Joy and Pain

August 2, 2020

I could have easily titled this post “Pain and More Pain.” There’s so much of it these days. Physical, emotional, mental. It’s both individual and collective. It’s in the news and in my nightmares. One of my first yoga teachers told our class that “desire = suffering.” I heard that and thought about my desire for stuff, for approval, for thicker hair. I understood that desire meant longing for something you didn’t have. But what about wanting to get rid of things you already had and most definitely did not want? Like physical or emotional pain? As far as I was concerned, pain = suffering. You couldn’t have one without the other.

That was then. And it was a “not-so-distant” then, if I’m being honest. Trying to push my pain away only made that pain more potent when it either exploded on the scene a short time later or corroded my daily existence as I tried to pretend it didn’t exist. Oh how I suffered. It makes me a little nauseous thinking back to how hard I worked to swim upstream, against the current and approaching the rapids- not with goggles on, but with blinders.

My Wayfinder life coach mentor Martha Beck makes a distinction between “clean pain” and “dirty pain.” Clean pain is pain caused by circumstances or events. It is exquisite, and it can take your breath away. Dirty pain is pain brought on by our thinking, by our thoughts that surround, distort, or disguise our clean pain. That’s where true suffering lies- where the desire to escape or prevent our feelings of pain rises up. Have you ever tried to numb your feelings? Or deny their very existence? What is the point of putting on a brave face when that’s just a lie you are selling yourself and those around you? The real bravery comes from feeling your pain, your sadness– owning it, and admitting it. Grace happens when you accept your humanity and allow your body and mind to experience these feelings. Your blinders are replaced by goggles, and though the rapids do a number on you physically and mentally, you WILL come out on the other side. It will pass. A shady spot on the shoreline is waiting for you- along with a deep sense of knowing that you are not alone. You are human. And it’s okay.

Why is it that pain is easier to imagine and talk about than joy? It feels somewhat like a betrayal to even write about joy when so much of our world is sick and on fire. Joy can be hard to come by (and hard to last) if we try to look for it outside ourselves, even though there are countless little moments provided by the kindness of others and by the wonders of our natural environment. Stuck in our pandemic bubbles, I’d like to encourage you to look for joy within– through the use of your imagination. I don’t know if it was the fact that I was an only child, or if it was my love of science fiction and fantasy books- or a combination of the two– but I practically lived in my imagination as a child. Even when I played with friends we created imaginary scenarios and delighted in just how “real” they felt for us. As an adult, my imagination shrank way down, and it wasn’t very, well, imaginative. I wasted a lot of it on pretending and wishing things were different– the energy behind those fantasies was negative and came from a place of fear. Talk about suffering. . . .

There’s quite a bit of science behind the benefits of using your imagination (see “Richard Boyatzis,” “positive emotional attractors,” “intentional change theory,” “positive psychology,” and “Martin Seligman” for starters). I don’t want us to get bogged down in the details, or overly concerned with following any format. Instead, I want you to do what Martha Beck encourages her coaching students to do and “imagine your success– not to the point of delusion, but to the point of joy.” Can you find the joy in imagining all your dreams came true? What does that feel like in your body? How do you treat yourself, and others, when you come from this place of utter satisfaction? What do you notice? This is nothing like a formal meditation– this is more like lying on your bed and daydreaming. Try it for five minutes, or ten if you’re feeling up for it. This is joy that you can access at any time, regardless of your surroundings. Joy that is imagined in the future but has a noticeable effect on our bodies and our minds in the present moment. It creates a spaciousness, a place of possibility, a respite from tight muscles and shallow breathing. The more we touch that joy that is unique to ourselves, the easier it becomes to recall. You might even start seeking that feeling out as you go about your daily living, edging your reality just a little bit closer to your heart’s desire.

Joy and Pain. Hope and Humanity. The child in me honors the child in you- let’s imagine ourselves (and our world) into a boundless place of possibilities, five minutes at a time.

Hope-y New Year 2020

January 10, 2020

Ten months ago I wrote my first “Hope-y” blog post, in which I explained that “Hope-y” sounds much more realistic and attainable to me than just pure “Hope.” Or how about “Hope-adjacent?” At this point in January, many of those New Year’s resolutions we all were so determined to make (and keep) have possibly taken a downward turn toward entropy as our future vision meets our daily reality. As a recovering perfectionist with a long history of fearing failure, I want to start off this clean slate of a year with a more realistic goal: Hope-y-ness. Hopeful and happy, but with the worn-in, “vintage” look that’s so popular nowadays. And it won’t show the stains and strains of the occasional mess. Easier to maintain, and much more comfortable.

It’s also important for me to acknowledge Hope (or Hope-y-ness) as a partner in balance to Fear, my constant and familiar companion. I spent a lot of lines last year writing about Fear and how it shows up in all sorts of ways, how I’m getting better at spotting it when it comes at me wearing a different disguise (humor instead of tears, impatience instead of paralysis). Choosing to act in spite of the fear is a daily, sometimes minute-by-minute intentional choice, and that can be so exhausting- even as it’s getting easier to do.

American author Audre Lorde, writing on her 50th birthday (and two weeks after a diagnosis of liver cancer), penned this about fear: “I want to write down everything I know about being afraid, but I’d probably never have enough time to write anything else. Afraid is a country where they issue us passports at birth and hope we never seek citizenship in any other country. The face of afraid keeps changing constantly, and I can count on that change. I need to travel light and fast, and there’s a lot of baggage I’m going to have to leave behind me. Jettison cargo.”

Instead of adding more goals and actions to the start of this new decade, what if we focused on subtracting excess baggage? Jettisoning some cargo? Letting go of old stories and past regrets so that we can be fully present in the Present? That’s the only way we can create space for a Hope-y future. There is such freedom in choosing Hope (Hope-y-ness) over Fear, and it is one of the hardest things I’ve ever done, over and over and over again.

Now, I am faced with the prospect of genuine good news– our son is coming home– and I am desperately wanting to hang on to Hope. I don’t want the marks I carry from past fears realized to dampen these potential-filled days ahead. My parenting PTSD wants to drag me back down to the days where I was faking it but definitely not making it. Back to before I learned to stay balanced by rooting myself only in the present moment (with the deep understanding that nothing is permanent). No lingering in the past or dipping into the unwritten future. It’s watered my Hope down to Hope-y-ness, but that’s okay. Like Audre Lorde, I need to travel light and fast. And if Hope is “the thing with feathers,” according to that well-known Emily Dickinson poem, then Hope-y-ness is a feather itself, nothing at all that will weigh you down (especially with unmet expectations).

The not-so-divine in me acknowledges the not-so-divine in you, and loves you because of this shared humanity. So “Hope-y New Year” my friends. Here’s a feather for your travels–

Instead of a stroll down memory lane, how about a fast walk in the opposite direction?

December 23, 2019

Ahh, the holidays. . . so full of sugarplums and partridges in pear trees. . . and stress. And not just 12 days of stress, but a whole calendar’s worth of it, as the year winds down and we gear up for a new one. Like Santa’s big red bag stuffed with presents, we carry around our own big bag– ours is stuffed with memories of past holidays and past New Year’s resolutions, of the year (and now the decade) that’s past, layered with holiday-amplified grief for loved ones lost. I’m already hunched over wrapping all those presents; under the added weight of my “bag” I’m almost crushed flat.

Yes, of course there are many happy memories in there too. And if your bag is stuffed with only those, then have another glass of eggnog and thank your lucky stars. But many of us are dealing with experiences that fall somewhere in between on the spectrum of Happy and “big-T” Trauma. “Little-t” traumas and other types of heartbreak also leave their mark on us physically, mentally, emotionally, and socially. I, for example, feel guilty at times that I feel so gobsmacked by my own traumas when others have much bigger challenges. But why do I feel that I don’t deserve to be as sad as others can or should be? What kind of messed up thinking is that? Let me tell you, from my vast experience on the subject, that not allowing yourself to feel all your feels will only cause more sorrow and less joy. Dashing through the holiday “snow” of parties, days off (or not), family gatherings (or family exclusions), we can focus so much on what we should be feeling that we leave no room for what we actually are feeling. We can get so hung up on the past that we waste the present trying to either recreate it or get as far away from it as possible. What if we gave ourselves permission to be just as we are, to feel what we feel, even if it’s sadness during a time of joy? That joy will itself be hard to come by if we don’t acknowledge the grief, or the fatigue, or the anxiety, or the anger. Once we own it, it will pass, and in its place will come possibility. That potential that feels like kissing a baby’s sweet little head, or like a raucous laugh that bursts out of nowhere and comes with tears and side stitches. The possibility of creating new memories in old, familiar places. Hope.

My wish for you, and for myself, is to simply feel what you are feeling during this intense time. Notice your feelings, and please don’t hide them– you are entitled to your feelings, even if they can’t be wrapped up with shiny paper and tied neatly with a festive bow. Light the candles, but acknowledge the existence of the darkness too. If hope seems like too lofty a goal, then just breathe. And breathe again. Ask for help if you need it. And be gentle with yourself.

‘Tis the season for miracles.

Okay then, “Resigned Acceptance” it is (heavy sigh)

September 8, 2019

In my last post I settled on the idea of “resigned acceptance” instead of the “radical acceptance” urged by yogis, authors, therapists, and other enlightened souls. I am resigned to the facts that bad things happen and I can’t control everything. This reluctant balance has given me some surprising benefits: my recovery time when “bad things happen” has shortened dramatically, both physically and emotionally. I don’t need to put on my happy face as much anymore- I can function in public spaces (and some private ones) even while sad or in pain, and not frighten any passers-by. I’m not faking it, or avoiding it– believe me, I’ve tried both for decades now, but my cosmic fatigue finally forced me into this new place, and it actually feels strangely good. One of the hard tasks now is to accept feeling good, feeling capable, feeling worthy of this small piece of peace.

And then our sweet, sweet pup Finny died.

He was only 8 years old. We knew for a year or so that he had some kidney issues, but we had been managing to keep him healthy through special food and medications. Then, suddenly, over the course of three weeks, he deteriorated. At the start of his last day with us, we weren’t even sure that would be his last day. Just a couple of hours later, however, we were calling the vet and asking to come in as soon as possible. Our last best gift for the sweetest dog ever was to help end his suffering, and that knowledge gave me the strength to plow through those last few hours of that utterly surreal and sorrowful day.

There is so much written about grief that it feels wrong to even try to add my thoughts to what’s already out there. But it is exactly thoughts that I want to talk about: how grief can distort your thinking so that suddenly you are stopped cold in your tracks at what your mind just conjured. . . . I keep hearing and seeing Finny everywhere in the house, and I keep thinking that I’ve got to get home from whatever I’m doing to let him out. And when I do finally get home, I’m greeted not by the shiny black nose poking out the door (the nose we always thought looked like the plastic ones glued onto teddy bears) but by the gut-punch of emptiness. These are my everyday, garden-variety grieving thoughts. The one that almost caused a car accident occurred as I was driving home from the vet’s with Finny’s ashes. . . . We had selected a small, plain, wooden box for his remains, one that had a place to display a photo on the front. I had gotten a new iPhone in the days since Finny died, one with a much-improved camera, and I thought that I would head home and take a “portrait mode” photo of our pup– TO PUT ON THE FRONT OF HIS URN. WTF?? I was driving home with his ashes in the passenger seat, planning to walk in and take a quality portrait of him to slide into the frame on the display box holding his remains?!? Whoa.

Yes, I was under the extreme stress of grief. And yes, I realized my thought was “Not Normal” the second after I thought it. But if this is what our brains can produce under duress, how many other distortions do we think into reality and then act on? Our brains, our thoughts, are NOT reliable sources, not even in the best of times. Thinking things doesn’t make those things “real.” Question everything. Be present. Be curious. Remember– “Eternal vigilance is the price of liberty.” That liberty, that freedom– even just a reluctant taste of it compels me to urge you to stay vigilant. You don’t have to be radical— just resigned. If I can do it, so can you.

Radical Acceptance- F$%@ that S*&#!

July 30, 2019

So, I’m a little mad. Make that angry. Frustrated. Almost, dare I say, another f-word? Furious. Okay-that feels better.

And I’m not even going to touch on my fury about our current political and ecological climates (too overwhelming for just one blog post).

I do internal anger very well (or rather, I have a lot of it). I’ve just never been able to let it out in an effective or freeing sort of way. My external self shows anger with a quavery voice and tears, and some spectacular red splotches across my pale cheeks. I have a feeling that putting my anger out in public through this post isn’t going to end well either, or be perfect, so this is quite a boundary-pushing, out-of-my-comfort-zone kind of exercise. I’d much prefer to be smiling and self-deprecating, and make everyone happy. Care to join me and “lean in” to some messy emotions and unpleasant truths instead?

I’m effing furious at how unfair life is. How hard things are. How no matter what I do or say or think or eat I can’t control what happens to my children, my family, the people I love. It’s completely unacceptable that Ollie has to navigate life with a triple-threat-burden of mental health issues, a genetic condition with no cure, and a body that didn’t match his gender identity.

I thought I gave up worshipping the false idol of control when we finally acknowledged that Ollie needed more help than we could give him at home. Sending your kid away is a radical, unnatural act. But that was only the beginning. It’s been two years of learning and unlearning, grieving and gaining– only to have to wake up the next day and start all over again. The bits of hard-earned wisdom I’ve gained still feel hard, even after the price I paid to acquire them. Shouldn’t it be easier to wake up every day and stay in balance and be hopeful? I mean, yes, it’s easier now than it was at the beginning but it’s nowhere near easy. And I’m tired. It is hard work, making a deliberate choice to re-set and re-center. It is relentless– this choice presents itself every second of every day. And it’s still not as automatic as I thought it would be by now. All this while my middle-aged body gives gravity a free reign and my hormones rage like the plaid-wearing grunge rockers I loved back in the ’90s. No, this is absolutely NOT Nirvana. . . .

There’s a quote that keeps floating up in my mind: “Eternal vigilance is the price of liberty.” According to thisdayinquotes.com, this quote is often mistakenly attributed to both Irish lawyer John Philpott Curran and US President Thomas Jefferson. The most famous use of this sentence was from a speech made by Wendell Phillips, an American Abolitionist and liberal activist, in January 1852. However, it was novelist Aldous Huxley who said in 1956, “The price of liberty, and even of common humanity, is eternal vigilance.”

Why is it so hard to remember our common humanity? Why can’t it be the “factory preset” so that we don’t have to work so ridiculously, insanely hard? Oh, okay, whoops, I’ve diverged into (political) climate talk, so I’ll redirect. . . .

“Radical acceptance” is a concept in Dialectical Behavior Theory and in some Buddhist teachings (and it’s the title of a book by American psychologist Tara Brach). I’ve bumped up against it both in my own therapeutic work and in our work as a family. To me, it means that if I can accept things as they are, truly and with every fiber of my being, then I will be free– then I can step on to the path to enlightenment. To contentment. Sounds wonderful, doesn’t it? Oh, to be content. After two years of rolling my own boulder uphill every single day, I say, “F$%@ that S*&#!” I don’t think I’m anywhere close to radical acceptance– my current status is more like “resigned acceptance.” Life is hard, and it sucks. And I don’t think that’s okay, or at least I haven’t yet found a way to be okay with that. . . but I have learned that I have the strength to choose freedom, freedom from my old, distorted ways of thinking. (Some days, anyway. Other days, I stay in bed.) It’s so deliciously tempting to fall into the comforts of ruminating about the past or freaking out about the future. It’s still so miserably hard to stay eternally vigilant and planted firmly in the present, open and terrifyingly exposed to the unknown. It’s fucking exhausting to be a battle-ready, peace-loving, lotus blossom warrior fighting to face the sunlight and stay upright in the mud and muck of human experience. It sucks. It’s too high a price to pay. And? What other choice do we have?

I want to use this space to acknowledge all the messy, unpleasant emotions that we all share– if we don’t own them then they will own us. I’m tired of being polite and contained and performing to what I think are other people’s expectations of me– none of this has actually helped my kids, or my family, or the people I love, avoid the pain of their own humanity. Nor, in fact, has it ultimately helped me.

Resigned acceptance sounds like a reasonable place to start. Today at least. If you’d like some company I’ll be right here, rolling my own rock up my own hill. There’s plenty of room. As long as you don’t mind a few curse words in between meditations and water breaks.

Parenting Against Instinct

July 7, 2019

I found myself in a bookstore the other day, and decided to browse through the parenting section, looking to see if there was a title I overlooked all those years ago that would have spoken to where I find myself today. The short answer: No. There were many books still on the shelves that had provided me comfort, information, and support back in the early days of pregnancy and babyhood. Almost all of these books had something in common, a shared style that I’ll call “parenting by addition.” You worry about sleeping, eating, time outs, play dates– these books will show you the techniques to use to achieve your goals. You pick up one of these books when you want your baby to acquire a new skill or reach some developmental milestone, or when you want to find ways to incorporate your beliefs and values into your parenting. You add a new skill, food, stimulating toy, or piece of music to your parent resumé. The authors of these manuals may very well take into account your individual child’s temperament, but they almost never take into account your temperament. Your own “building blocks”- how you came to be who you are, the parent you are, today.

I don’t think it’s a stretch to say that most of us– with or without children– have or had an image in our minds of the kind of parent you want(ed) to be. This image roots itself in the way we ourselves were raised, either growing in contrast to or in honor of the job our parents did. We’ve got to start somewhere, right? And for many kids, this way of “building a parent” works just fine. There are a couple of flaws in this fabric, however. First, the way we think about how we were raised gets a bit stuck in our formative years. When we reflect back on our memories, we often switch gears right into our younger brains– the patterns and thoughts we used way back when, and following close behind are the feelings and emotions from way back when too. As I asked in my last post, do you really want your old, child-formed thought patterns making decisions for you in the present? Unconsciously, you could end up parenting The Ghost of Your Childhood Self, trying to comfort your inner child by either filling in some holes, righting some wrongs that left marks on your psyche, or by slipping out of the harsh realities of adulthood and right into the soothing rituals and words of your imagined idyllic childhood.

And what if this present-day version of the “parent you want to be” just isn’t working for the child you actually have? What if you consulted all the books and experts, “added in” all their tips and tricks, and are still failing to connect with your child? This image you’ve constructed about the parent you are only really serves you— it has nothing to do with your children, the ones who are being parented by you. What if your child needs you to be something you aren’t? This is what I call “parenting against instinct.” For those of you who have been with me on this journey you know that “Parenting Against Instinct” is the title of the book I keep swearing I will write someday. And because every book title needs a colon, Part Two of my title will be, “Becoming the Parent Your Child Needs, Not the One You Thought You’d Be” (or something like that).

In order to become the parent Ollie needed, I had to strip away all of my well-designed plans– plans that had been tested (somewhat) successfully the first time around. This is what I call “parenting by subtraction.” This is what I went searching for in the bookstore the other day. The books that would guide my on my inner journey, help me find all those explicit and implicit memories that laid the tracks inside my brain– only instead of being along for the ride, this time I would “mind the gaps” and force myself to be aware of the scenery flying by outside. What I found was fear– fear of “Not Normal!” and “Something Is Wrong- And It’s All My Fault!” and “You Must Control Everything By Being Perfect.” Ahh, the unexamined fruit of my anxious, perfectionistic child labor, all grown up. The fear underneath it all was buzzing so loudly in my ears that I couldn’t/wouldn’t hear what it was that Ollie really needed from me.

With the extensive, nurturing support of my heroic therapist, I’ve begun to lay some new tracks in my brain. Or, more accurately, I’ve reckoned with the old tracks and am learning to step off into the uncharted unknown. You can’t be present for your kids when you are gripping so tightly onto the past and afraid of the future. What signs are you missing from your children when you are working so hard to parent your younger self? What are your kids learning from you that you are not explicitly teaching them? I’ll share an example– by showing Ollie every single way to name and manage his anxious feelings (something that was missing from my own childhood– who did that sort of thing in the ’70s and ’80s??), I thought I was showing him acceptance, building up his “toolbox” of coping strategies. That was the explicit/outside message. What I was really doing (the implicit message) was showing Ollie that he couldn’t manage his feelings on his own– my fear prevented me from doing what Ollie needed most, which was for me to just sit beside him and bear witness. To validate his emotions and give him the space he needed to work things out on his own. I know I’m simplifying a bit, but please wade through my less-than-perfect explanation (such progress!) and take a moment to think about the difference between what we show our kids and what our kids actually “see.” Take a deep breath. Be Curious. Be Present.

By the way, THERE ARE BOOKS! They don’t seem to pop up when searching for general parenting books– but they should. If I could focus on the past just once more, I wish I had come across these titles BEFORE I became a parent. While each of these titles has the word “parent” in it, the ideas and science behind them would benefit ALL of us– parents or not. This is one of the recurring themes of my blog posts- what wisdom I’ve gained the hard way as a parent is invaluable for all of us, as human beings. It’s scary and hard and breathtaking and impossible and the only way forward.

Here are the titles, in alphabetical order:

“Not By Chance: How Parents Boost Their Teen’s Success In and After Treatment” by Tim R. Thayne, Ph.D.

“Parenting from the Inside Out: How a Deeper Self-Understanding Can Help You Raise Children Who Thrive” by Daniel J. Siegel, M.D., and Mary Hartzell, M.Ed.

“The Book You Wish Your Parents Had Read (and Your Children Will be Glad That You Did” by Philippa Perry

“The Journey of the Heroic Parent: Your Child’s Struggle and the Road Home” by Brad R. Reedy, Ph.D.

I am indebted to these authors. And to my children.

The Work

June 5, 2019

I’ve made a few references to “the work” we have had to do since starting this journey with Ollie– work that is harder than anything else I’ve ever done. When the current started shifting and we felt the backwards pull, I thought our work was to help Ollie by advocating for him. I committed myself to finding doctors and therapists and specialists who could fill Ollie’s “toolbox” with skills, stretches, and strategies for coping with all of his challenges. I downloaded mindfulness apps and tried to engage Ollie in breathing exercises with me. I began narrating my days–in the same way I did when he was a baby and learning to understand words– showing him all the times I was frustrated or angry or happy, and how I managed all those emotions (or didn’t), in every different situation.

It’s ironic, considering how sure I was of my complicity in his challenges, of my failure as a parent, that I never fully realized what I was signing on for when we sent Ollie away. He wasn’t the only one who was facing back-breaking work. . . . We may not have had to endure the physical labor of wilderness therapy: preparing the earth, planting seedlings, harvesting produce, and managing the kīpulu (compost system), but we did have our own homework. This is referred to as the “Parallel Process” — and the book of the same name was our first lesson. As Krissy Pozatek notes in the Preface, “To have a child engage in self-destructive behaviors can cause parents to feel inundated with shame, and lead to strong defenses. This book is about using the crisis of having a child in treatment as an opportunity to open up to those blind spots we all have in our parenting.”

Let me say right here, finding your blind spots isn’t just for parents. And if you’re involved in anti-racist work, or strengthening your support as an ally (which we all should be doing, btw), these blind spots aren’t quite the same as those you’ve been confronting. These blind spots are ones that need excavating, with roots that run down deep all the way to when we were children ourselves. And, like roots, these blind spots can be all tangled up with each other– digging them up will make you break an existential sweat (and give you a very bad headache). So, why bother? Especially if you don’t have a struggling kid who needs you to do this work alongside him?

Let me respond by asking another question: How much do you want old habits and patterns making decisions for you? So much of our life is beyond our control– do you really want to surrender your ability to make conscious choices in the present to the thinking patterns that you formed in the past? Back then, those patterns were created to help you navigate the world. They were useful and necessary. Now, however, they are way past their expiration date. Side effects of using expired, unexamined blind spots can include getting stuck in the past, a general sense of unease, an inability to grow or fully mature, and a tendency to make the same mistakes over and over again. Oh yes, and chest pains too. Trust me, I know.

The two words that have become my mantra are “Present” and “Curious.” Stay in the moment, and keep asking questions. In order to achieve these seemingly-easy-but-actually-pretty-hard goals, you’ve got to do the work. When you shine some light into those dark spaces, when you find the courage to put your insides on the outside and take a good look, you open up the chance to be fully present in the world. To know yourself in such a deep, authentic way that you actually “show up” in all of your relationships. You open the door to growth. To pain and joy and limitless possibilities. To hope.

Baby steps at first. Fuzzy socks and mugs of tea. Lots of naps and walks. You can do it. We can do it together. Keep those eyebrows up–

Cast of Characters

March 12, 2019

I imagine it would be helpful to give a brief description of the main players in my journey, to give you some info before you dive in and start swimming upstream with me.

Cameron: my husband of (almost) 24 years (we were literal babies when we married). He has been my rock when I needed a rock, and he has also crawled alongside me when fighting gravity was too much of an effort. We are knitted together by what we have experienced these past two years.

Charlotte: our older child, age 18, whose birth threw me into the deep end of the motherhood pool (sticking with the water metaphors). Why, why did I insist on an unmedicated birth experience?? Never, never turn down an offer of pain medication (especially when your birth partner/spouse was himself 10 lbs. at birth- hello foreshadowing?!). Actually, the ironic thing is that they offer pain meds for the birth, when the most painful thing about having a baby is all the parenting and stuff that comes after delivery. . .

Ollie: our younger one, age 14. Ollie’s birth came exactly one month before his due date, and should have given me a clue that he would be the one charting his own course, thank you very much. Any mere mortal would get carsick just trying to keep up with him as he forged his own way. So many zigs and zags and loop-de-loops, big rolling ups and downs enough to guarantee you’ll lose your lunch. To be fair, he has faced too many big and scary roadblocks along his way, including the fact that he was born into the wrong body (a female one). Ollie didn’t fully come to understand this until middle school; by then he carried with him diagnoses of ADHD and anxiety, along with the bonus prize of a genetic condition– the hypermobile version of Ehlers-Danlos Syndrome. All those cool circus tricks that centered around him being freakishly flexible gave our pediatrician (one of the first heroes on our journey) a glimpse into what might lie ahead for Ollie. He gently suggested we start the process of looking into EDS, and after scaring ourselves senseless with an overly thorough Google search, we began reaching out to geneticists, orthopedists, physical therapists, pediatric opthamologists and cardiologists. Ah the good old days, back when we thought things were “so hard.” We were caught up in our own little whirling eddy of grief and fear and worry, and no matter how fast we swam we weren’t ever going to be fast enough to escape the inevitable: gender dysphoria + adolescent hormone changes + ADHD + anxiety + a genetic condition with no cure=

THE END OF LIFE AS WE KNOW IT.

To learn more about Ehlers-Danlos Syndrome, visit https://www.ehlers-danlos.com