Wednesday, October 18, 2017

Message In A Bottle

If you were here right now, you would be here. With me. I might have texted you earlier to tell you what a total crap day today was, what a shit week it’s been and what a completely challenging month I’ve had, and you would have dropped everything to come to me. You would have acted like there was nothing in the world more important than being with me, like there was nothing in the world at all other than me. Never mind that it's your birthday, that you probably have a million other people to see and things to do. For this moment, you let me feel that it's all about me. That is just what you do.

You'd materialize, full of energy, and tell me to grab a scarf and a jacket because we were going out. You'd take me for a fancy massage or to buy a pair of shoes. We'd sit at one of our favorite restaurants and order way too much and I'd talk and you'd listen and you'd wince at my stories and mutter "oooh, that stupid fucker" or "you tell 'em" or some such under your breath as I poured my heart out to you, making me feel like you were my number one fan, my cheerleader. To you, I was always right. Those stupid fuckers just didn't get it, they just didn't understand us.

You'd hold my hand, insist I take the leftover food home for lunch tomorrow, maybe slip me a check when I wasn't looking, with a scribbled note not to spend it on bills but to buy myself something completely frivolous. You'd pass along a book you just finished reading because you knew I'd like it too, you'd put me in a cab and make sure I got home safe. You would text me the next day, asking about that stupid fucker so-and-so. A week later something might appear in my mailbox: a note, another book, some tiny thing that only you would know I wanted or needed. You had a way of making me feel so loved and so important. You didn't hold back. 

Since you've been gone, I've grown a lot. I have had to face so many new and scary things. I do things I never thought I would be able to do, fight for things I never thought I would have to fight for. I look at my babies -- not babies anymore -- and think of you, at that restaurant on Cortelyou, that day when everything changed. Neither of us eating, you holding my brand new firstborn, touching her nose, her cheeks. I think about the text I sent you ten months later -- no words, just the picture of the stick and the little plus sign. You were the first to know. I think of how tragic it is that my girls don't know you. They're growing into beautiful, strong, brave humans. I know you would be so proud of them. In my mind's eye I see you reading to them, advocating for them, snuggling them. You'd be there some afternoons to greet them as they come off the schoolbus. You'd read to them often, give us date nights monthly, go apple picking with us every year. You’d know better than the rest of us how to put Freyja’s braces on, how to get her to swallow a pill, how to get both of them to try new foods. You’d brush Thora’s hair and let Freyja try on all your jewelry, sit patiently through puzzles and Legos and hours of coloring. I think you'd approve of the kind of mom I am becoming, and this thought is more validating than any other compliment or vote of confidence I've ever gotten. And then I remember the last thing you ever said to me, six and a half years ago, wishing me a happy mother's day. You told me you loved me and I believed I was going to hear you say that again and again for the rest of my life.

So much about my life is different now. I think you'd think I work hard at my job, my marriage, my life. I remember you told me once early on that the one thing you wanted to know all those long years was that I was happy. I wasn't then. But I am now, and I think this would bring you great joy. You loved Johnny too -- just because I loved him. You believed in him when many others didn't want to give him a chance. I wish you could see what a wonderful father and partner he has become, just like you knew he would. I think that would make you beam with pride. 

In recent years I've made many big decisions. I'm not sure you would like them all. Do you know I cut my hair off -- never once thinking I might look like a poodle just like you did the last time you cut yours? I have a picture of you with that 'do. You loathed it! I wonder why on earth I thought it would be a good idea to do the same thing. I imagine you laughing with me, maybe even a little at me, lending me one of your Red Sox baseball caps or offering me box of bobby pins to get me through that never-ending awkward stage. Do you know we now live 3 miles from your house? I can't imagine living anywhere else now, and yet I wonder that if you were here whether you'd think the town was big enough for the two of us. And do you know that I met him? You were so reluctant, and while I had you, I never felt the need. But then you were gone and he appeared, almost out of nowhere. And it was wonderful and difficult and somehow totally natural, and then before I knew what was happening, I lost him too. Do you know that he never stopped loving you and me? The three of us had so much unfinished business. Some days it's hard to muster up the ooomph to keep at it without you both, but everything I do, I do for all of us. Do you know how much I miss you? That my unique memory of you lives on in so much that we do and feel and are?

I try not to think about how unfair it all is, how robbed I feel. Instead I think about how lucky I am to know you loved me, that you wanted me. Both of you did. This is a warm and soft blanket I carry around with me everywhere. It energizes me, emboldens me. It's a private little hug I give myself when I need it most. You loved me. You wanted me. My existence has value. 

Friday, September 22, 2017

On Six Years of Freyja-hood

Freyja turns six tomorrow. 

Today was a rainy day of mini-vacation on Cape Cod. There were Mad Libs, there were board games, there was reading, there was the telling of stories. As she got in the bath tonight, I told her the story of her birth and she rolled her eyes and groaned and said "But I already know, Mama!"

Considering the complexity of this child, it's a pretty simple story. I will leave out the drama for the squeamish readers and summarize here: Early one morning, spouse says: I'm cancelling my plans for tonight. I feel like I should stay home just in case. Remembering the way my first birth went, I say, no, go ahead and keep your plans! This baby has another two weeks to go. Have a nice day! And off I go to work and about five hours later I go into labor at my desk. Since the last baby took five days of labor to make up her mind about coming out, I think nothing of the contractions and reassure people that everything's fine and there's no cause for alarm. Then I lose my mucus plug while interviewing a candidate for a position on my team (whom I immediately hire), think I am bleeding to death, go get an emergency ultrasound, am told that I am definitely in labor and that I should under no circumstances go back to the office or go anywhere but straight home. In the cab, I alternate between not wanting to scare the cabbie into thinking I will give birth in the backseat of his car and expressing extreme gratitude that my spouse's spidey sense was dead on. He was home to receive me. Figuring we have a long night ahead of us, I sit on the birthing ball, bouncing and screaming and watching a season and a half of Breaking Bad, try to take a nap as Ina May Gaskin advises, and then lie in the bathtub for so long that I don't realize I am transitioning until I am puking all over myself. Spouse calls midwife when my screams become continuous but for the retching. Midwife shows up in a flash and says "holy shit you're having this baby right here in the bathtub, right now" and seventeen minutes later it's 5:03 am and I have a baby on me and a plate full of Oreos that I cram into my mouth two at a time because my blood sugar is low and giving birth makes me hungry in the kind of way that only a gigantic bag of double-stuf Oreos and a newborn baby can satisfy.  Midwife and doula clean up and clear out, other child wakes up, spouse passes out from exhaustion and I don't sleep well for the next five and a half years. The end. 

So six years ago I was having the homebirth I always wanted, giving birth to a second daughter, completing my family and perfecting my life. 

Five years ago I knew there was something terribly wrong with my baby and was trying desperately to convince everyone else that she needed evaluation and help.

Four years ago I was drowning in diagnoses and medical information, trying to navigate the Early Intervention system in New York City, knowing that if she lived, we would leave. If we stayed, she wouldn't stand a chance. 

Three years ago she was placed in the wrong classroom. I knew it on the first day of school and it took the DOE an entire year to move her. So much precious time wasted.

Two years ago we made the decision to leave our hometown, the Big Apple, where were were both born and raised and where we'd always been sure we would also die. We knew it was the right thing to do to give both of our children what we felt they needed and deserved.

One year ago I felt hope as she started her last year of preschool in a truly integrated, inclusive setting.

And here we are today, getting ready to celebrate her birthday. It's a celebration of life. Her life. Of beating the odds, a day at a time. For the older she gets, the more victorious we feel. Her diagnosis is cruel and unforgiving, but she doesn't know it. It doesn't stop her and she doesn't let anything stop us. We are sleeping a little better now because we mostly believe she will be alive when we go upstairs to rouse her every morning. She is thriving and blossoming and she is just so busy being.

She has big plans for her birthday. She has a fancy dress to wear and wants cake and donuts and presents and family and friends. She tells everyone she sees that she is turning six on September 24th and that she is really excited. But her party is a week later, so she plans to celebrate all week long. And then it will be Halloween soon and she's going to be Princess Anna, who is from Frozen, in case you didn't know. She rattles this all off to the checkout person at the grocery store, the barista at the coffee shop, the bus driver, the lady who cleans the bathrooms in the town center. And they look down at her and I watch them take her in, their eyes running over the walker, the leg braces, and the sparkly eyes and big smile. I see her as they see her and I watch as they fall in love with her and I am proud that she is mine, this little being who spreads joy wherever she goes, warming the hearts of everyone she encounters.   

In a way, Freyja is Milo, the main character in my favorite book of all time, The Phantom Tollbooth. Milo is sent on a journey, the truth of which the King of Dictionopolis and the Mathemagician both know but refuse to tell him until he has returned successful. Instead they wish him well, set him up with an entourage consisting of bugs and dogs to keep him safe, give him tools to fight the demons he will surely encounter, and send him on his way. 

Remember that thing we told you we couldn't tell you until you were back? the kings say to Milo at the festival they hold in his honor upon his return, having rescued the princesses of Sweet Rhyme and Pure Reason and restored them to ruling the kingdom of Wisdom. Yes, he says eagerly. What was it? "It was impossible," one of them says, very seriously. "Completely impossible," says the other.

If Freyja is Milo, then I am the King of Dictionopolis, powerless to fix the plight of my own child but with a head full of all the letters and words in the whole world, and Johnny is the Mathemagician, with a magic staff that rewrites all the formulas and creates solutions to unusual problems. We created this child. We unwittingly set her up for this journey, and now, just shy of six years in, we can look at her and marvel. What we knew would be completely impossible, she has done. 

But I'm never going to tell her that. 

At Back to School night a couple weeks ago, several parents came up to me, introduced themselves, and told me they hear about Freyja every single day from their kids. I smiled and made small talk and chatted about play dates that probably won't ever happen, and I wondered how they knew I was her mother. How did they know? I had no name tag on. I hadn't even opened my mouth. Do I just exude L'Air Du Special Needs Mama somehow? 

I pondered this as I sat down in her tiny chair. We listened to her teacher as she talked about school rules, field trips they needed volunteer chaperones for, allergies in the classroom, ziploc bags full of extra underwear and socks I needed to send in. In seventeen little folders on the tables were seventeen green sheets of paper, upon which we were asked to write down some emergency contact information. Under this was a blank space, at the beginning of which read: "Tell us a little bit about what your hopes and dreams are for your child to achieve this year!" I chewed my pen cap, thinking. I peered over at the mom next to me to peek at what she was writing, but I couldn't see. I wondered what other parents said. I want Junior to be able to read chapter books this year. We hope that Molly continues to benefit from the socialization that preschool provided last year. Who knows? I closed my eyes for a moment and then I wrote: "Freyja is a hardworking, determined child who benefits from an inclusive environment with neurotypical peers as models. Of course we are concerned about her academics but even more important to us is this: We know that schoool, like life, is full of joys and frustrations. We want Freyja to be able to face both as she grows. She will never stop working toward her goals. If she knows you are working with her, she will never ever let you down, so please don't ever give up on her." And I folded the green sheet of paper and dropped it into the pile on the teacher's desk and walked out into the night, back toward home, to my sleeping girls, to the life that I never knew was possible until Freyja came along. 

Friday, September 8, 2017

(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,

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.

Friday, August 18, 2017

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.