(Tell Me What Inclusion Looks Like!) This Is What Inclusion Looks Like!

A few weeks ago Freyja and I visited a friend who'd had surgery on his jaw. In order to recover, he had to have his jaw wired shut. Talking was understandably challenging; he spoke through gritted teeth with a wet hiss and a mumble. She looked at him quizzically. "You talk weird!" she said to him. "You talk weird too!" I reminded her. She looked at me in shock. "No I don't, Mama!"
She doesn't know, I realized. Or maybe she doesn't care. As she says over and over, "I'm just Freyja!" In many ways, she's just a kid like your kid and your kid and your kid, only her brain doesn't talk to her body the way your kids' brains do. And she belongs in this classroom and in this school and in this world just like everyone else and she has never been taught anything different.
Her new school is great. It's a public school. Her sister goes there too; they are in the same school for the first time in their lives. The district has wheelchair accessible yellow school buses so they are now riding together. She has a lovely new 1:1 who meets her at our house in the morning and rides the bus too. She works with Freyja all day long, providing individualized instruction when she needs it. Freyja receives many services that she needs: PT, OT, speech, adaptive PE and literacy sessions. And her school has been supportive since we began the transition process last spring. They are doing everything they can to ensure that she is safe and that she has all the tools she needs to succeed. They've watched her walk, measured how well she can reach the sink, the water fountain, the toilet. They've arranged for adaptive seating and adaptive step stools. She's been evaluated for adaptive technology and will be learning to keyboard as the other kiddos learn to write. She is learning to navigate the school with the elevator and ramps, since stairs take her a very long time. And now I have another reason why it's so awesome.
Last Wednesday was her first day. I was a little distracted all day long because I was worried about how she would do. So when my phone rang while I was at a work lunch with five people from out of town, and it was the school's number, I ran out of the restaurant in a panic. "Everything's fine," the voice said. It was the school psychologist. "She's doing great so far." She was calling because some kids already had questions, she said, and she wanted some advice for how to handle it.
I told her that last winter we'd visited her preschool classroom. We talked about her disability openly with the kiddos. We answered their questions, reassuring them that the van she arrived in was not an ambulance, that she was not sick, that she likes the same things as most kids do. She gave all the kids a turn in her walker and they squealed with delight, zooming around the room with it, hopping on one leg to try to get a sense of what it feels like to rely on your arms to walk. It was a good visit, I told her, and we could do something like that again if it's helpful. "Hmmm," she said, thinking. "I don't know if having you come in is the right thing." She paused. "What do you think?"
Well, why don't you ask Freyja? I responded, and she said that was a great idea. An hour later she called back and told me that Freyja was really excited to have us come in with her. So that's what we did.
It made me so happy that they asked Freyja her opinion. It made me so happy that this came up on the first day of school and not halfway through the year. It made me so happy that the school staff wanted to address the other kids' curiosity and questions openly and with respect. This is the kind of thing that encourages inclusivity. It normalizes difference.
When we arrived, the kids were seated on the floor. There were lots of grownups in the room, including the brand new principal. We sat right down on the floor. I read a book I love called Susan Laughs. This book talks about all the things that Susan does and likes and feels. She sings and swims and gets angry and sad and laughs and dresses up and does all the things kids do. It's not until the last page that you see that she uses a wheelchair. I asked if any of the kids like to do ballet and go swimming and play dress up. Hands flew up and many kids started telling us about their swim lessons, their summer vacations, their dance classes, their Batman costume. And then we got to say, well guess what? Freyja loves to dance and to swim and to play dress up too! She's just like you!
We showed the class her braces and her walker and asked them if they knew what they were for. Freyja explained that they both help her walk because her balance isn't good and her legs aren't that strong. A girl with a cast on her arm talked about how long she has to wear it to keep her wrist straight, and I told them that Freyja will likely wear braces on her legs for life to keep her ankles straight. I explained that she isn't sick. Nothing she has is contagious. That they can expect her to apologize if she bonks into them with her walker. They took turns trying her walker and a few asked to try the wheelchair too. Some of the grownups asked Freyja pointed questions about how she gets around the school, what she needs, and how the other kiddos could help her. She answered well and I was proud.
On our way out, the principal caught up with me. "You used to be a teacher, right?" he asked. I admitted that yes, I was. He smiled and said, "it was obvious."
But it wasn't. It doesn't matter that I was a teacher -- my teaching experience is with kids way older than these. I know nothing about early childhood education. What I do know is that we never pretend that Freyja is typical. It shocks me that some families are "in the closet" about their kids' disabilities. That doesn't help anyone! Why pretend that your kid is something she really isn't? Why pretend that everything is a certain kind of normal when being open and honest and visible makes being atypical normal too? When I hear kids whispering about her walker or her braces or her limp, we always stop and talk to them respectfully. We invite questions. We let kids take a spin with the walker or in the wheelchair. I don't reprimand them for talking about my kid or pretend I don't hear them. Kids are curious and Freyja loves to tell them about herself. I mean, her walker is really cool -- it's pink and shiny and looks like a weird sort of scooter. Her braces are interesting. She herself is fascinating. So why not let them ask? Freyja knows how to answer these questions by herself now. And she has no idea that she's radically different from anyone else because when it comes down to it, she's really not.

Can you tell which one is the atypical kid's?

Freyja started kindergarten!

Freyja started kindergarten last Wednesday.

I don't think I will ever get tired of saying that.

Freyja. Started. KINDERGARTEN. In our local mainstream public school. She's in school with her sister.  She took the bus there with her sister. She is in public school. In the same school as her sister. We are taking it a year at a time, yes. But we are taking it! 

The night before the first day of school, I wrote my girls letters. I read them out loud as they got ready that next morning. As I read them, Johnny made barfing noises in the background because they were so cheesy. All the same, I want to include them here.

Here's Freyja's:

Dear Freyja, 

It's been such a joy to watch you prepare for kindergarten, and here we are the night before your first day. You've worked so hard for this moment and you've defied all the odds to get here. You are in a mainstream public school! You have a small army of people to support you and ensure your success. You are determined and tenacious and you don't know failure. You are the you-est person I have ever met, so self aware and so unwavering in your very Freyja-ness. 

My daring precious peanut, I wish you knew how many people are in your corner and have been since your birth. I wish you knew how many hearts you have touched and how many hands have supported you every step of the way. You are so loved and we are proud beyond words of who you are and all you have accomplished. 

We don't yet know where you will lead us in the future. We don't know what you will need and how you will grow and change. But I do know that tomorrow you will start kindergarten and at the end of the month you will turn six. You will have already accomplished more in your short life so far than many people much older than you. We are so excited to be along for your adventure. I love being your mother with all my heart and soul. And I love you.

Love love love,

Mama

And Thora's:

Dear Thora, 

I'm writing to you the day before school starts. You are about to start second grade. Your hair is getting long. You just got your first skateboard, and you already ride it competently. You are an artist. You still have not lost a tooth. You are seven and a half and you are beautiful, smart, creative, brave, kind, silly, and wonderful. You are the center of my world and I love you and am so proud of you.

In second grade you will learn so much. You will read more and do more math. You are a Bay Stater now, and you'll learn more about your adopted hometown and state. You will do more art, more music. We will ride our bikes and you will skateboard with Daddy until it's too cold. Your hair will grow longer if you promise to keep brushing it, and you will grow taller. You might even lose a tooth or two.

You will make more friends. You will work hard and play hard. And I hope you continue to fall in love with life. You are precious to me and to the whole universe. Enjoy school, enjoy life, enjoy being you!

I love you to infinity and beyond.

Mama

The Essence of Freyja

Yesterday I thought of something really clever to describe what life with Freyja is like nowadays, but when I sat down at the keyboard much later in the day, that clever thought had vanished. Man, it was good. But you will just have to trust me on that one because it's gone. Poof! My creative juices haven't been flowing much lately and my memory isn't what it used to be. I have aged a thousand years since you last heard from me and it's been a very long time since I have had the willingness to write a word. I have lost and re-gained twenty pounds. I have gone through early but permanent menopause. I have so much neck and shoulder pain that I can't sleep at night. My hair is greyer and greyer and my face is tired and wrinkled. I don't make time for friends and because I'm so bad at it, they don't make time for me either. And I can't say I blame them. To be the kind of parent I need to be, I am now a lousy friend. 

Life is moving really quickly, and Freyja is growing up fast. I know I won't remember things if I don't write them down, and I worry so much that someday she will not be with us that I want to remember every minute. All the good stuff, and the bad too.

Freyja is almost six. She is about to start kindergarten in our local public elementary school. She is no longer Teeny. When I call her almost anything other than Freyja, she corrects me, saying "No! I'm just Freyja!" She loves her name and says it beautifully now. She used to call herself something like "Vaya" and no one understood her when they asked her name. Now she pauses and says proudly and clear as day: "My name is Frey-ah. I am Frey-ah."  

She does occasionally let me call her peanut now. She's still diminutive and adorable, so I insisted
that she answer to something cutesy at least some of the time. I tried out all kinds of nicknames but she would have none of them. Until peanut. She tolerates it and responds to it and reminds me often that she is a really big peanut because she is a big kid, not a little kid anymore. She is. She's my really big delicious and precious peanut. She is a beloved little sister, a charming student, an impressive patient, and the biggest mystery I've ever encountered.

On the one hand, Freyja experiences growth and progress on a daily basis. In the year since we left New York City, we have seen tremendous improvements. She walks -- and runs! -- with her walker. She can somewhat painstakingly go up and down steps while holding on to the railing with both hands. She asks for help and a spotter when she doesn't feel safe or secure. She tells us when she needs assistance, when she wants to be carried, when she's tired and needs a break, when her braces hurt her legs so much they have to come off. But more often than not, she pushes our hands away. I can do it by myself, she says a hundred times a day. Stop it, Mama. I will do it. Don't help me. Under a furrowed brow and through narrowed eyes she makes a face at me and starts whatever she's doing all over again, this time without my interference. Her speech -- both the way she pronounces words and the way in which she expresses herself -- has improved by leaps and bounds. We have conversations. She can retell stories sometimes. She thinks aloud and shares abstract ideas. "Hmmm. Let me think about it," she will say in response to a question, tapping a finger to her chin. She is opinionated. She has favorites and second favorites. At dinner time with the family, she recounts her rose, thorn and bud -- what she liked best about her day, what the worst part of her day was, and what she's looking forward to about tomorrow. She memorizes song lyrics, tries to take turns "reading" aloud (repeating an entire book after me one sentence at a time) and plays I Spy with only the tiniest bit of assistance from her big sister. She lets me brush her hair and sometimes even put pigtails or barrettes in it. She wants to grow it long so she looks like a princess. She puts on lipstick a hundred times a day. She makes up stories all day long. She is the most social of the four of us, fully extroverted and always interested in playing with others. She pretends, she rationalizes, she supposes and dreams. She is witty, often silly, and can take a joke better than I can. All of this is really, really good stuff.

On the other hand, she cannot escape the damage to her brain. We cannot pretend or hope that her cerebellum will heal itself. PCH2A is a serious and usually fatal diagnosis and it will never ever go away. PCH keeps us hyper-aware that maybe it's not worth fighting about those last three pieces of broccoli or slapping her fingers away from her mouth so she doesn't bite her nails or making her walk when she wants to be carried. We hug her a little tighter and sneak in an extra kiss or two at night because we never quite catch our breath from the everpresent fear that one day she might not wake up. We watch our fellow PCH-families bury their babies one after the next, the number of commemorative dragonfly tattoos among my friends list growing almost daily. They don't see Freyja as one of them, but she is. Our friends and family don't see Freyja as one of them, but she is. I don't want to think of Freyja as one of them, but she is. I can't reconcile this happily if not typically developing child with her terminal diagnosis any better than anyone else can, but it doesn't leave my thoughts for a second. Not a single second.

Our now annual visits to the neurologist are like a skeptic going to a fortune teller who is eerily on point. He looks at her like he's gazing into a crystal ball. For the most part, he has no idea what to make of her because there are so few children like her. The diagnosis itself is incredibly rare. Now imagine a child with PCH2A who strangely doesn't seem to fit this dramatic description. That's even rarer. He has no idea what he's looking at when he looks at her. But somehow he knows exactly what we are going to encounter, what she will be like, what her struggles are and aren't, where we should intervene medically and should not. He is always right. 

He is amazed and delighted by her incredible ability. He always invites students, colleagues, visitors of all kinds to our appointments because he wants everyone to see that she exists. He has presented her at conferences and included her in rounds. He says he will write about her someday because she is such an anomaly. She should not be able to do the things she does. But she can and she does, so he tells us to treat her like a typically developing child to the best of our (and her) abilities. At the same time, he warns us to watch for seizures and other concerns. He knows the cerebellum probably better than anyone else on Earth and is always able to tell us what behavioral issues we will encounter, what learning challenges she will have, what in life in general will be difficult for her, because he knows where each of these skills, proficiencies, talents, etc., live in the cerebellum. "And to think the rest of the world thinks the cerebellum only controls motor function!" he scoffed under his breath last week when we reviewed a litany of behavioral and educational concerns. 

In that conversation, he predicted that she will have three major challenges in school. One, her motor deficiencies will be extremely challenging. This we already know. She needs help with most activities of daily living that the average five or six year old can do independently. She is moving to keyboarding because writing is so difficult for her. She exhausts herself by insisting on walking everywhere; she has a pronounced limp and her legs hurt all the time. She can't keep up with others her age. Two, her brain will not be able to handle multi-tasking at all. He's correct. We already see that she can only focus on one thing at a time. When multiple things are happening around her at a time, she becomes overwhelmed and extremely frustrated and can do none of them. She falls apart easily. She needs quiet and a setting in which to concentrate. And three, language processing. This will be her biggest challenge, he says. We knew that from her neuropsychological evaluation already but didn't really understand what it meant. Basically it means no one knows how well she will learn in school. Or, looking at the combination of all three hurdles, if she will learn in school at all. And on top of that, she has twice now thrown herself into a neurological episode of some kind by tantruming so hard that she can't regulate her movements, her body temperature and even her conscious presence. She was so upset and so physically affected that she completely dissociated. Just flat out disappeared. And when I tried to explain this to people I thought might understand, they didn't believe me. 

So, no pressure. After four years of preschool -- one private, two special ed and one integrated, she is finally starting mainstream kindergarten like we always wanted her to. But the deck is stacked against her. The director of special ed for our school district predicts that not only will she not last there and end up with an out of district placement sooner rather than later, but that the LD schools the neuropsychologist suggested we consider for her down the line will not take her. That she will need a school for the multiply disabled. But, she finally agreed, let's try her out in kindergarten. We will give her a chance. Maybe she will surprise us. Who knows really how she will do. So, yeah. No pressure. 

What I want to know is this: How do I deal with special ed directors who think my child is intellectually disabled when her neurologist and neuropsychologist say she is not? How far do I push for her education when I know she may not make it to high school graduation anyway? How am I supposed to balance raising my child like a neuroypical kiddo and knowing that her life will likely not be long? How do I make monthly deposits in her 529 like I do for Thora and also establish a special needs trust as part of our estate plan just in case she outlives us and can't live independently and has no one to care for her? How do I couple teachable moments with the fuck-its I get when she wants more ice cream or another video? Do I prove a point or do I let her have the ice cream because she might die? How do I decide how much to push her in her therapies, how much to fight for her inclusive education, how much to plan for her future and also ensure that her days right now are good ones? How do I internalize that her disability could be a death sentence and also rejoice that she's not unwell enough to qualify for Make-A-Wish when she wants to go to Disneyworld and be a princess among princesses but we can't afford it because we have to save for her uncertain future? How do I feel gratitude for all the wonderfully supportive friends in social-media-land who pile "love" emojis on her cuteness when five minutes after I posted the latest totes adorbs video, she collapses into a seething, infuriated, hysterical heap over not getting to watch the clip of the Frozen characters doing the Thriller dance on YouTube for the eight hundredth time because I said no because I was just sick of hearing it and needed a break? When I hear the neurologist's voice in my head telling me to just give in because her inability to self-regulate and self-soothe make disciplining not worth it sometimes because the discipline is lost on her and she is completely unable to compromise? That I should raise her like a normal little girl -- whatever that means -- but oh yeah, the cerebellum is where fun stuff like autism, ADHD, OCD, ODD and psychosis all live and she will likely exhibit behaviors of all of the above but not really ever be diagnosed explicitly with any of them so the behaviors will be hard to treat, hard to medicate, hard to manage? And when I see that the doctor is right when she's following me around closing doors and drawers obesssively, unpredictably and randomly exhibiting extreme difficulty with change, transition and disruption, and not understanding the meaning of no some of the time, ending up half catatonic from overreacting to that no when ten minutes later I can say no to the same damn thing and she's fine with it. When my other child leaves me notes and letters on my desk for me to find when she's not watching that tell me how sad and frustrated she is that her sister gets so much more of our attention and that even though I get up at 6 am every morning to go bike riding with her and make every effort to ensure that she feels seen and heard and loved every day, I know deep down she's right, that her sister does get more attention? When I earn a decent salary and benefit from so much white middle class privilege but ask for financial aid because I have to put every cent toward her therapies and adaptive activities in the hope that they will make her healthier, stronger, smarter, more resilient, alive. When the world feels like it's unraveling around us because our president is a racist sexist homophobic transphobic disability-phobic piece of shit and I almost regret having children in the first place because I made the stupid assumption that our nation would vote for leaders who would want to leave the world in better shape than they found it and I feel pathetic for feeling the way I do because so many people have it worse? How can I take all of that into consideration and still treat her like a regular kid? I don't know how, but somehow, this is what we do every single day.

And you know what? We do it, but we can't talk about it. And I think that's why I haven't been writing about it. When we talk about Freyja, we talk about how cute she was today. How she's learned the moves to her latest favorite dance, or the lyrics to her latest favorite song. How she asked for a new book at bedtime instead of that goddam fucking ballet book she makes us read 99.9999999% of the time over and over and over. How many views her video got. How her babysitter took her swimming or how she dressed up like a princess or how she wanted to hug the chickens or how well she ate her dinner or swallowed her medicine or whatever. We don't talk about how much effort goes into balancing her future-no-future. When it comes up, we change the subject, we look away, we pick fights with each other over the overdue library book someone forgot to return. We act like it's easy to be her parents, because that is what you do when it's your child and that is what anyone would do, but it isn't easy. It eats away at our hearts and our savings and our self confidence, our relationship and our energy. It crumbles our trust in the world and that things will work out okay. We alternate being so grateful that this child is in our life and so bitterly angry at everyone else for not understanding what we go through. It makes me weary. And then it becomes easier to say nothing, to write nothing. I'm fine, thanks! Yes, she's so cute, isn't she? She's awesome! Never better. 

Today at the end of the yoga class I went to, the instructor read something from a daily Buddhist reader. Initially I was annoyed that he interrupted my savasana, but then I heard something meaningful. "Anything that becomes rare becomes very dear to us. When things are in abundance, we do not even know their value.... What is will always be. What is not, never was and never will be. The essence is always there. You can never destroy the essence. Then what is it that is destroyed? The form that the essence takes. Only the name and form are destroyed." 

All this uncertainty is a part of Freyja's essence, and Freyja's essence is a part of the world. She is, and she will always be. No matter what happens to her, I know the essence of Freyja. And that can never be destroyed. Maybe that's not a fix, but it's a solution. It's the answer that I needed, at least for today's questions. She is, so I don't have to worry about whether someday she will not be. She's here now, and that means she will always be. The essence is always there.

Teeny Tiny Communique

When Teeny first started nursery school, she talked like a cave-baby. Then speech therapy started and we started to see dramatic improvements. Nowadays Teeny tests in the average range for speech, which amazes me because she is hardly articulate and she struggles with pronunciation and clarity. Most of all, she struggles to express her feelings. She doesn't narrate stories, dreams, hopes. She doesn't tell me about her day. All of this depresses me and makes me feel a real lack of hope, but then I see her with her friends in school or on a playdate and she holds her own. When I'm with her I am sometimes struck that I am having a conversation with her, which is something I wasn't sure I'd ever do. 

At four and a half, Teeny is very polite most of the time, saying please and thank you and demonstrating genuine concern when others are upset or sick or hurt. Like the other day when she said sweetly, "Are you okay, Aimee?" and I almost choked on my tea. Of course, she is also very stubborn and even bratty sometimes, like most four-year-olds. But this coupled with the inability to adequately express what's going on behind the pout, the crossed arms, the stuck out lower lip or the furrowed brow can be infuriating. Not just infuriating for me, but for her, too. She can be manipulative like any child her age but she has a striking inability to self-soothe at unpredictable times, which means that she can shrug off one "no," but another can send her into a tailspin of hysteria that lasts half the day. Again, very frustrating for all of us. When she was three, she learned to say "I don't want to," and now that she's four, she's gotten better at expressing what it is that she doesn't want to do, but not quite correctly. This makes me laugh sometimes, because it's so damn cute:

• I don't want to medicine. 
• I don't want to underwear. 
• I don't want to bathtub.

A lot of her obstinacy revolves around food, which often makes me see red. She can go for multiple meals with barely eating a single bite, so I get panicked that she will starve. I work myself into a tizzy making what she says she wants to eat, and then:

I don't want to toast. It's too hot. I don't want to peanut butter and jelly. I don't like it. Nooooo. My belly is full. My mouth is zippered up. I'm done. I'm finished!

She will tell me she "doesn't like" her favorite foods. She will complain of thirst ("Can I have some water please? I promise I won't spill it. Oops. I spilled it just a little bit. I'm sorry, Mama.") but refuse to drink a drop if her water arrives in the wrong cup. She will ask for a specific food, which I prepare in the hopes that she will eat a full meal only to have her turn away from the first forkful of whatever she insisted on having so that I push pasta with red sauce, peanut butter and jelly, grilled cheese or some other sticky, disgusting thing into her hair or her ear. In an attempt to block a spoonful of cereal with soy milk or oatmeal with maple syrup from reaching her mouth, she will send it flying across the room or into my lap. She will sometimes chew a mouthful for five or six long and aggravating minutes, pointing to her mouth and shaking her head when I try to give her another mouthful. Other times, she will press her lips together and refuse a single bite, and then about ninety-five percent of the time if I try again ten minutes later, she opens her mouth happily and eats the whole thing like there was never an issue in the first place. 

She keeps a sharp eye on her sister, which is both wonderful and terrible. What Bee uses skillfully can often be challenging for Teeny's fine motor skills, so I cringe when I hear things like:

• I want to red lipstick!
• Can I do Sharpies? Only on the paper, I promise, Mama.
• I want to ice skates. 

On Saturday mornings they wake up at dawn, so we sometimes bribe them with iPads so we can sleep another hour or so. This is often a total tease for one of us (usually me), because of this: 

Can you find Bubble Guppies on my iPad? (Five minutes later) Ooops, I dropped my iPad. Can you get it please? (Five minutes after that) I don't want to this part. Can you help? Mama? Mamaaaa? Maaaaaamaaaaaa. I don't want to this part. Can you fix it? Maaaaaaaammmmaaaaaaaa.

When they were babies, our girls slept with us, but they have both been sleeping in their own beds for years. Unless they are sick. When either of my kids is sick, I bring her into bed with me so I can listen to how she breathes, get her quickly into the bathroom if need be, take her temperature, give her medicine, etc. Of course the first day she's well enough to go back to her own bed, there's always a protest. Bee will cough weakly and say, see? I'm still sick, Mama. This tugs at my heartstrings a little but I don't fall for it. This past week, Teeny and I have both been really sick and she spent two nights in bed with me, coughing and snotting in my face and in my hair and scooting her feverish little body into mine. So on the third night, I was not at all surprised to hear this:

Can I sleep in your bed? Well, but I'm sick. I'm still siiiick! Mammaaaaa I don't want to own bed.

And since she was well enough to sleep in her own bed, she certainly assumes she would be well enough not to need cough medicine. So this recent little monologue made me laugh:

I don't want to medicine. But I need medicine to feel better. Can I have some cold water in a mama cup? No, in my Bubble Guppies cup. With my purple straw. Because purple is my favorite color! (After getting her cup) See? I feel better!

She knows she has to wear her braces most of the time, she knows she has to hold on with both hands when trying to walk, she knows she can't watch her iPad on school days, and yet she fights us on all of these and more nearly every day. She knows how to blow her nose but won't do it, much preferring to ask me to come wipe her nose every two seconds, like when I'm driving and it's really convenient. She loves to flush the toilet but doesn't get why we want her to close the lid and then flush instead of the other way around. Manipulate, manipulate, manipulate.

When I try to be manipulative back, she outsmarts me. Like the other day when it was something like seven degrees out and I was trying to convince her to wear a hat to the school bus and she wasn't having it. Teeny, want to see your cute hats? Can I show you the cutest one? I asked. She narrowed her eyes at me. I want to see a hat but I don't want to wear it.

And today, when she decided she had to pee the second she was buckled into her car seat and we were ready to roll, she surprised me again. I was exasperated, we were running late. I chided her: "Why didn't you tell me you had to pee when we were still at home?" 

Because, she said, you didn't go in potty with me and then we leaved.

She was right. I had forgotten to sit her on the potty just to try, the way I usually do in the morning. In fact, she even brushed her teeth sitting at the dining room table this morning because I was juggling so much. Outsmarted again. 

The good news is that she is working through a lot of her difficulties in play therapy, which is basically counseling for the pre-verbal set. She works through a lot of issues around self-soothing, transitions and her growing frustration about what her body will and won't do with her school psychologist. They use dolls mostly, but also play games too, and they work through a lot of feelings. Nowadays anyone in our house can expect to hear Teeny say "You be mama. I be baby" a dozen times a day. She likes to cook in her play kitchen, pack her backpack full and pretend she's traveling, drive her dolls to Nana's house, stick me in her bed so she can tuck me in, act out mama-and-baby scenarios with her mermaids in the bathtub, and so on.

To entertain myself, I compiled a list of other things that have come out of her mouth in the past couple of weeks. I wanted to remind myself that she is speaking in mostly complete and somewhat sophisticated sentences, that she is clearly watching her adult and peer models and copying words from them, that she understands synonyms and antonyms and has multiple ways to say the same thing, that she is expressing abstract thought and not just concrete needs and best of all, that she has a sense of humor. I was pretty impressed with what I collected. For example:

• What Dada and Bee doin'? Let's go check it out!
• It's broken, Mama. It's not working.
• Look, my booty's hanging out of my pants!
• Ummmm I don't think so.
• Give me your phone. I want to see pictures of Teeny.
• Hey! I'm not talkin' to you!
• Maybe later. Leave me alone. I'm busy!
• You can't find it? Aww. That sucks.
• Let me think about it.
• Mama, I have to pee. Really really now!
• Can you give my mermaid ponytails please? Thank you!! (Two seconds later) Can you take out her ponytails now?
• What the fuck?
• It's morning time and I'm awake! I don't want to sleep anymore. Can I have my iPad?
• Can I stand up on the chair? (And then, after being told 100000 times that it's not safe): It's totally safe, Mama. 
• Are we going in the car? Let's take the train! I like the 3 train, not the 2 train. But the train is loud. So let's take the bus. No. I want train. I like the lights.
• Wait! I'm not strapped into my wheelchair! 

And so on.

Best of all, I love that she has come to depend on certain rituals. When I leave for work in the morning she crawls to the door and watches as I put my coat on. "Wait!" she cries when I pick up my bag. She holds out her arms to me. "Kiss and hug!" and then as I walk out, "Another hug! And kiss too." I love this and could go back ten times for more kisses and hugs. Every night when we tuck her in, I whisper in her ear, telling her about all the things she has going on the next day. She loves this part of bedtime and if I forget, she will call me back and ask "What we doin' tomorrow? Do I have school tomorrow? And then swim class? No? Do I have ballet? And then, what? And after that, what?" And then I hug her and kiss her and she hugs me and kisses me and as I leave, she calls out, "Goodnight! See you in the morning! Sleep well. Have sweet dreams!"

Start Spreadin' The News... Part Three

For Bee, the cutthroat NYC kindergarten process, which I wrote about extensively here and here, took seven months and aged me 20 years. Seven months of research, open houses, interviews, playdates, IQ tests, applications, essays, financial aid forms, check writing, some groveling and definitely too much wine drinking, and Bee was finally accepted to a school we felt we could love and could love her. She was in and they came through with a generous-for-a-private-school tuition assistance package that we felt, with some nips here and tucks there, we could make work. 

This year, two months into the process, I had a meltdown. In short, I not only refused to participate, I made the conscious decision to flee.

Teeny is sixteen months younger than Bee but in New York City they would be only one grade apart. Because her birthday is in the fall, the Department of Education wants to push Teeny into kindergarten at the age of four, not five. New York City's DOE follows a calendar year, so all kids turning five on or before December 31 of that year must be enrolled in kindergarten. So in addition to being one of the smallest kids in her class physically -- whatever class that might end up being -- she would also be one of the youngest kids. Every time Bee went to an interview or a playdate at a prospective school, I tried to imagine Teeny going through the same thing and I just couldn't. There's no way she'd be ready. 

If the journey to kindergarten is difficult for the average five-year-old New Yorker, imagine what it's like for a kid with special needs. Now take that and imagine what it's like for a kid with a neurological disorder so rare that there are maybe 100 cases worldwide, and now imagine that kid unable to run or walk or hang up her own jacket and almost a full year younger than everyone else in her class. 

There are 127 private special education elementary schools in New York City that serve elementary school age kids with 13 different classifications of disability. My guess is that Teeny will be classified with "other health impairment" (OHI), which is pretty uncommon so the schools don't cater to it. The overwhelming majority of these schools are for kids with learning disabilities or who are on the spectrum. Those schools are not as supportive as Teeny will need. Then there are the schools for kids with emotional disturbances, also not for her, and finally the schools for the multiply disabled, which are too supportive and not academic enough for her. Then there are over 1,800 public schools in the five boroughs, all of which are supposed to accommodate the needs of the students zoned to them. Unfortunately for Teeny, we live in the worst district in the city, with wildly underperforming schools that cannot adequately meet the needs of even their neurotypical children. And our neighborhood school, the one we're zoned to, is not "barrier-free," which for us means it isn't wheelchair accessible, and therefore even if their academics were top-notch and their therapies extensive and exhaustive, it simply cannot accommodate Teeny. 

The idea of having to go through this same ringer again a second time with even fewer prospects for a child I believe in my bones should not be going into kindergarten next year made me feel weak. I had done lots of research on special ed private schools while we were looking at schools for Bee, and what I learned is that Teeny, because of her particular set of needs, has even fewer options than Bee did.  For Bee, we had narrowed the list down to about twelve and in the end applied to them all. 

For Teeny, we had two crappy choices: one, be prepared to front up to $120,000 per year for tuition at one school that accepts only four special needs kids like Teeny per year, or two, move to a particular district on the Upper West Side to improve our chances of getting picked in the lottery for admission to a public school that has a program for kids with physical disabilities. 

So when the summer of 2015 rolled around and the emails and meeting invites started to come in for the Turning 5 process -- the DOE's lingo for that same awful cutthroat rite of passage but for the special ed preschool set -- I almost felt like I was experiencing PTSD. 

Since the research had turned up so few leads, we called NYC's highest profile special needs attorney and set up a consult. With her $450 per hour clock ticking, we asked her what to do. After listening to our story and looking over some of the documents we'd brought along, she told us I'd been right. She named those same two options, and she admitted that neither were ideal. We chatted about a handful of other schools, but she agreed that all of them were pretty inappropriate for Teeny. It was sobering when she said very seriously that there was a very real risk of not getting a good placement. In her opinion, our best bet would be just to move. I laughed. But she wasn't smiling. 

Then I went to a lecture by a prominent NYC special needs advocate. I lingered after everyone else, hoping to get a different answer from her. All my kids, she said, go to one of the two schools you've already identified. So if those won't work for you, I suggest you seriously think about getting out of the city. Again! I really couldn't believe it. 

We do not have $120,000 to front for one year of tuition, but even if we did, that school got crossed off my list when I called them and they refused to talk to me because of Teeny's birthday. They said they use the ISAAGNY cutoff dates and not the DOE dates because they are a private school that occasionally opens its doors to special ed students, not a special ed school for kids placed there by the DOE. So since she wasn't going to be 5 by September 1, she would not be considered for admission. So the DOE was punishing her for being too old to stay back but this particular school was punishing her for being too young to move ahead. 

It might have been easier to come up with $120,000 than to actually entertain the thought of moving into the Upper West Side district that houses the public school that was our other option because that neighborhood is far pricier than ours -- far more than $120,000 more in equivalent real estate, anyway. Be that as it may, I thought I might have a shot at getting her in from out of district based on her charm and level of school readiness. I worked every single angle. I emailed, called and texted everyone I knew who had a kid or knew of someone who had a kid at that school. I tried to reach out to the administration via my CPSE coordinator. I showed up with my adorable kid in her adorable wheelchair at their spring fair and I talked to everyone with a name tag. With all I had, I kept trying for six months. And some people replied to me because they were nice people and genuinely wanted to help, but it seemed that no one could. No one from the school ever got back to me, and the more I asked, the more I heard it was a total crapshoot because while they said their inclusion program was populated by "lottery,"  what little feedback I did get seemed to imply that this was code for "we cherry pick our special ed kids and don't have to admit it to anyone." Which was not any more reassuring than the other option.

I also tried to explore pendency. Pendency, in DOE-speak, is when you like the IEP you have and you sue the DOE to get them to keep it as-is for one more year. So in Teeny's case that would mean getting to hold her back and do another year of preschool. I was told right away that her school would not, could not do this. There was another school they could refer us to that did, but when I talked to them, they said that Teeny was far too skilled for their programming and that she'd be better off in a more academic environment.

I was essentially striking out before even getting started. 

So, we're moving. Not today, but soon. 

We are moving to a state where the public schools are excellent, more consistent, more inclusive. Where both of our girls can go to the same schools and have their very different needs met. Where because the cutoff for kindergarten is September 1 and not December 31 like in New York City, Teeny not only can but would have to do another year of integrated preschool. 

We are moving to where this new neurologist can help build a team that will follow Teeny for the rest of her life. Where I lived for six years, where my birth mother settled and spent 30 years raising a family. Where she and I met.

My grand- and great-grandparents came through Ellis Island and these days, even though as an adoptee I am not technically related to them, I have been identifying with them more as I think about this very big thing we are about to do so that Teeny has better opportunities in education. Truthfully, I know very little about what brought my great-grandparents to this country. I don't know what they left behind and whether they were fleeing something or someone. I remind myself that leaving everything you knew in the hopes of a better life for yourself and your children is something that happens all the time. All the time. But I have felt so stuck for months. I don't know how to write. I don't know how to connect with people. I don't know what to buy, what to save, what to throw away. I don't know how to say goodbye. I don't know how to sell an apartment or buy a house. I feel like I've just stepped off the trampoline we got for Teeny for Christmas, dizzy and shaky and about to fall over and wholly unsure of my next step and whether it would me on solid ground.

People move all the time, I tell myself. And we are going somewhere we know. Somewhere we love. I chose this. I want this. I know it's right. And still. It's so scary.

Despite my to do lists and timelines and spreadsheets, I am completely unable to visualize my life as it will be six months from now, in part because we have decided it's too soon to tell the kids (so please don't spill the beans)! For now, though, we are packing a box at a time. We are updating appliances in our apartment and painting walls and doors that need brightening. We told Bee's school. After all that work last year, that one really hurt. We are processing with family and friends who are sad to see us go, and imposing on family and friends in the new area who are helping us make decisions. And soon, we list the apartment. Then, we cross our fingers and wait. Wish us luck!

Motherlode article!

Hey, y'all! My latest blog post is in the Motherlode blog of The New York Times!

Sticks and Stones

Last week, someone called Teeny the r-word. 

I wasn't there for it, but hearing about it from Johnny felt like a kick in the stomach. He was taking the girls to the Y for their swim class when it happened. On our street. On our block. Where we walk a hundred times a day. There was a group of teenagers leaving the playground that my family was walking past. It went something like this: 

"Look at that girl in the stroller. She looks fucking retarded."

"Dude, she probably is retarded, just look at her father."

"That thing behind the stroller? Oh shit, that's a man?"

"Look at that fuckin' faggot. Do you see what he's wearing?"  

Blissfully, neither child noticed anything because Johnny stayed calm and didn't acknowledge them. He just walked them past the group and to the Y. Then he called me. And a million things went through my head at once.

First, I tried to make Johnny feel better. I tried to make it seem not so bad, like it was no big deal and he should let go of his feelings. At the same time, I thought it was sort of ironic that not four hours earlier, I had posted this video on Facebook:

This video validates the power of words and why words like the r-word are never okay. (Also, I just loved Paul!) I scrolled back down my page and watched it again and I cried thinking about all the people in the world who are marginalized for some real or perceived reason and have to suffer the indignity of being disrespected or mistreated. I cried thinking about my own child who will someday have to find a way to tell mean kids and adults to go fuck themselves, that she is as capable as anyone else. I cried thinking of the times she has already said "I can't" when I encourage her to do something by herself that might be really hard. 

Then I got angry. I thought about all the times Johnny or I have been called names and we'd never spoken up for ourselves because we feared for our safety. Johnny's been called a fag a million times. Lots of times when we walk down the street together, men catcall to us "ladies." Cashiers and customer service reps call him "ma'am." I have been called a dyke. A poser, a loser. Freak. Walking past the gutter punks on the Lower East Side back in the 80s and 90s, they'd always catcall at me. "Oh my GOTH!" they'd howl. We have been teased for our clothes, our music, our hair, our shoes, his accent, my last name, my being Jewish, our economic statuses, even our veganism. At the awful summer camp I was forced to go to for ten years because my mother worked there (and therefore I went free), I got made fun of for my area code (really!) and for living in an apartment instead of a house. I was tormented when I was little just because there always has to be someone and I was an easy target. The kids made me cry and because I always cried, they tormented me more. After a while I stopped saying anything to the kids who picked on me and cried alone instead. But the pain didn't go away and by the time I was 12, I had stopped crying. I'd learned to take it out on myself. Eventually, I really believed I deserved their hate and that I deserved to be punished. The ACT UP activists were right. Silence really does = death. 

I cried because I don't want my daughters to learn that kind of self-harming behavior. I cried for my younger self, for not feeling like I'd had a support system to help me get though my adolescence and early adulthood. I experienced rage and depression and twice I attempted to take my own life because I felt so alone. I also cried because I felt compassion for those teenagers, growing up without being taught to love and respect others. I felt sad that they probably go home to families who use words like that all the time. They probably thought they were being funny or cool or maybe they just didn't think at all. I felt sorry for them because I was an unhappy teenager too and I remember very clearly what that felt like. I had hated the world. I had hated my life. I know there were things I did and said when I was with my friends that hurt people I didn't even know, maybe for no other reason than I was trying to impress some kid so they wouldn't make fun of me instead. I cried because as I remembered my own adolescent behavior, I felt shame for judging these kids -- and without ever having seen them! I made assumptions about them based on what they said and where they were and I hated them for doing something that 25 years ago I was probably doing too. 

So I told everyone I knew about what happened. I shared on Facebook. I texted friends. I told coworkers. I wanted to expose this dark thing to the light, to diminish its power in whatever way I could. Turns out everyone I know has a story. Most people I know are or feel marginalized in some way, and many in multiple ways. The world has become a much more tolerant place than it was even very recently but we have a lot of work to do before I am convinced that we are really there. This may have been the first time Teeny was called this awful name but it won't be the last. As her mom, I want to give her all the tools she will need to teach the haters a thing or two. But the truth is that I don't have them. I am still a crybaby. Words still really hurt.

I know she is loved. I know she is growing up in a family that embraces difference and diversity. I know she will have good days and bad days and that every day she will come home to parents and a sister who will listen and be there for her consistently and lovingly. But in the face of cruelty, we will have to trust her to find her own way. I wish I could package this up as a teachable moment, but it's too painful. Instead, it just has to suck. I hate that I look over my shoulder every time I pass the playground on our street, wondering if the teenagers hanging out by the baby swings are the ones that accosted my family.

We've had some really wonderful days since then. Teeny had and loved her first hippotherapy session. We went to the ballet at Lincoln Center and saw Cinderella. We played in the park in beautiful sunny weather. The girls got cookies and smoothies at Peacefood. We bought them new sneakers for spring and when they got haircuts they left with pink balloons. And yet it lingers. Its ugliness, pervasive. If I had a nickel for every time I heard as a kid that sticks and stones can break my bones but names will never hurt me, I'd be a millionaire. I didn't believe it then and I sure as hell don't believe it now. It's in the back of my mind. Etched onto the insides of my eyelids. I can hear the word in my ears when there is quiet. It makes me look at my daughter differently. It makes me whisper the question to myself: Well, is she? 

A mom I know of a kid in Teeny's class shared a story with me. She said that she overheard a little boy on the playground ask his dad "What's wrong with that girl?" The dad said, "There's nothing wrong with her. What's wrong with you?" I loved that and it stuck with me. I know there's nothing wrong with Teeny. She's perfectly right just the way she is. What could be wrong about someone who makes me -- and so many other people -- so happy? But what's wrong with me that I'm still struggling a week after this three-second incident? What am I so afraid of? I accept her and love her and get so much out of knowing her just the way she is. Why can't I accept that other people might not? I say I don't care what other people think. So why does it hurt so much? What's wrong with me?

Nothing Changes on New Year's Day (I Will Begin Again)

What? 2014, where did you go? Suddenly here we are and it’s 2015. There is so much about the past year that I want to record that I haven’t. There is even so much about the past week that I want to record. 

More than once this past week of vacation, I’ve felt like I should just follow my children around and write down every cute or funny or inspirational thing they say in a notebook that I can reread when they are grown. I wanted to write down the time a couple days ago when Johnny was leaning in to turn up the volume on The Nightmare Before Christmas. Teeny, currently obsessed with Jack Skellington, was afraid he was turning it off. “No!” she cried. “Don’t turn it off!” I was amazed. I didn’t even know she could say that. In a flash I remembered how a year ago I had created a list of all the words she could say and put it in a Google doc. I gave her teachers and therapists access so we could all update it whenever we heard new words. At the time, her words were so few and her pronunciation so poor that most people had great difficulty understanding her. That list, on a spreadsheet that included a column in which I tried to recreate the way she pronounced particular words and phrases (like “AH-waht” for “I want”) served to help everyone understand what she meant when she tried to express herself and I wasn’t there to translate. 

Now she speaks in complete sentences almost routinely. They are slow and deliberate but they are pretty accurate and, to most, pretty clear. What’s funny is that I don’t always like what she has to say! “Did you finish peeing? Wipe yourself please,” I will say, a thousand times a day, handing her a wad of toilet paper. “No. YOU wipe me,” she will retort, pointing a finger in my face. These days she so is full of “No. YOU do it” that I have just started doing things for her that I know full well she can do herself. But this is dangerous territory for a three-year-old, neurotypical or otherwise, because as soon as I do that, she will of course shriek, “No! Teeny do! Teeny do!” and collapse into hysteria if I dare to do so much as flush the toilet for her when she’s finished because she decided a nanosecond too late that she wanted to do it herself. 

She’s becoming very stubborn. Half ultra-independent (“Teeny do it self!” and “No, I want own muffin!”), half-clinging to Mama (“I want to sit lap, Mama” and “No, YOU do it, Mama.”) Always pointing. Usually polite. And for me, never resistible.  As frustrating as it was to be outside with Bee when she, at eleven months, was taking her first steps, needing a half hour to cover one city block, it is a thousand times more frustrating to be outside with a three-year-old who wants like hell to walk but simply cannot. “I want WALK!” she will shout as we are loading her up into her wheelchair or her stroller or carseat. But then as we are putting on her shoes she will declare, “No braces!” When she doesn’t wear her braces, her ankles collapse easily and even standing becomes more challenging. So we try to reason with her about that, which gets us nowhere. Sometimes she wins and sometimes she doesn’t. When she wins, we walk. But it doesn’t stop there. “Just one hand,” she will instruct me as she pulls herself to a stand, leaning on me. To step without her walker, she needs to support herself with both arms, but this is too restrictive for her liking. I automatically take both her hands in mine to help her, but she invariably yanks one hand away from me, repeating “just one hand!” When I can, I let her try this even though we both know that she can’t take a single step without us holding both of her hands. I redirect that other hand to whatever’s closest – a chair back, a table edge, a windowsill, another person’s hand. This clearly makes her feel more independent. But it would probably take us a year to walk down one block. We take one very slow step after another, correcting the way her right foot crosses her left when she isn’t paying attention and the way both feet do it when she gets physically tired. But she presses on until she can’t go any further. “Take a break,” she will announce and sit down right in the middle of wherever she is, whatever she is doing. Two minutes later she’s usually ready to try again. This kid’s spirit is almost indefatigable. (Almost. She does have moments of extreme frustration when her body can't do what her mind tries to command it to.) For me it’s an exercise in patience and self-restraint that I do mostly happily because I know this new level of determination is a sign of incredible progress. Plus there’s something about it that’s awfully endearing, even when she’s at her bossiest.

Bee is now six weeks away from her fifth birthday. She is both sassy and sweet. This week she helped us with the border of our 1,000 piece puzzle, scouring the piles for corners and edges and seeing where they fit together. She happily sorted hundreds of pieces with me by color and pattern. “Oooh, Mama!” she announced, waving a tiny piece at me. “I think I found another piece of that lady’s green dress! Look!” Later, border complete, we were chomping at the bit to get started on the rest so we set the girls up with a movie. “Are you almost done with the puzzle?” she called to us, about a half hour later. “No,” I answered. “It’s a big one. We’ll be working on it all week!” I could hear the smile in her voice when she responded, “All week? Oooh! That means more screen time for us!” 

Cute, right? But I don’t need to follow them around with a pad and paper. Kids are cute at every stage and in thirty years I will look back and some of it I will remember and some of it I won’t and that’s okay. I don’t need to post every little thing they say and do to Facebook or other social media since my friends all have adorable children or cats or dogs or hobbies or homes too. They get it. I don’t need to do anything except enjoy it. And for me, sometimes that’s really, really hard.

That’s what I sat down to write about tonight. It’s January 1, a day of resolutions and new beginnings. In the past I would resolve to get skinny. To work out every day. To make that person fall in love with me. To stop saying stupid things. You know what I mean. At some point, though, I realized that those kinds of resolutions don’t work, that despite my determination, a half hour into my starvation diet I was ready to eat the house, that I hated the gym, that I had no control over other people and that maybe it’s not that I said stupid things but that I just didn’t have the confidence to believe in myself and to own what came out of my mouth. So I stopped making resolutions and started to think about ways I could be the person I want to be. I didn’t have to wait for January 1^st to do any of that. I could do that today, like right now.  

  

This year I want to do a little of both. At the tail end of a vacation in which I was essentially forced to unplug, I realize now how much I liked it. Work was, for all intents and purposes, closed for the time I was away and I had next to no responsibilities or reasons to even check in. Cell phone service was intermittent at best, so my phone was quiet except in fits and starts, and wifi in the house we rented was weak so powering up my laptop was pretty useless. I sent texts and social media updates in a flurry of strong reception, usually when we were in town for some reason, and then had little to no way of responding to the replies back at the house. Making calls in one spot not moving at all lest the conversation dwindle into “what?? You’re breaking up. What?!?” got tiresome and after a day or so I gave up on emails altogether. But you know, a girl could get used to that. I found myself spending the week with my family. I mean, with. I wasn’t multitasking. I wasn’t in a million different places while sitting on the couch with my kids. I wasn’t constantly thinking about what I had going on at work that wasn’t getting done or that I had to email so-and-so before falling asleep or what I was going to make for brunch when company comes next week or the bills that needed to get paid or that the cats didn’t get fed yet or that what Teeny just said would make a cute Facebook update. I was there. I was here:

One morning Bee woke me up early. Teeny and Johnny were both still asleep so we pulled on our coats and hats and boots and went for a walk in the woods. We talked about metta – the Buddhist concept of lovingkindness – and, stretching our arms out, we practiced throwing some love out into the universe. It was a pretty sweet moment for me, seeing who came to mind for her as we named many people and animals we loved and for whom we wished happiness, health and peace. When we came back to the house, I took out the box of items I have for when I meditate and I explained to her what they were. I showed her my little meditating Buddha statue, the lotus candle holder, the mala beads. She loved my Tibetan singing bowl and she sounded it several times before setting the timer. She settled in next to me and tried to just breathe. She was fidgety, so we tried putting our fingers on the mala beads. That worked for a little while. But after three minutes I could see her mind beginning to wander, so I let her sound the bowl again and we put everything away. Honestly, I wasn’t sure what she really learned, if anything. After all, she is only four. But she talked about that experience quite a bit and a day or two later she asked if we could light the flower candle again and sit with the Buddha and the beads. I was pretty surprised, and happy. And today on a walk in town, we stopped in one of those hippy-dippy tourist-trappy stores for rich white ladies trying to get in touch with themselves, full of overpriced jewelry and self-help books where everything is breakable, nothing is kid-friendly and where they play Enya and burn incense all day long. “Look!” she shrieked, and tore into the store, the door's chimes tinkling as she went in. A hundred disapproving eyes were instantly on us. Disregarding them, I looked. And following her gaze, I smiled. “What are those, Bee?” “They’re Buddhas, mama,” she answered proudly, pointing. They were!

Maybe she will retain nothing from those three minutes, but they were among the most important minutes for me of this whole week. I felt truly present. I was there. With my kid. It didn’t matter to me what she took from it. It didn’t matter whether she was really meditating or just trying to sit still because I asked her to or if she understood that by sending love out into the world the way we did, we really did make the world a better place. It was a moment we had together and it was fun for both of us. We were talking and we were listening to each other. It was only a few minutes, but they were uninterrupted minutes for a mama and her girl and they meant a lot to me. For a moment I was, as a friend of mine likes to say, where my feet were. That’s presence.

I was fully present in other ways this week. With the phones taking a backseat, I noticed that we talked more. Johnny and I completed our 1,000 piece puzzle working together over three awesome, engrossing evenings. We had friends join us for two days and we all sat around the table and talked and took turns playing with the kids. 

We walked in the woods behind the house, jumping on logs and inspecting the stream and the ice forming at its edges. “Look at that ice! It’s freezing over! I think Elsa has been here, don’t you, Mama?” Bee pontificated more than once. 

I let Johnny sleep in one morning and he let me, too. I had a little time to myself when I needed it and so did he. I brought a new cookbook with me and together he and I picked out new recipes to try. I dutifully made a shopping list two pages long with all the ingredients I would need to make those several very complex dishes. Our afternoon shopping trip outing -- one I was really looking forward to -- would involve a couple of different stops: at the supermarket, a gourmet grocer and the food co-op. We were thirty miles from the house when I realized I had forgotten it. I was devastated and the afternoon I was so excited about crumpled before me. But I realized I had a choice about how to behave. I decided to enlist my family's help to find everything I needed, and in the end we had great fun doing our food shopping together. And because I had been so involved in what I was doing, because I was so committed to creating these new dishes and because I had been so fully present when I made the list, somehow, I remembered every single item except one, and that one was easily substituted by something we already had. I couldn’t believe it.

Today I noticed that after five minutes walking in the woods with me, Bee’s conversation shifted from Elsa and toys and stuff in general to exercise, air, trees and love. This evening before dinner we walked the half mile to the end of our road and back, and we discussed the week we’d had and what we liked best. We talked about who and what was waiting for us at home, what we had coming up in the next few days. As we walked, she took my hand and said “I really like our house, Mama.” Which one? I asked her. This house? Or our apartment at home? “Both!” she said, smiling. “They’re cozy. Can we skip now?”  So we skipped the rest of the way down the hill holding hands to keep our fingers warm. 

This year I want more moments like that. So my resolution is to be more present. That’s vague and it’s meant to be. Maybe it means unplugging a little more, so that I unlearn the this-is-a-Facebook-moment-wait-where's-my-phone thought that I think at least a dozen times a day. Maybe it means doing one thing at a time and letting go of the notion that I am a good multitasker. Maybe it means putting myself first more. Maybe it's about worrying less and asking for help more. Spending more time listening. Meditating. Writing. Reading. Exercising regularly in ways I really like because I love my body and I love to be outside. Doing the things I love with the people I love and for the people I love. Maybe it's a little of everything. 

And yet as I type those words, my brain is already working against me. “You should have your resolution be clearer so you can hold yourself accountable,” it says. "That's what it takes to get things done." Maybe that's true for short term goals, but I want to change myself in this way for good. But my brain wants my New Year’s resolutions to sounds like this: You should read 50 books this year. You should work out six times a week. You should sleep at least eight hours a night. You should see friends once a month, balance your checkbook twice a week, eat only this number of calories every day. You should meditate once a day for at least 20 minutes a day. Do a blog post once a week. Read a book on active listening. Take up ceramics. Go back to school. Put the phone on airplane mode for two hours a day. My brain is yelling at me. “Those are all loving things! Accountability is key! Do them all and do them all right!” 

Maybe “be more present” means nothing more than that I stop telling myself all the things I should do and that I am a failure if I don’t do it perfectly. My brain wants to quantify everything as though it’s a measure of accomplishment – or more like a measure of my failure since there is no way I can hold myself accountable to that much. My brain challenges me: if you can do all of that, why can't you do more? But if you know you can't do it all, then why even try? Because clearly you’re awful at everything and you can’t get anything right. 

I don't want to hear that talk anymore. If I'm so busy crossing stuff off my list, am I really enjoying any of it? I do a lot of those things a lot of the time already. Isn’t that cause for celebration? And wouldn’t it be something if I could let myself off the hook for not being perfect and savor the truth of the many the things I do mostly right most of the time? 

I am so controlled by the clock, by the Outlook calendar, by timers, alarms, reminders and confirmation calls. I look at a clock to know when to eat, how long to run, where to be, how to get there, what to wear, whom to contact. Some of it is unavoidable, but the truth is that I can’t remember the last time I tried listening to my body, looking out the window at nature, or looking at the expressions on my children’s faces to make the decisions I have been allowing a beep or a ding to make for me. I am tired of being so overscheduled that I can’t use the present moment to help me determine whether tonight is a good night to read one extra chapter at bedtime because I am instead too busy thinking of all the things that might go wrong if they are up ten minutes later and all the things I still have to do and oh yeah we still have to water the plants and when will we be able to afford bunk beds for the girls and is that my phone ringing and goddamn it I forgot to put the wash in the dryer and I still have that thing to do for work so these kids have to get to sleep now so I can make some tea and fire up the laptop, and then I’m so lost in thought that I haven’t heard a word the girls have said and I completely missed bedtime anyway even though I was sitting right there.

I am not naive enough to say that this all stops today, New Year’s Day. But I can chip away at it. Over the past week I have felt a new love for my spouse and a genuine appreciation for the things we have in common – shared interests like music, certain kinds of food, doing puzzles, walking in the woods, stopping for coffee -- and a real respect for our differences too. We listened a little better to each other this week and we helped each other more. Our voices stayed a little lower and we laughed more than usual. And my patience with the girls lasted longer than usual too, and that was thanks to being present. So what if Teeny was always insisting on being in my lap or on my hip? Why should that be annoying? So what if she’s getting heavy and I can’t check my email while I'm holding her? It was an opportunity to smell her hair, sneak a kiss on her cheek, give her a squeeze. So what if Johnny was sitting reading his book instead of helping me in the kitchen? Preparing a meal is meditative for me, so how much help did I really need? And besides, isn’t he on vacation too? I loved seeing him engrossed in a book and when I really needed his help, I got to practice asking for it. So what if Bee wanted to play hide and seek, choosing the same hiding spot over and over and clearly not understanding the point of the game as I knew it. “I’m hiding in the closet, Mama!” she said every single time, giggling and hopping up and down like mad whenever she heard me come near. This gave me a chance to get creative. “I’m looking in the cabinet, and she’s not in there! Hmmmm… no Bee in the dresser drawers! Where could she be this time?” And this had a real snowball effect: I snuggled with Johnny and the girls a little bit more than usual, I offered to read to them a little more, I hung out in the bathroom longer than I usually do while Teeny splashed in the bath busily pouring water in and out of an empty bottle of shower gel and I spent a lot longer preparing new, interesting, loving and healthful meals for our family. These are things that I do already, but this week I did them a little bit more and with a lot more love, because I was really there for it all, soaking it up and feeling the effects resonate in my body, my mind and my heart.  

So here’s to another imperfect year. But maybe a just little bit less imperfect, with me being a little more present.