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

THE START OF LIFE AS WE NOW KNOW IT.

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 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