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–

Perfect and Normal

May 18, 2019

I’m a recovering perfectionist. My internal compass was set to society’s north, not mine. When I was a child, my parents were worried about my inner wiring– they could see how hard I was on myself and tried as best as they could to not add one ounce of pressure to my tightly wound coils.

My perfectionism definitely took a hit in college, but instead of taking these hits as “growth opportunities” I buried them and moved on. Even though I was no longer aiming for a perfect GPA, I kept up my training regimen to strengthen the inner voice that was my own worst critic. I showed myself no mercy. I scoffed at the thought of being satisfied with “doing the best I can.” To me, that sounded like a lame excuse.

Parenthood laughs in the face of perfectionism. Nevertheless, I persisted. Unmedicated labor and birth (at least the first time); homemade, organic baby food; breastfeeding exclusively for over a year (in spite of medical/mental/physical health challenges that would have been helped immensely by supplementing at least a little bit with formula); classical music in the nursery; mommy and baby yoga and all the other enrichment classes we were “supposed to” take.

Is this enough foreshadowing for you? I hope you can see the train wreck that’s coming, because I sure didn’t. Even though being a mother forced me to tone my perfectionism down to a heightened sense of being “normal,” I spent way too much time trying to maintain control. I don’t even like the word “normal”– sounds so boring and lacking in creativity– and yet, if I’m being honest, that is exactly what I craved. At least the appearance of it, anyway. As things unraveled with Ollie, as we all were swept from the open sea and bashed repeatedly against the rocky shoreline, my brain kept screaming, “THIS IS NOT NORMAL!” I started keeping a mental list: Normal versus Not Normal.

Normal: school days and carpool lines, extracurricular sports and plays and playdates. Not Normal: taking your child from wilderness therapy in Hawaii to a therapeutic boarding school in Asheville and then on to a residential treatment center in Utah.

Normal: coaxing teenage children out from behind closed bedroom doors. Not Normal: having to be escorted through 9 different (locked and unlocked) doors to see your child.

Normal: weekends off, school holidays and vacations, family get-togethers. Not Normal: year-round school and therapy; your child being away from home so long that he forgets where the light switches are when he finally is allowed back for a visit.

Normal: hard and sad goodbyes. Not Normal: hard and sad goodbyes, followed by a strip-search once your child returns to campus (to check for contraband).

Fear has many faces. It’s easy to spot fear when it looks like worry or anxiety, but fear also hides beneath anger, perfectionism, guilt, grief, embarrassment, inflexibility, prejudice, and even some types of humor. Fear can be both violent and paralyzing. It lurks just under the surface, so it’s easy to miss (or mistake).

How many times did I have to bang my head against that rocky shoreline before I loosened my grip on what was “normal”? How many more books and specialists did I have to consult before accepting that perfectionism is incompatible with being human? We are finally in our own little waterway, swimming upstream, and yet even now when we hit a rock or a waterfall I’m gripped by fear. But now I know what it looks like, how it shows up in the ways I think and act.

What does fear look like for you? What disguises does it use when it shows up in your life? Can you imagine what a powerful connection we could make with each other, if we all were able to make friends with our fear, to know all its patterns and tricks, and to call them out? To be humbled and human, so vulnerable and yet so strong? To not judge ourselves– or others– so harshly, because we feel fear?

Feel the fear, acknowledge it, and set it aside. We’ve all got some swimming to do together.

To The Moon (Part Two)

April 6, 2019

Time slowed to an excruciating crawl during the days before and after saying goodbye to Ollie. In contrast, the slashes of images from those days flash rapidly, assault-style, through my mind. The “last meal” the night before our flight to Hawaii. Putting him in a wheelchair for the first time because he was too sore and tired to walk through the Dallas airport. His last few phone calls to family and friends while we sat at the gate. Outbursts of anger and sadness throughout our painfully long plane ride. The actual goodbye was brief– Ollie’s choice to do it quickly was a testament to the incredible bravery he has shown throughout all of this. There would be no scene as we met the transportation staff at the Kona airport– actually the scene came right after they led Ollie away. Surrounded by happy “Alohas” and smiling tourists wearing fragrant leis Cameron and I dissolved. I managed to stay standing only by leaning heavily against a half-wall, while Cameron stood doubled over, trying to focus enough to pick up our bags from the baggage carousel.

What had we done?

We made plans to stay on the island for a couple of days, just to feel closer to Ollie. Driving to our hotel, seeing the black volcanic rock, the lush mountains, and the turquoise sea all in one vista reaffirmed our sense of being on another planet. It would have been breathtaking, had we had any breath left.

Actually, once we got through the pantomime of checking in and having the bellhop show us to our rooms, we were able to take in our surroundings and marvel at the spectacular beauty. There is something deeply therapeutic about being near the water. The flowers all around us, the birds trying to share our al fresco breakfasts, and the honu- sea turtles– resting on the rocky shore gave us brief moments of peace. If Hawaii’s natural wonders brought us some semblance of calm, being surrounded by people (families vacationing, kids laughing, wedding parties celebrating) was excruciating. I kept having to leave our meals early, overcome by the sight of a baby or small child in the arms of their parent. So much love, such potential– all I wanted was to have MY baby in MY arms.

We weren’t going to be able to see or hear from Ollie for the first couple of weeks, and that enforced silence, coupled with the dread of going back home without him, kept us off balance. We were tearing ourselves up inside– unable to stay centered in the present moment, grieving both the past and the unknown future to come. Now, after so many months, I know the signs and symptoms when I start losing my center and fall either forward into the future or backward into the past. At the time, though, that tearing-apart sensation felt like that was how it was always going to be– and it felt like we deserved it. We simply couldn’t reconcile the knowledge that we were doing “the right thing” with how gutted we were feeling. Our parenting instincts had failed spectacularly. We tried our best, and it wasn’t enough. We were holding on to the thinnest, most skeptical, frightened version of hope imaginable. It wasn’t much- just barely enough to keep us moving in spite of massive guilt, uncertainty, and deep sadness. Some days, back home, I didn’t move at all.

Ollie wasn’t the only one facing some of the hardest work of his life. We were broken wide open, and there was no going back.

To The Moon (Part One)

March 24, 2019

I have been struggling, trying to write this post.  I need to bring you through the actual “what happened” narrative, but I keep getting brought up short by my emotions, both current and past.  Despite the best attempts of my therapist (a hero if there ever was one!), I still feel a deep sorrow when looking back at our lives two years ago.  Cameron and I were flailing, struggling, so scared and uncertain. So very alone– even though we were surrounded by caring, extremely competent advisors and loving family and friends.  

If I allow myself to dream, I’d like to believe that putting these words out there just might reach someone else who is feeling alone and scared, for whatever reason.  It’s not so much the details of our story that are important, but rather the feelings we’ve been forced to acknowledge and examine that I want to share. The inside work, brought on by the outside reality.  As I said in my first post, this work is so hard that I would never have considered diving in so deeply, had it not been presented to me in the form of my child suffering. I didn’t have a strong enough sense of self-worth to tackle this project just to make me into a more authentic version of myself (stronger by acknowledging my weaknesses and letting go of a misplaced sense of control, smarter by un-learning the tricks and distorted thinking skills I taught myself to use to navigate in the world).  

So, I’m going to move forward, trying to balance both the outside story and the inside experiences.  I am unbalanced all the time (!), but after two years of working at it I can find my center a little more easily. . . .

I realize that I’ve got some catching up to do, now that I’ve introduced the main swimmers in my stream. And I don’t want to leave you hanging for too long after that especially dramatic ending to my last post. Our life, as we knew it to be, came to a screeching halt on the afternoon of June 12, 2017. That’s what happens when a child of yours admits to having planned his suicide two days’ prior, when you find out that it was only through the comforting words of your other child that your life, in fact, didn’t actually come to an end on June 10th. And somehow, you are still standing- one of the worst words in the world to come out of the mouth of your child didn’t deliver a fatal blow. You are, to your surprise, conscious and breathing, but a giant chunk of yourself has fallen off, left in the exact spot you were standing when you heard the news.

I believe that our bodies carry with them all the experiences and emotions of our past (hello IBS and TMJ and stress headaches, backaches and panic attacks)– but I also believe that I have shed actual body parts in various places along my journey. Well, maybe not body parts so much as parts of the person I used to be. These parts now mark our journey down into the rabbit hole/alternate universe we currently inhabit. When I look back I can easily see both what happened and who I used to be at these inflection points along our path. . . .

Even though we felt such an awful shock on June 12th, 2017, we weren’t entirely surprised when Ollie mentioned he had planned his suicide. We knew we were losing our fierce grip on the mirage of control, and had started looking for more help. With the psychiatrist (another hero on our journey), we reviewed what to do when you need to call the police or the ambulance for your child. We had a script we used to address the self-harm incidents– Cameron and I rehearsed our lines so that we could sound both calm and in control (never thought I’d use my theater degree for this). We had started working with an educational consultant (and hero), since the combination of Ollie’s chronic physical pain and anxiety made attending any sort of traditional school impossible. She was the one who held our hands and gently introduced us to the idea of a wilderness therapy program for Ollie.

I want to take a pause here to acknowledge how incredibly, incredibly fortunate we were- and still are– to have access to an all-star array of doctors and specialists. Even with this medical and mental health support super team, we just couldn’t give Ollie what he needed. We advocated for him in school, so much so that we took away his ability to advocate for himself. We piled doctor appointment on top of therapist appointment on top of physical therapy appointment on top of acupuncture appointment– and he still kept slipping into despair. When the idea of wilderness therapy was mentioned, I thought it would be like a really intense outdoor summer camp but with a mental-health focus. Sure, it would be hard and scary for us to leave our child, but after a summer away Ollie would come home and we’d figure things out.

(Not to spoil the story here, but that’s totally NOT what happens after wilderness therapy, not usually anyway, and certainly not in our case. This was not summer camp. There would be no first day of school photos with both kids and the dog on our front porch come fall, but we weren’t quite there yet. . . .)

I need to take another moment to express how lucky we were that the word “suicide” was not paired with an actual attempt– those would come later. We were lucky then, and we are lucky now– and I can say that not knowing how our story will end. So many other families aren’t as lucky, and many more carry the physical and emotional scars of attempts far more serious than the ones we have experienced with Ollie. I’m deliberately using the word “lucky” because it really is luck– any other word would carry implications of guilt, of responsibility, of ownership– and these words have no place in this part of our journey. Loosening the stranglehold of parental guilt continues to be a daily battle. We can’t take the credit for Ollie’s choice to stick around, and on the flip side, we can’t blame ourselves for Ollie’s self-harming and suicidal thoughts (typing this is easier than believing it).

There is much, much more to work through, this idea of how to go on functioning and living while your child’s illness is making suicide seem like a viable option– this is one of the main through-lines of my story. For now, though, I’d like to move a bit further along in our narrative– we were on the verge of sending Ollie away to a wilderness therapy program, but which one? How could he undertake the physicality of these programs while his joints were sliding in and out at random (part of the joys of his EDS diagnosis)? Our educational consultant suggested a program in Hawaii. Hawaii??? I had been saying for a while that we needed something completely different, since what we were doing was clearly not working– we needed the Moon. And Hawaii sure felt like the Moon, coming from our cul-de-sac in a Baltimore suburb. The program focused on holistic, whole-body wellness, and its location on the Big Island wasn’t far from a hospital if needed (something not available with the more traditional wilderness options out West). Given the distance, a trip out to tour the program and talk to the staff wasn’t viable, but we were reassured by the multiple phone calls with the admissions and medical staff, and by the past experiences of our heroic educational consultant. Somehow, she also managed to cut through our tight-fisted grip on the idea of “normal” and connected us with a therapeutic boarding school (TBS for short) in Asheville, NC- an option for when Ollie completed his time in the wilderness therapy program. It was slowly sinking in that the work done in wilderness was only the beginning, and Ollie would need all the supports a TBS could offer as he continued to struggle and learn and grow. Farewell, pretend summer camp and whatever imaginary homeschooling ideas I had desperately clung to these past intense weeks. Instead, we made more doctor and therapist appointments, filled out mounds of depressing paperwork, and placed endless calls to Hawaii and North Carolina.

In our free time, Cameron went to work, we went on a college tour road trip, and we tried our best to never let Ollie out of our sight (even at night). The dissonance between our outside stories and our inside experiences (between our public and our private faces) was stomach-upsetting, jaw-clenching, surreal. It’s ironic how such a universal feeling can feel so isolating.

Two weeks after Ollie’s 13th birthday, and exactly one month after Ollie’s suicide “confession,” we were on a plane to Hawaii, and


Friends, this blog is all about acknowledging how fear blinds us and silences us. And how we all need help. Please, please, if you are struggling, or if you know someone who might be struggling, know that you are not alone. Help is all around you. Call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255). For LGBTQ youth, you can call The Trevor Project Lifeline at 1-866-488-7386 (https://www.thetrevorproject.org/get-help-now/#sm.001w1z1zx183gdwjw5m1lv91ll55k). Parents, don’t let fear get in the way of having mental health conversations with your kids– feel the fear, and be brave anyway (it’s okay if your voice is shaking)– the Columbia Lighthouse Project has a protocol of 6 essential questions to help you get started: http://cssrs.columbia.edu/the-columbia-scale-c-ssrs/cssrs-for-communities-and-healthcare/#filter=.general-use.english

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 far too many big and scary roadblocks along his way. 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: adolescent hormone changes + ADHD + anxiety + a genetic condition with no cure=


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

Hope-y New Year! (yes, I know it’s March)

March 8, 2019

Hello friends (longtime and newly discovered)- and a belated “Happy New Year” to you all! Actually, what I want to wish is a “Hope-y New Year” (the word “hopeful” just feels too ambitious to me, so I’m toning it down a bit and saying “hope-y”– hope-like, close to hope, more hope than despair. . .). And since I’ve procrastinated until it’s almost Spring, this seems appropriate. Spring- the season of renewal and possibility.

It’s going to be an effort for me to maintain this level of optimism– my natural state tends more toward grim anticipation of Bad Things Happening. I’m going to approach it the same way my music teacher told me to tune my clarinet when I was first starting out– if it sounds a little flat, try raising your eyebrows. I guess this means that I’m going to be walking around with a constantly surprised look on my face, but it’s worth a shot.

Maybe I should have started out with my “mission statement”: Why “Swimming Upstream”? Why now? Well, I’m glad you asked–

I’ve been on an incredible journey these past two years, brought about mainly because I am a parent. So much of what I’m learning, though, is about more than just parenting, it’s about being human, having relationships, growing older, and knowing yourself in the most intimate, scary, empowering, authentic way possible. It is the hardest thing I have ever done, the most intense work I couldn’t have even imagined before this journey began. I have felt alone and scared so many times; fear is now my constant companion. My story, our family’s story, is unique to us, but there is so much in our hard-earned knowledge that, ironically, has made me feel my humanity and my connection to others even more deeply. I want to be able to share with you, and I really want to forge connections and community, whether or not you are a parent, in a relationship or not, male, female, questioning, young or old or somewhere in between.

Also, I’m not really good at keeping a journal. So, instead of writing for a guaranteed audience of one, I’m putting this out into the universe, in a “hope-y” way– so none of us have to feel alone. We just have to be brave enough to feel. And I think it’s a tiny bit easier if we can do that together.

“Swimming upstream” is a recurring image in my mind– to me, it implies facing adversity headfirst, following a path that is the exact opposite of “normal” or easy, the journey so rough and the water so turbulent that it’s impossible to see or hear if others are there next to you. It also implies a level of cardio and physical strength that I could only aspire to, but hey, I’m trying to be “hope-y” so I’ll go with it.

My limited understanding of fish that swim upstream involves salmon, who travel from open waters back upstream to where they were born so that they may spawn their own babies. So, it also plays with the idea of “home,” which is an essential part of any journey, heroic or aquatic. And it involves giving birth– again, relevant, because that’s how I ended up on this particular journey of mine. For the salmon, swimming upstream to mate and birth their offspring is the last thing they do before dying in their home waters. My journey isn’t finished yet, but again, I’m hope-y that mine will have a slightly different ending (or at least a prolonged in-between time from spawning to death! But dying at home does sound like the way to go, if I had to choose).

Finally, it is through reading the words of so many others that I have found strength, comfort, humor, escape, and reassurance that I’m not totally alone in feeling totally crazy. My first shout-out has to go to Jenny Lawson, The Bloggess, whose books and blog posts have given me the best kind of cardio workout- the gut-busting, crying- laughing-til-it-hurts kind, and so much more. Please visit her site if you haven’t yet: www.thebloggess.com. There are many more writers, doctors, therapists, teachers, and gurus who have lifted me up on this journey, and I look forward to offering my gratitude to each of them along the way.

For my friends and family (and my Ohana), my gratitude knows no bounds. Neither does my love.

Namaste– and let’s keep those eyebrows up. . . .