mom carry all the baby stuff from the pool area back up to their apartment. I really liked pushing the stroller; I remember wondering if people who saw me would think I was the baby's mother, or maybe her sister. Up at their apartment, her mother asked me if I would like to stay for dinner. Of course I wanted to. I didn't care what they were having. I wanted to stay for dinner. I wanted to stay forever. I wanted Lexie's mom to tell me how much she needed me to help her, how she wanted to keep me, take me back to New Jersey or wherever she was from and be my mom too and then I would be happy and have a baby sister and a family who loved me and maybe even liked me too. So I crossed my fingers and my toes and my arms and my legs and my tongue and I dialed my grandmother’s number. Pleasepleasepleaseplease I whispered under my breath as I waited for someone to pick up. I heard my Nana's voice and relaxed a little, because Nana always said yes to everything.  But this time, she hesitated. Let's see what your mother says. Lor, she called. It’s Aimela. She covered the receiver with a hand and I heard muffled conversation before some fumbling and then my mother. What are they having? she demanded. I wasn't sure. My mother wants to know what you're having. We're having liver, said Lexie's mom sweetly and my heart sank. Liver! I hated liver and I refused to eat it whenever my mother made it. I knew I was sunk. Liver, I whispered into the phone. But Mom! I begged. I don't care. I'll eat it! I want to stay! Aimee, she said. No. Don't be silly. Say goodbye and come downstairs. You'll see them again tomorrow. 

I cried. I begged. I whimpered. But I had to leave and underneath it all, I was angry. Part of me had been hoping that this family would adopt me. They had seemed so perfect. Why would they invite me to eat something like that?  Now I had to go home to my own lame family where no one loved me or ever bought me anything or thought I was interesting or important. 

So when Bee was in tears in someone else's kitchen begging me for high heels, I remembered Lexie. Nearly forty years after volunteering to eat something like liver just to get a little attention from someone else's mother, I felt that same desperation from my own daughter, clad in someone else's too-small shoes, willing to sacrifice her own comfort to feel like she belonged. And I realized that this was just like the red lipstick that she wore twice and forgot about. Maybe I'd been saying no to my daughter because I hate all that femmy stuff on me, because I hate makeup and high heels, because I don't know how to wear red lipstick and look like anything other than a clown, because fancy shoes hurt my 43-year-old feet that have fallen arches and bunions, because I hate the feeling of lipstick on my mouth and how it comes off on my daughters' cheeks and on my coffee mug, because I hate my thick legs and how they look in very girly shoes, because Johnny wishes I'd wear lipstick and heels when I'm really more comfortable wearing lip balm and boots, because it's hard for me to be raising a child so unlike me.

So I decided I would get her a pair of heels for Christmas: a pair of little-girl Dorothy shoes; ruby-red sequined Mary Janes with a one-inch heel. And now that she's walking much better, I got a pair of those for little Rae as well. They can both clomp around in them in the house to their hearts' content on Christmas Day and then with any luck, after a few days, they'll forget about them. 

Monday, November 7, 2016

This is Halloween

My Halloween sucked. How was yours?

Around the first day of autumn, when it was still well into the 80s every day and the leaves were still bright green with life, the Halloween decorations started to go up around town. Two-foot spiders climbed up the sides of people's houses. Skeletons dangled from tree branches. Graves adorned lawns. Those awful white polyester messes meant to be spider webs tangled shrubs and bushes everywhere. And Bee demanded that we participate. We will, we will, I kept saying. But we didn't. I'm jealous, she whined. We need lights. Graves. Zombies! We do not need any of those things, I told her, all the while feeling like the Grinch who stole Halloween. I love Halloween. I'm goth! Of course it’s my favorite holiday; it always has been. For me and for lots of my friends, Halloween is every day! 

But when it comes to costumes and makeup and decorations and all that, I am the worst. I have lots of creative ideas that I never have the confidence to try. Growing up, I always ended up being a cheerleader for Halloween even though I was never a cheerleader and I never even knew any cheerleaders. One year when I was about ten I decided I was going to be a calendar. I had a big roll of blank newsprint paper that I cut twelve long sheets from and tied them together. I sketched the months out painstakingly in pencil, one on each sheet. Before getting crazy with markers and color and such, I tried it on like a paperback sandwich board strung from my shoulders and examined myself in the mirror, secretly pleased at my ingenious. But what are you? my friend from upstairs gawked, judging me. She was going to be a cowgirl; her long honey brown braids and splash of freckles made her look like the prototype for Toy Story's Jessie.  Um. A calendar? I said weakly. I swallowed hard as she giggled. For a long time she said nothing, and then: Are you sure you want to be a... calendar? Actually, I wasn’t at all sure. My confidence evaporating, I ripped the draft of my costume off of my shoulders, crumpled it up and threw it into the trash. I borrowed the cowgirl's pom poms and went as a cheerleader. Again.

Every time I try to decorate my living space or put on wild makeup or deck myself out in any way, I am that girl who wanted to be a calendar and ended up a cheerleader. I have friends who are so artistic. So creative. So thoughtful and deliberate. A very androgynous boy I dated years ago drew thin tatters of lace under his eyes with black eyeliner every time he went out. He looked so sexy and somehow it never smudged. If I tried it, I'd look like a clown with two black eyes. One friend of mine collects all kinds of tiny interesting things; her house looks like an alchemy lab. Another friend painted her dining room wall with chalkboard paint and invited her friends to write messages and draw pictures with colorful sidewalk chalk. It looked fantastic. Another, an English lit major turned teacher, piled books from floor to ceiling and I loved her cluttered but cozy professor look. If I tried any of that, it would just look like a big mess.  I have learned the hard way that when it comes to my clothes, makeup, furniture and home decor, I have to keep it really, really simple.

That's what I thought about trying to decorate my house, myself or my children for Halloween. A bunch of money spent to make a huge mess on an entire acre of property? No thanks. I’ll keep it simple. I bought an armful of pumpkins and dumped them on our doorstep. I never even bothered to carve them. A week before Halloween, Rae came home from school with a laminated orange circle in her backpack. It had long, thin black arms and legs stapled to it and it wore a face I could tell she drew herself. I taped it to the front door. And that was it for decorations.

That was the first thing I did wrong.

The second thing I did wrong was not ask families of the wheelchair-and-walker set how they handled this holiday. 

Last year was Rae's first year ringing doorbells. (She didn't mind being called Teeny back then, but she's Rae now.) We were still in New York City; we trick-or-treated in an organized event in our apartment building on the Sunday before Halloween from 3 - 5 pm with all the other kids. We rang only the bells that had paper pumpkins hanging from the doorknobs. Rae was four and dressed as a sparkly black cat in her wheelchair and Bee, then five, equally sparkly, equally black and equally feline, pushed her excitedly from one apartment to the next. It was easy, it was lucrative and it was over in about 45 minutes. Johnny stayed home to distribute lollipops. He wore a creepy mask and blasted Thriller. Back home, we all watched The Nightmare Before Christmas and sang along as we went through our spoils and made a huge pile of everything that wasn't vegan. We'd made a deal before trick-or-treating began: you give me all your candy and I trade you for a super duper present. Bee picked out a fancy dress on Zulily that was black and grey with skulls and spiderwebs. Rae was overjoyed with some plastic food items for her kitchen set. And that was our Halloween in the big city.

Decorations aside, I’d felt ready for this year. I’d gotten the girls' costumes weeks in advance. No thought whatsoever went into this; we spotted Pikachu costumes at TJ Maxx early one morning in September. Newly minted Pokémon fans, they were immediately overjoyed and decided on the spot they both wanted to be the same thing again. $40 later, I was happy to be done with costume shopping. We made plans to meet up with friends and their kids in a part of town known for its Halloween decorations. I marveled at photos of other people's children in the pre-game events and noticed all the wheelchair costumes. Some were complicated constructions of trains or castles that I would never in a million years be able to make, but my favorite costume of all was a girl in a power wheelchair wearing an uncomplicated but impressive jellyfish costume (think white outfit, clear plastic umbrella, white streamers, blue Christmas lights). You see, I did lots of thinking about Halloween. But I didn't think enough about Rae. 

She and Bee came home from school on Halloween day all excited to get going. We got them into their costumes, put on their makeup and piled into the car. I hesitated for a second and then got back out of the car and ran upstairs. I plopped Bee's purple wig on my head. I grabbed a pair of butterfly wings that hadn't been used in forever and stuck my arms through the straps that felt tight over my hoodie and vest. I borrowed a wand that someone gave Rae for her birthday and used Bee’s glittery pink lip gloss. Voila, I was a fairy. Without even looking in a mirror, I got back in the car. Before I pulled out of the driveway, I threw the car back into park. What about when people trick or treat us? I ran back into the house and looked around. I found a Sharpie in a drawer and plucked a paper towel roll out of the paper recycling. I flattened it with my hands. We're out trick or treating too! I scribbled. Please take a few, and happy Halloween! I dumped 120 lollipops into a rayon pumpkin and set it on the front step. I taped my tiny sign to the door and raced back to the car. Okay, I breathed. This time I'm really ready. Half an hour later we were deep into conversation and pizza at our friends' house when Rae looked at me in alarm. "Where's my walker?" she demanded. "I want my walker!" 

Fuck. It was at home. I tried to explain to her that we didn't need it, that I would carry her, that she would get so tired trying to run from house to house with the other kids in her walker and she wouldn't be able to carry her bag of candy. She blinked. "I want my walker!" she repeated. Our host tried to be helpful. She offered Rae a stroller. "I want my walker," she repeated. She set her jaw. A wagon. A red plastic car with a handle. A blue electric car. Rae just stared at her. "I said, I want my walker!" 

I drove back to our house and got the fucking walker. I made it back just in time to head out with the others. Rae's face lit up when I came through the door. "My walker!" she exclaimed. And out we went, but I grabbed the baby carrier just in case. 

It was twilight. The houses were lit up and the decorations were wild and spooky. The kids were all bouncing up and down with anticipation. I felt a wave of genuine excitement. Ready everyone? Our host called to the pack of preschoolers and first graders in our group. We're going to hit that yellow house first. That one over there with the bats hanging from the porch. Yep, that one. Ready? Ring the bell when you get there. Set? Say trick or treat and then say thank you! Go! 

Off they went. Within seconds, Rae was left in the dust. "Hurry, hurry!" I urged her, pointing at the yellow house. "Bee is already up there!"

Two houses in and she was sweating and panting and giving up. "I don't want my walker," she announced. She held out her arms. "I want you to carry me," she said. 

Babywearing is not for everyone. I loved it. I had a bunch of different wraps and carriers and I went to classes on various ties and knots. I wore my kids on my chest, on my back, on my hip. I wore them while they slept, while they nursed, while I worked, while I walked, while I danced. I wore them night and day. But wearing a five year old is an entirely different thing. Even if you have a carrier that handles her weight. Even if you loosen the straps as far as they go. It’s just not that easy. Rae’s legs don’t open more than a few inches, so I have to wear her sidesaddle. Picture me carrying a five year old child as though I were carrying my wife over the threshold. She’s strapped to me with her right hip digging into me just left of my navel, her right arm is thrown around my neck, her two legs packed tightly into the carrier, dangling awkwardly at my right side. Because I have yet to find a carrier that naturally accommodates this position, her legs become painful unless I support her with one arm under her knees and the other around her waist. Her head is level with mine. It’s like the longest most awkward and uncomfortable hug and we both love it and hate it. This Halloween, she hated it but she hated not being able to keep up in her walker even more.

For the next fifteen or so houses, I carried all 36 pounds, 37 inches and five years of her bossy little self. She was buckled in tightly, strapped to my chest, urging me on like a little parrot using my exact words from earlier. "Hurry, hurry! Bee is already up there!" she repeated over and over. She banged a fist on my shoulder. I could barely see over her head; every time she turned to look at something, I got a mouthful of hair. Unable to look down, I tripped repeatedly over the littlest of our pack as I went up and down people's front steps in the dark, trying to feel my way and avoid getting her legs caught in railings and fences. Rae was tucked under her costume and inside her coat and strapped into the carrier and snuggled in my arms, so her leg braces were barely visible, her tiny voice barely audible. I stood at people’s doors awkwardly, prompting Rae to say please and thank you and to tell people what she was dressed as to fill the pauses while they pretended to look at their candy dishes, trying to work out why this nearly elementary-school-aged child needed her mother to carry her. In the 25 seconds we shared in their doorways, I could see some semblance of understanding dawn on their faces. They tried to be helpful. They complimented her completely hidden costume. They made small talk. One or two offered me a glass of wine. Mostly they pushed chocolate on me. "Go on, you take some too," they pressed as Rae reached for a piece. "You look like you could use it. Take your pick!" 

Johnny and I took turns at this for about two hours. Other kids in our group began to get tuckered out; one by one they took seats in wagons, strollers, plastic cars. Parents drained the last of the adult beverages they all carried in their red Solo cups as their kids yawned and whined. Thumbs went into mouths. Masks and hats came off and were handed to moms and dads. Coats were pulled close. I sagged under the weight of my bewildered younger child as I struggled to hold the hand of my exhausted older child. Our new, kind friends noticed and offered to help. Want me to carry her for a bit? Here, let me take that bag from you. Can I get you a beer? Bee and Rae clung to me. No thanks, I said again and again. I bit my lip to remind myself that self-pity gets me nowhere. My tired, clumsy fingers pinched her leg accidentally when I took her from Johnny and tried to buckle her back in and she cried out; I just shifted her from one hip to the other for another ten minutes. Johnny tried to help as much as he could but he was spent too, and we both breathed a sigh of relief when our host, now leading us in the pitch black darkness with a headlamp strapped to her head like a level five spelunker, announced that the house with the big inflatable dragons on the lawn would be our last. Well you sure got your steps in today! one sweet mom joked, patting me on the shoulder. I wish they gave me extra points for steps carrying a forty pound bowling ball on one hip! I joked back. 

In the car on the way home, the girls compared the contents of their bags. Bee's was twice as heavy as Rae's. Look how much candy I got, she crowed. I got so much stuff! You know I'm taking it, I reminded her. Remember the trade. I know, she said. It was just fun to get. Besides, we get to have all the leftover lollipops from our house, she said. Oooh I love lollipops, Rae chimed in as I pulled into the driveway and they unbuckled their seat belts. When we discovered the rayon pumpkin, empty and on its side about eight inches from the front step, half a dozen stray lollipops scattered about the stone path leading to our door, the girls cried. Someone stole our lollipops! Why would they do that, Mama? They were so tired that they didn't even wait for an answer, which is good because I didn't have one. I was hurt, insulted, betrayed. This is a nice town. Who would do that? I thought. 

What a terrible Halloween. What could I have done differently? How could I have made this easier for Rae and for me?

Nowadays, Rae uses her walker all day long, but she tires easily and takes lots of breaks. She can’t go far. She doesn’t know how to brake and she has trouble steering, which means she can’t keep herself safe. We are a family of walkers who could make an entire afternoon out of running an errand on foot. Ambling family constitutionals are completely out of the question with Rae. She uses her wheelchair every day, but only to get to and from school. I try to get her to use it more, but she doesn’t see it as an option. “No, in my walker!” she insists when I complain that I want to go for a walk. Her stubbornness feels impermeable and I’ve fallen for it. Like the time I said "Okay, we can leave it home," when we packed for two weeks on the Cape earlier this year. I am still paying for that one in herniated discs in my cervical spine that just won’t quit. But when I insist, that wheelchair really does come in handy. Like the time we spent the day in Central Park doing a fundraising walk for disability awareness. Like the time we went to Disneyland and spent 13 hours going from one ride to another and another. Like anytime we have flown or gone anywhere that I was concerned about crowds, lines, foot traffic, exhaustion or all of the above.

The great thing about wheelchairs is that they are unmissable, their rider’s disability unquestionable. No child uses a wheelchair unless they absolutely must. When people see me pushing my tiny blonde girl in her sparkly pink Zippie, they tend to give us a wide berth. They smile more. They sometimes let us skip lines at important places like Disney and public bathrooms. They don't ask personal questions. They are way more patient with us. Actually getting her into the wheelchair can be a huge victory that makes my life a million times easier… provided that wherever we are headed is accessible, of course.

Unsurprisingly, not a single driveway, porch, walkway or front door that we trick or treated this year was accessible. I didn't actually expect any to be. Not one of the generally delightful, friendly, kid-loving people who answered their doors to find our pack waiting there came down to ground level to meet her, but I'd bet you ten bucks that they would have if she'd been in her wheelchair because they'd have been able to see her from a distance. 

I'm asking for a Halloween do-over.

Next year I promise to try to decorate the house and our property and I promise not to rip it all down in frustration when I think it looks like crap.
Next year I promise to put more effort into their costumes, and my own. 
Next year I promise to find a way to have someone home to give out treats.
Next year I promise to set expectations for their trade-in presents, something I completely forgot to do this year and ended up hastily buying $100 worth of stuff (really cool stuff, but still, just stuff) at Barnes & Noble because I promised I'd have gifts ready to swap for their booty.
Next year I promise not to book a work trip leaving at 8:30 pm Halloween night after putting my overtired kiddos to bed.
Next year I am going to start prepping Rae way in advance about how it's all going to go down so there's no last minute I-want-my-walker tantrum and there's no giving into unrealistic demands because she's ready and I am ready and we are on the same page. 
And I know that next year I will likely as not feel just as uninspired and unprepared as I did this year, so while I'm asking for a do-over, I'm not asking for miracles. I know myself. I'm never going to be creative or crafty and I'm never going to have lots of time on my hands. 

So next year, we are all going to be jellyfish.  

Wednesday, August 24, 2016

What Are You Now?

Today a colleague turned to me and asked, so what are you now? 

I looked at her blankly. What do you mean? You know, she said. You were a New Yorker. What are you now... What do they call it in Massachusetts? Are you a Massachusetts-ian? I thought about it for a moment. I honestly didn't know, and it made me uncomfortable. I'm just a Masshole, I joked. But inside I felt slightly sick. Am I not still a New Yorker?

(I looked it up, by the way, and it's either a Bay Stater or a Massachusettsan.) 

It's been an eternity since my last post. We have been busy shutting down our lives in New York City and getting all of Teeny's medical and therapeutic services, all of both girls' activities and schools, everything we own and our entire lives uprooted to a brand new setting. We closed on our house about six weeks ago. Looking back at all we have done to get where we are is exhausting, because now almost everything in our lives is different. New house. (A house!) New town. (A town!) New schools. (Public!) New therapies. New doctors, new policies, new service providers. New people in our lives. Not a new job, but a very new way of doing it. New new new new new if I hear that word one more time I will just implode into an overwhelmed heap of introverted leave-me-alone. 

The best part is that we have everything. Really. Our little house sits on an acre of land, much of which is wooded, wild and brambly, and even though we are in a thickly settled area a block from a school in one direction and a block from a horse farm and half a dozen tiny businesses in the other, three miles from the town center and twenty miles from one of the biggest cities in the northeast, when we sit on our deck, we are in the middle of nowhere. The trees are tall and thick, hiding nearly all evidence of neighbors and neighborhood. Hilly, desolate hiking trails, an old, out-of-use railroad track and a big boating pond are within walking distance. Occasionally a dog barks far off in the distance to remind us that we are not as isolated as we think we are, which is both a disappointment and a relief. The birds are noisy and enthusiastic about the feeders we have set up for them. The local chipmunks, hungry and thinking about the winter, do their best to stuff their cheeks with bird seed before the girls catch them and shriek excitedly, gleefully, to shoo them away. We have plants. A shrub! Flowers. Basil, thyme, a green pepper. My thumb is not green; we water regularly, check for new leaves dutifully and hope for the best. Sap from a tree I cannot identify drips on my new car; spiders spin webs in the front bushes. The wind is whispery. We sometimes have clouds that take all sorts of shapes; on clear nights we have thousands and thousands of stars. The longer I look, the more I see. I could lie on the deck forever, soaking it all in. It is easy to understand why so many writers have made this neck of the woods their home. The muse is with me, too, out here on my back deck. I have had many happy places over the years but never one I actually lived in. Now, my happy place is my home and that is probably the best feeling I've had in the entire world. I'm like Dorothy: there's no place like home.

The first night in the house, Bee was so tired from all the activity that she drifted off before I could even kiss her. I crossed the room and knelt down to kiss Teeny, whose big eyes were still wide. Mama, she whispered. I can't sleep here. Her lip was quivering. In the darkness I could see she was about to cry. Why not, baby girl? Because, she started, and thought about how to formulate her words. Her voice was shaking and she reached out to me, opening her arms. Because I don't love it yet, she said quietly. She blinked, and the tears spilled over her cheeks. Aw baby, I murmured, and pulled her close. I stroked her hair, her forehead. I held her until she too began to drift off. I felt sad because I did love it and I wanted her to love it too.

Three days later, Bee was spreading her wings, zooming from one room to the next, running up the stairs to her room, lugging bags of her stuff down to the basement, frolicking on the deck and scaring off the cardinal family that visits every morning. She stopped long enough to exclaim to me, I love it here! I don't want to go back to New York ever again. Can we stay here? She flew through the house, making me think of a dog marking its territory. And Teeny, always listening, always copying her sister, threw her arms out and chimed in too. I love this house now! I don't like New York anymore. I remember thinking, well, that was easier than I thought it would be. Sure, Bee, I smiled. I love it here too. And I breathed a sigh of relief and I turned to Johnny and said, Yes! We did it! 

In the month and a half since then, I have retold that story countless times. Oh it's been great! I say to anyone who asks. Can you believe it? It only took three days to go from wide eyes in the night to never wanting to go back. The kids adjusted so quickly! Yeah, I'm traveling a ton for work but it's totally fine! Johnny loves it too! NBD!

Yeah, yeah. I know. I was silly to think it would be that easy. 

About two weeks ago the tears started. Shyness invaded. Moodiness.  At times our six year old transforms into an unfamiliar beast who storms the house with eyes that roll like a teenager's, a stomping foot, a balled fist and a sharp, whining voice like Veruca Salt's. My reaction to this is not always one I am proud of. When I am being my best self, I ask hey, what's going on with you, kiddo? in the calmest voice I can muster. I don't know, she sobs, suddenly a puddle of tears and sweaty emotion, climbing into my arms like when she was a toddler and could only get closer to me if she unzipped my skin and nestled into my bones. Mama, I am all mixed up.

I relate. I am all mixed up too, kid. We have traded an invisible life in a diverse, bustling, crowded city for life in a quiet town where everyone looks the same. We used to hurry along without stopping to look up, and now we take our time, looking around at all that space, breathing the country air. It's so green! And now I can't wait for New England in the fall. In the meantime though, I have weeds to pull, flowers to water, scraps to compost. I have furniture to assemble, paint colors to select. I am 43 years old and learning about septic systems, about tree sap, about the surprising complexity (to say nothing of the expense) of trash pickup. I stand in my driveway in the evenings and survey the property and all the things that need to be fixed and renovated and reworked and I don't have the first clue how to start. It feels like I have an awful lot to learn.

The people we have met are nice. No, better. Nice is an understatement. They are amazing. We have been embraced strong and hard by a few families with special needs kiddos, families who get it. We have had a number of play dates, ones that we actually enjoy and we come home and look at each other and say, I think I could be friends with that person. But still, I worry that they won't want to be friends with me. I am too weird, too poor, too tattooed, too progressive, too vegan, too unavailable, too employed, too sober, too uptight, too serious. And then I remember that I already have friends who love me perhaps in spite of or perhaps because of all these things and I made the choice to leave them and here I am in the most beautiful place in the world but I feel like no one here gets me. Yet. But the evil voice in my head hisses: I am not one of them. I'll never be anything but an outsider. 

We make an effort with our neighbors. We greet the letter carrier, the trash collectors, the FedEx woman, the dozens of contractors, delivery people, house cleaners we see on our street every day. We say hello to every single person we pass. We wave. We smile. We small talk until our faces crack. Oh it's really such a pleasure to meet you. Yes, the house halfway down on the right. That's the one! Awww, hiya buddy! He's so cute, what's his name? Nope, we don't have a dog. Yes, from New York. Uh-huh, we lived right in the city! In Manhattan! No, not on the Upper West Side. We lived in Harlem. Yep, you're right, it sure is changing quickly there. No, they went to private school. Oh yes, my older daughter will be starting there in the fall too! No, we haven't joined the rec center yet, but we did sign one of our girls up for piano lessons. The other one has a neurological disorder; we take her to a number of therapeutic activities after school. Yes, she uses a walker on short distances now. She's such a great kid, she sure is. Yes, I do actually work. My spouse stays home with the girls because I travel quite a bit. No, we don't have a contractor yet, but could you recommend a plumber? On and on and on and all the while my eyes are wide with house envy and I try not to react at the enormous homes with their museum-worthy landscaping, their beautiful showers that work, their finished basements, their centrally air conditioned bedrooms, their renovated kitchens and their garages and the luxury cars within. And I feel ugly all of a sudden because I feel greedy and entitled to more than I have and more than I need when having less never bothered me before. I have never been especially materialistic, I remind myself, and I remember the time not so very long ago I when I lived in a 750 square foot apartment with my spouse, my two babies and sometimes two cats, sometimes three, and I saw a meme that said "Some people are so poor, all they have is money" and I smiled to myself because I had so much love in my life that I felt it even when I was up late at night playing with a checkbook that just wouldn't fucking balance but I knew it would be okay because I was happily partnered with someone who worships the very ground I walk on and my kids are enthusiastic about every single thing and they even eat broccoli without putting up too much of a fight and I have a job I absolutely adore and I never ever thought I'd be where I am in life and who cares if my apartment is small and I ask for hand me downs and we can't afford to go on vacations because I made all this happen and I love every minute. So why am I having house envy now? Why am I scared to invite people over? Why do I think that their lives are easier or better or more loving than mine for a second? For even a single second? I don't know. But I do. 

The girls are growing tall. They are tan from beach vacations, the new neighbors' pool, weekend picnics on the deck. They are ready for school and I am dutifully adding orientations and welcome sessions and pizza parties and ice cream socials and moms nights out to my calendar. And suddenly I think about being a Massachusettsian or whatever it is and wonder, who in the world am I really?

Right now, I am not really sure. So I asked my spouse. 

You're intelligent, he said. Hard working. A dedicated, loving mother. You love to read; especially novels and memoirs. You read about real life, about people. You like thinking about other people's lives. You're extremely organized and you get a lot of stuff done very quickly. You are too tightly wound and don't laugh or relax enough. You are chatty and friendly and outoging but you snap at people when they try to talk to you when you are engrossed else. You don't sleep enough. You're passionate and caring. And you're hot and I love you like crazy.

Yeah, I said. But who am I? I asked again. I don't know what any of this means. He gave me a look and went back to his book.

I know this: I am address labels on my unread New Yorker magazines, carried everywhere I go and ultimately tossed in hotel room garbage pails because I just didn't get to them. I am brand new frequent flyer numbers and hotel rewards program usernames. I am a name on a mailing list that someone sold to someone when we bought our house; I am the piles and piles of personally addressed letters and promotional material from businesses in a 50-mile radius begging me to let them offer me a quote to fix my this, renovate my that. I am exercise gear that I bring home from a work trip still clean because I just didn't find the time to run. I am the new kid in a town that is wonderful and beautiful and welcoming but where I have no friends and where the good coffee is not walkable and where people stare at me because I am not blonde and thin and beautiful and wealthy and where I feel like an outsider. I am the dream of having nothing to do but sit on my deck and read a novel and drink tea and hug my children. I am how I think my neighbors might see me: alternately the cool, hardworking, sophisticated city slicker, maybe a little artsy, maybe a little mysterious, maybe a little edgy; alternately the weird girl from Beetlejuice or maybe Girl, Interrupted only grown up now, but still crazy. And then I am how I see myself, which is tired and fat and always struggling to do more, be more, have more. I have gone from being someone who felt confident and satisfied to someone who is just not good enough. 

So now it's late and I still have a couple emails to finish so instead of thinking about this, writing about it, or better yet just shutting all my shit down and going the fuck to sleep, I head back upstairs where I am too tired to focus well so I internet-shop for an hour or more until my spouse notices that I am missing and comes to hunt me down and drag me -- literally kicking and screaming because I'm an adult and don't I get to decide my own bedtime? -- to bed, where I act like I'm five, carrying on that I'm not tired and I just need to read this and order that and I'll go make a snack and then it's after midnight and before I know it my happy and beautiful and brave and brilliant six year old's face is in mine and she's pulling my eyelids open and Mama, can we go for a bike ride? 

Nothing really makes sense to me right now, but these bike rides are everything to me and symbolic of so much. Together, she and I can take on the unknown. Early mornings in our town are quiet and beautiful and we ride and ride and ride. It doesn't matter who we are and where we come from. In those moments, the world is ours.