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.
There's nothing ever written that I look forward to more than your blog posts. Beautiful, just like you, J, Bee and Freyja. Humbled. That's the only thing I feel when reading your touching words. Thank you for sharing. I will always be here to read ❤️ReplyDelete
This was just wonderful. Thank you, from another struggling parent.ReplyDelete