There's So Many Colours, Without The Dirty Windows

Rainan Marrow turned 2 on October 28th. That whole "leading cause of death in children under two" line stabs out with blind grief and rage from the pages of the blogs of so many parents of kids with SMA. I'm so fucking grateful to have my son outlive the introduction to this blog.

THE DIRTY WINDOWS

That day he was so moody and lethargic. We'd invited some friends over, lit a bonfire, spread out blankets, toys and instruments behind our house, invited our beloved magician uncle. But as the guests arrived, Alex and I were keyed in to Rainan's attitude, breathing, posture, making eye-contact between conversation- does he look rather purplish to you? See how his hands are cramped up? He's barely reacting to his best friend's arrival....

Like this picture, normalcy can evade detection as a trick of the eye- if you want to see it, there it is. And it seems like most of our friends and family do. People want it all to be okay, so they fake it until they make it, or until he falls off the tricycle, or out of their arms, or headfirst into the hot-tub, or wont let them hold him because he knows they suck at it and hates being slumped over and having his airway blocked, is scared of the puppy because he can't protect himself when it tries to maul him with puppy love... I fucking hate how people awkward-smile and evade, even psychologize his behavior rather than face the truth- 

"THANKS AUNTIE, YOU DON'T NEED TO SHAME-TRAIN HIM OUT OF WHINING FOR YOUR FAVOR, HE'S NOT DISPLAYING ANTI-SOCIAL CHARACTERISTICS BUT IS LITERALLY TRAPPED IN HIS BODY AT THE POINT IN MENTAL DEVELOPMENT WHEN ALL HE WANTS IS TO CHASE AFTER HIS OWN WILLPOWER SO HE SHOVES IT ALL INTO HIS VOICE, ALBEIT PITCHED WITH AN EDGE THAT DRIVES ME FUCKING CRAZY SOMETIMES, WHAT THE HELL DO YOU EXPECT HIM TO DO?" 

I don't usually scream, or even tersely mutter this, though it colors my interactions with others. I want to educate people, but people don't want education, they are addicted to their ignorance-is-bliss. When either Alex or I are particularly vocal about our process, Rainan's condition or what we need and aren't getting from our community, this magical arm's length space seems to open up all around us. So much of my adult life I have bellowed into that sort of isolating emptiness and called forth the growth and will to fill it back in with healthy communal relations, valuing community above all else. Now I have latches on my doors and use them. I have set boundaries around privacy, stopped making my table a place to gather and eat, my home a place to gather and be together. If people cant take the bitterness, the grief, the fear, the rage, if their sense of self is so goddamn precious that any mistake they make and are called out on gets dredged up as a mortal wound for all eternity, then fuck em.This isn't even just about Rainan anymore. If you can't show up and be accountable, if you can't meet me halfway, if you can't give reciprocally, if you can't bear the baring and not use it against me later, I literally don't have the capacity to try and be anything else for you, or try and articulate how you might be something else for me.

I want to hear more stories about Tragic Magic where it sparkles and inspires. I mean, people will say, usually the one time, "Wow, you are so courageous and inspiring and your journey is really incredible, etc...", but on the day-to-day, folks treat it more like a venereal disease.

SCRUB-A-DUB: DOING THE WORK

I am so grateful for the friend who called about visiting last week. I hadn't spoken to him in several years. And he just matter-of-factly asks "So, your son's condition, does it make him more susceptible to normal germs in kids?" and my heart was like FUCKING THANK YOU for asking! For not showing up sniffling with a cough and when asked "Are you sick?" defensively say "No (suppressed cough) I'm fine". 

I am so grateful for the friend who, after a very rough night of Rainan non-stop screaming, after I passed my breaking point, after listening to me freak out and rant and sob about it and how its bullshit when he says I could have gotten him or anybody else to help me because its socially unacceptable and in the moment would have been seen as me being a co-dependent, needy mom instead of a co-dependent, needy mom of a special needs kid, after all that he didn't key in on how I offended him by saying it was bullshit, or shame me for not taking preemptive steps to train everyone in camp on how to hold Rainan properly, or any other nihilistic thing, but rather "Wow, thanks for sharing. I was really annoyed last night and bristling by your attitude this morning but hearing what's really going on with you makes it way easier to co-exist with and help out."

I am so grateful for our land-mate who helps out when he sees the need and dips out when he sees the need and doesn't ever make it about him, neither the shame nor the glory. I'm sorry, for those of you reading this and for my family, that I feel the negative, disparate examples outweigh the awesome, nurtuting ones. The only other family I know of in this valley who had a special needs toddler moved to Port Townsend. Maybe it was for Seattle Children's. Maybe not. 

Rainan is so articulate now, and he so obviously craves more dynamic social interaction, more time with his favorite non-parents. I want to cry every time he is near someone he loves and repeats their name, begging for some one-on-one interaction, and because he's not underfoot like any other toddler or puppy, he gets the hi-goodbye on their merry way to more self-satisfying ventures. Are Alex and I the only people who actually give two shits about this amazing person? I just think children are such amazing gifts from the divine, such teachers and healers. Years before I became a parent I decided no gathering was worth going to if they didn't allow kids and have communal kitchens. Kids and elders are what will close the loop and mend the hoop. I love my friends children and regularly fantasize about a world where all the adults can work their insanity out so the kids can be together. I want to be with them, even if I can't actually figure out how to share dreams with their parents. If I drove (endlessly my trump card) I would gravitate towards them... and I find myself time and again telling people "Sure, I ask you to spend more time with Rainan because I need the me-time, but I also ask because he needs the you-time".... and still, where is the loving grandma? Where is the reliable uncle who gets hacking implements to make "rough housing" feasible for this kid who wants it so bad? Where is the magical auntie who takes him on walks and works out alternative ways of communication so that he can thrive instead of annoy people in his chair-bound existence?

I've heard it said many times that one of the challenges with parenting is getting your identity tied up with those of your children. I've met mamas who's hackles raise even if you mention constructive criticism about their babe's behavior. Papas whose own obsession with success and terror of failure wraps its ugly claws around the creative neck of their sons and chokes the drive and confidence right out. Parents in Mickey Mouse sweaters listening to Justin Beiber eating fish sticks and dog-paddling in the kiddie pool of life's stream. I think this is what the caution was about. But now, view from the forest, I'm like, how can you not get your identity tied up with that of your children? What a very American thing to admonish! We are connected by a conscious current of spirit and blood, ancestral memory, all the migrations, genocides, lovers, births, back into the plains, the trees, the ocean, back to finned self, wriggly self, single celled self, back to the Spark. And in the womb, from the Spark, we relive our shared history unto the moment we gasp for air and add to the story with our every breath.

Rainan's healing is our healing. And through my self I am learning that healing is not linear. It does not obey the laws of time and space. It surges forward, takes rest, lolls sideways belly up in the sun, enjoying itself. It gets bored and rambles on. It gets cocky and impertinent about itself. It gets drunk and makes an ass of itself, then wakes up with a shame over and quiets down. It is driven by its nature towards wellness and wholeness, self awareness and fulfillment. Similarly to God, once we pay it homage, give it agency and respect, recognize its greater wisdom and sense of direction and let it take the lead- it natural leads us to itself. Who is by nature well and whole, self-aware and fulfilled. We just have to be willing to resist atrophy (ding ding ding), stumble and rise with our own grace, do the work. 

THERE'S SO MANY COLOURS

I have been reluctant to update this blog for a while because I wasn't, and am still, not sure how to proceed writing about healing. There's the whole to-spinraza-or-not-to-spinraza way of looking at things, what we aren't doing in terms of treatment (driving to Seattle monthly for lumbar punctures and injections) and what we are (working with a homeopathic practitioner based out of Montreal). But there's other modalities for describing healing that dominate my reality. Ones where Rainan outliving me is a deep desire, but not the goal. Where his death doesn't equate to "failure to heal". Where everyday with him brings me closer to my ancestors, to my partner and my self. Where hitting the piano hard in the keys til the altar starts jumping up top and the little skulls and dried flowers all start trembling is my support group. Where fears about death have led to paths-less-taken to Spirit. Where fears about an impending scenario involving pneumonia and hospitalization brought me closer to one of the loveliest, most powerful plant allies my homeland has in her family of relations. Where my ignorance, never handed over with my power to priests in white coats, has instead dissipated as my knowledge has grown. Out of love and a growing allergenic resistance to stupid fear, I am becoming wiser, stronger, better educated- not in the way my mother culture would have it- no I still suck at prattling factoids, my intuition leads me around like a honeyguide flitting from branch to branch and I track with my tunnelvision, probably looking all bogged down and asinine but goddamn if there aint honey dripping somewhere in this desert.

We're getting better at this. Rainan and I drove to Nevada with a group of friends to harvest pinenuts in October, and though SMA embittered many a moment, the sweet taste of pinenuts sure as hell overpowered! So did the late fall song of the aspen trees, the glory of the high desert waterways, the expansive sky, the stars at night, the wild burros, the nourishing time with friends, the hearty meals and quiet days spent under the raining branches of these benevolent trees. Rainan loved it, helped pull pienuts from their cones and put them into canvas buckets. Offered up his own glorious gratitude songs. And once we got back to Washington, he helped plant pinenuts, digging holes, dropping the nuts in, sprinkling them with duff from the mothertree and covering them with dirt. All worth trudging up the mountain with him on my back. All with learning new ways to constantly reposition him for safety and comfort while respecting my body's need for the same thing. 

This summer I finally ousted myself from the total isolation I had created and went on road-trip after road-trip. Rainan and I really got down with the partner-in-crime vibes. We flew in an airplane and narrated the apocalypse from above, soaked in hot-springs until uppity bitches were all over how pink he got (back up, this child claims he was born of the ocean, sang his first gratitude song for hotspring waters and damned if you are keeping him from this healing) breastfed through a total solar eclipse, ate mountains of sushi murmuring sensual prayers to Mama Ocean over every bite, harvested the fruits of many lands, slurped the meat juices of many beasties, slept under towering trees and in static suburban backyards, prayed together, screamed at each other, and all around lived.

Back home can be harder. 

Here we have many tools to aid in his anatomical development, respiratory health, mobility, physical therapy... and if any of it falls to the wayside, I feel like I am failing him. I haven't traditionally functioned well as a highly organized, get-er-done consistent type person. I admire the SMA moms who seems to thrive on the amped-up caretaker lifestyle, going from water therapy to PT to home massage to play dates to benefit concerts... But coming home from this autumn of travel, I feel like I have brought with me more forgiveness for what I don't do enough of, more acceptance of what we're really getting into here together, and more gratitude for what we are doing right, whats working. 

We're weaning, and rocking it. It is scary and identity-altering, but luckily our family centers much of our activity around the gathering, processing and eating of good food, and when I can't win the battle-of-wills with a two-year old, it seems like Papa or a well-timed uncle will step in and man-handle some spoonfuls in. There is all this hype about SMA, calorie intake, needing to eat every four hours, needing to eat vegan- I admit it penetrated my defenses and makes me panic at times, but honestly, Rainan loves meat, eggs, and fruit, above all else, maybe goats milk now that I am a less available food-source. I don't buy the restricted diet for the half-dead cancer patient. Eat what you love. Good food gives good life. Simple. So long as he is maintaining an appropriate weight I am feeding him the trusty Heathen Diet. 

Appropriate technologies are at play here. I dont want to ever come off as some stalwart purist- we are using what preventative measures are reasonably available to us. He has physical aids when necessary, a stander (pictured two above) to help improve bone density, circulation, flexibility and strength, a really fancy machine called a cough assist (nicknamed "Teeha" for the sound it makes) for respiratory health and in times of sickness, aforementioned AFOs (Ankle-Foot-Orthotics) boots to stave off deformity from non-use, regular excersizes, massages, tinctures, suppliments, vitamins and prayers. 

If you made it this far in this post, I commend you, again, for sticking with it. I guess I could have just said "Hi guys, Rainan is 2 now. He was a hobbit for Halloween. His Papa carried him everywhere dressed as an Ent. He repeats the same sentence twenty times in a row and freaks out over seemingly inconsequential things like most two year-olds. Basically he is doing great."

Coulda Shoulda Never Woulda 

Hot Wheels

"Mam! Loot! Mama! Loot! MAMA! LOOT!"

These emphatic words have drilled deeply into my psyche, so that even in the stillness of evening, as the warm winds blow to rustle the saskatoons and groan the roof, as I preoccupy keeping updated on the first fires of the season down valley from us, as I am enveloped in the bath-like submersion of Baby Free Time, still, STILL-
And, it's awesome to be so freakin annoyed by two little words, because they mean Rainan is exploring. I wish I could share more footage of him learning how to maneuver this little red rocket to sovereignty, but I feel creepy trying to catch authentic moments with him, so you'll have to take my word for it. In this short video you can see how hard he had to work in the beginning to get those wheels moving! At first he was excited by the implications, then frustrated by his limitations. If he got stuck he would freak out. He wanted more from day one. But over time he got real good at using it, and though he is slow and it takes lots of effort, he is SO happy. It only works on smooth floors, which luckily the downstairs of the a-frame have, so he has one room to explore. Aside from occasional tries to get out the door or into the carpeted back room, he is happy to have this much. We both smile and laugh when he succeeds at getting into something he shouldn't, he likes to "chase" people, run over sleeping dogs' tails and even got in on an ecstatic dance session with a bunch of us leaping over him and dancing around and with him.
Having been using it for a few months now, even though he doesn't spend all day in it, he rally identifies with his "veews", wakes up asking to get into it first thing and talks excitedly about returning to it after being away from home. It makes me want to find other ways to expand his independent mobility.

There is an awesome non-profit called Go Baby Go that goes around teaching parents how to re-wire hot-wheels and make them accessible for littlin's with disabilities. Insurance companies won't hardly let anyone under age five have an electronic chair and they are expensive as heck, whereas a little kids electric car from WalMart might run you $200, plus maybe #100 more for pvc and foam to make it more stable. The thought of Rainan rolling along while we pick berries, getting stuck in the mud and chasing chickens sounds amazing. My gears are grinding trying to figure out ways to make our life wheels accessible, knowing full well we aren't living in the suburbs where the house is linoleum to sidewalk to accessible van to accessible school. It'll look different for him, but something so small as this little red wheelchair can change so much. That's what I am learning right now- appropriate technologies used appropriately can go a long way with you having to completely rearrange your life- or theirs.

COPPING A GRATITUDE

Nap time, my time to shine. I cannot multi-task very well, and writing anything beyond a complete free-for-all tangent requires some psychic space. A general sense of urgency (naps become shorter and shorter!) limits that college-format, rounded out essay in me, so I'll go for letter-to-an-old-friend.
First off, before diving into my intended theme, I just want to say 18 month olds are amazing, especially when they are your life loves and thus you wait with baited breath for every new word, which comes several times a day. I am having so much fun with Rainan, exploring communication and self-expression, naming the world so he can give it voice. I cherish his unique expressions, self-appointed titles, complicated babbles and love songs!

BAD METAPHORS FOR BAD TIMES

The other day a nurse said to us "life with a kiddo with SMA is like boarding a plane to move to Sweden and ending up in New York. You still love it, but it definitely isn't what you were expecting." I appreciate her attempt at going philosophical with us, though the metaphor doesn't translate across cultures very well. How about, "life with a kiddo with SMA is like spending a long time preparing to spend a long time on horseback in the wilderness with your family and instead spending a long time at Seattle Children's Hospital. Relatively speaking, you are really grateful this place exists, and this little person exists, bu you are definitely not happy you ended up there."
Okay.
Let's do some Rainbow In the Shit-Storming here.

Shit:

Rainan has a terminal genetic disease that requires we have lots of appointments at a big hospital.

Rainbow:

That big hospital gets to be Seattle Children's, a family-centered, state-of-the-art Temple of the Medical wherein any path you should choose to venture down, from high-tech medicine, treatment, equipment and therapeutic physical aids to heart-centered palliative care are easily accessible and try not to make you feel more like shit nor a stranger in a strange land than you are apt to already feel.

Shit:

Rainan's feet are becoming deformed from lack of use and in time wont be able to bear weight even if he could put any on them.

Rainbow:

The technician who helps cast his legs for therapeutic shoes was really gentle and sweet and gave us OPTIONS! for Velcro and ribbons, one of which had horses on it. Woohoo.

Shit:

Rainan can no longer sit up unassisted for very long and hunches over so dramatically that he will likely develop scoliosis.

Rainbow:

Thanks to our *current* insurance and their alliance with said family-centered hospital, we can get head support neck braces, trunk support body suits and soft helmets to protect and support Rainan from sitting and playing to doing horse therapy so that we can work to keep his developing body limber, aligned and pain-free. This may be fighting the current in that Atrophy necessarily morphs the body, but should he receive treatment to regain strength or should a cure arise, maintaining as much of his body's potential will be wonderful for him.

Shit:

Rainan will likely never walk.

Rainbow:

Thanks to all the financial support friends and family lent us, we were able to buy out of pocket a small, light-weight, low-to-the-floor wheelchair that, though it hasn't arrived yet, I am hopeful he will be able to push to roll around the downstairs of the cabin and thus experience the independence he so desperately craves to explore. (ZipZac and pictures, hopefully, coming soon)

Shit:

SMA means Death By Respiratory Complication/Infection. Unless the earth takes him back beforehand by one of her other myriad ingenious means, Rainan will very likely die when his lungs can no longer draw in enough air to sustain him, he slips into unconsciousness and his body shuts down.

Rainbow:

It may sound strange, but I find the honest and directness that the doctors we deal with offer us to be comforting. My heart wants to explode, my mind wants to slip and slide out of the grasp of the inevitable and find some way to maintain blind hope, to maintain control, but if I can accept what this diagnosis really means, then all of the seemingly huge decisions like whether or not we persue Spinraza treatment take on a new light- it isn't buying life, it's buying time, it isn't a question of Do Something versus Do Nothing but defining what quality of life means for your family and following your heart there. As we walk in the valley of the shadow of death, we may be able to hide a while, linger at this or that impasse, but ultimate we are headed to the other side, and what we do have empowerment within is how we walk that walk, what we choose to see, sense, notice, where we direct our focus, how we spend our time.

DOUBLE RAINBOWS

 OVER THE VALLEY 

OF THE SHADOW OF DEATH

Which leads to my last brutal metaphor, wherein the Shit is that we have spent years envisioning a beautiful, earth-bound, simple yet epic, horse-powered, off-grid, in nature existence for our family. Five years ago Alex and I sat around a big fire with a beautiful group of friends under the Beltane full moon and we unknowingly helped weave the most epic and influential envisioning circle I have ever experienced. It sent us home reeling, we bought packing and horse books, left the west-side fairy tale we lived in and headed for the high desert where a wise and wily old coyote taught us how to move, think, see, tend, give back and stay connected in the New Old Good Way. We slowly acquired crucial life skills, knowledge of place, horses and gear for them and ourselves to travel the countryside. We set up a land-base in Twisp, in an amazingly abundant, vivacious Home Place. We kept on keeping on, learning how to be in right relation to people, working on ourselves, learning how to go out with our animals for longer and longer stretches of time, learning about this land, what it is, how it is, what it might need and how we might give it. We started learning how to drive and looking for a wagon so we could go to the next level, allowing our particular family, with youngins and an albino mama bear to travel more realistically, so papa bear didn't have to wake up at four every morning to start packing so we could walk before the heat of the day.

The Dream is big. Multiple wagons, riders, packers, goat walkers, bicyclists, support vehicles, circus tents, educational programs, Saturday night radical entertainment, community building, work parties, old school ways of moving, thinking, feeling and being brought into this rapidly computerized and isolated world, trickling through the cracks, flooding empty spaces with love and seed visions, moving like a gentle, colorful, nutrient rich waterway across the land by easy ways, to lap at people's feet, offer them refreshment, inspiration and strength, feed the roots, the trees, the animals and plants. Some of the people from that original visioning circle still contact us sometimes, say things like "still loving the dream guys. I'm so there once you get it going..."
We are on a slow track, Dreaming is one thing, Being the Dream is another. How to keep the animals safe, happy and healthy. How to navigate the modern legal system around being a free person in enslaved landscapes. How to tie proper knots. How to stay fulfilled in slow-time, in a rainstorm, when aLl you have left is beans and rice.

The Shit is that, with Rainan's diagnosis, everything went on hold. I mean, we are here, the animals, the land, but it's like our waterway got dammed up. The GoFundMe we were prepared to do to get the wagon scene going ended up being a fucking depressing theme around Rainan's sickness. We don't know how to plan any trips out any time in advance because of doctor's visits. We thought by this age we'd start sitting him in the saddle with one of us and in time be able to do pack trips both riding again, but he is a handful to keep upright in your lap in a chair, nonetheless atop a moving steed. We have to ask ourselves, can you responsibly take a Cough Assist on a wagon, or do we need to stay near the electricity of the house? Should we give everything up and move to the west-side, closer to the hospital? Do we make do with Limbo until Rainan is gone, knowing that could be a few months, years, decades? Suddenly instead of spending most of my free mental space thinking about animal training, gear improvements, landscape, seeding strategy, crafting and designing stage shows around apocalyptic freedom songs, I am instead learning about genetics, nutrition, medical equipment, death and death-phobia, wheelchairs, skeletal-muscular systems, how they work and how they can not work, what extreme stress can do to relationships, what love can do to life and death. For the last few months since his diagnosis we have been adjusting, orienting, gathering ourselves together having realized we are in the Valley of the Shadow of Death.

The Rainbow here is that I feel we are beginning to find the authenticity in this walk. Some of the horrors that we could not stop staring at in the beginning have become tiring, useless, worth knowing they exist and worth turning away from. Some of the pathways through this valley are longer, buy us time, might be easier, but that's the modern valley bottom- dammed rivers, clear-cut berry thickets, cookie-cuter houses, relegation, augmentation. We are in the foothills, figuring it out- not up there on the ridge-line taking in the vistas and lightning storms in stride, not too far from the benefits of the valley, nor too close, where wildness and spaciousness still visit and commingle with the self-reliant.

We are learning what we need and don't need. We are learning what we want to offer Rainan as a life, lived in this valley. I can say lots of wonts, donts, cants. I want to focus on the wills, dos, cans. And though of course we cannot see what is beyond that next blind corner, we are ready for this stretch of the trail.

So five years later, on the Beltane full moon, we got a wagon. We can still carry him with us, he might not ride horses, but a wagon is really a glorified wheelchair! He may not be able to sit up in a backpack much longer, but he can still rest in a securely strapped down carseat in the wagon and enjoy the world passing by at 3mph! He might need to plug in if he gets sick and needs help clearing his lungs, and lo! Modernity! Solar panels! Battery banks! He may not have full access to his body, but he has full access to his heart, his mind, his senses, his spirit.  He might not be able to do very much as time goes by, but if he can be a part of something beautiful, that sounds, smells, tastes and feels real and whole, a bumpy road, a rainy afternoon, a warm cup of seasoned bone broth, a swooning three-part harmony, he will be doing, in the sense that he is a living loving member of this clan.

We will not shelter him from the crazy beautiful living on, of and about earth mother that gave him this flesh, imperfect as it may be, so that when that flesh is laid in the ground, however old, in whatever condition, under whichever circumstances, he does not feel a stranger in that resting place, and when he looks back on that valley through which we traveled, he can look upon it and see the beauty, the memories, the willingness and love.

The Dark Side

If you are struggling to maintain a positive attitude as this seasonal transition lumbers forward, maybe don't read on. I bare everything, I spare nothing. 

Not-winter-not-yet-spring funk. As mercurial as the weather. One day it's snow melting, ground baring, plans making, the next it's snow making a comeback, wait a while longer, cabin fever. Trudging slowly through the mucky muck. 

Currently thoroughly fucking depressed. 

It's one thing, the beginning of the Tragic, unbelievably painful, but it's all so new and there's lots of movement in it. Now comes the fatigue. The doldrums. The horror of realizing that a terminal diagnosis, especially one with brand spanking shiny new treatment, might mean prolonging Death for years. Then again, there was that encounter last week with a super sick little kiddo, and if that hit him hard, who knows, could be weeks.... the challenge is to stay ever-present in the Now. A good lesson for anyone, an essential one for us. But then the day to day can feel like torment. First there's the incessant wave of appointments, considerations, risk assessment, phonecalls, paperwork, applications, appeals, equipment, therapy, insurance letters... and all the unspoken things that wipe us both out, like said encounter with sick people, both of us making eye contact while their newborn slobbers all over my shoulder, then I politely excuse myself to go inside and immediately strip my clothes, sanitize my hands and arms and run upstairs to comfort Rainan who has been screaming awake from a nap while I try and fend off inevitable exposures. 

Rainan and I playing, stacking blocks. Maybe it's his mood, maybe it's the SMA, but he can only stack 5 high. He used to stack 9. Tears well up in my eyes. The Unknown is excruciating. I take his lead. He takes the 5th block off and puts it back on over and over again, to solicit approval from me, and I give it freely. I used to think that sort of praise made for spoiled children but right now I don't care. 

His arms feel so thin and fragile when I help him back up from a tumble. I cradle him and bury my face in his hair, breathing in his scent hungrily, willing my body to never ever forget him as a plump, healthy looking baby. I've seen videos enough to have a sense of where this is headed. If he lives to teenagedom, he will be as a baby, thin and frail with an over sized looking head and big beautiful eyes, an innocent smile cradled in the arms of a caretaker.  I cannot become too hopeful about experimental treatments that leave toddlers screaming from lumbar puncture headaches and muscle spasms. Every day is one day closer to an Event Horizon, aggressive treatment, I cannot take solace in the idea of voluntarily driving hundreds of miles to hand my son over to technicians who will steal his consciousness with anesthetics, wheel him away from us, bend him into a tight little nut and stick a needle into the sacred chord of his spine. We didn't circumcise. We didn't believe in handing over the blessing of life to someone who would inextricably change the physical form, without knowledge or consent from that life. Now we know nothing. On one hand, a lesson all parents learn- you make decisions for your children, you do the best you can with the power to steward life until it can steward itself. You hope you never get a phonecall from your grown kids asking you with trembling anger in their voice why you did such-and-such when they were young and powerless. I have to sift through experiences these days and ask myself, is this a normal parenting woe, or a consequence of this diagnosis?

I tickle his back while he fretfully falls asleep. I send little kisses up and down his spine, aware where the spinal cord becomes lumbar, sick at the thought of puncturing membranes not truly meant to ever be infiltrated lest by the fangs of death. 

I am reading Stephen Jenkensen's Die Wise: A Manifesto For Body and Soul. It is beautiful and brutal, his courage admirable, the questions he raises terrible and liberating. I feel like the world around me adjusts to the Creed of Hope, that Spinraza is The Best You Can Do and so we are courageous and buck up, while in Jenkensen I find corroboration for some of the deeper intuitions and feelings I have around death and life. I am both grateful for his words resonating with my innermost feelings and feel isolated on a journey to look at the deeper costs of medical technology and aggressive treatment regiments in a death-phobic culture. 

As I have felt at many of the more notable chapter-turning moments in my adult life, I pine for the Old Ways, for a life-affirming, intact culture with elders and a sisterhood and family to help guide me through with stories that have fed us since time immemorial, with a worldview I can lean against when the Unknown incites vertigo and I feel faint, with anecdotal rituals to help me weave together the pain and the beauty, the fear and the hope, and soothing spiritual balms to help love spread like wildfire to consume all of existence rather than threaten to implode and only consume me...

No darkness so dark that I cannot give praise to the light. To life. To the moment. Let me lift up long enough to give praise to this moment, belly full, feet firmly planted on the ground, my son napping peacefully. Thanks for my son, so beautiful, hilarious, giving and loving. My lover, father, rock, jokester, best friend Alexander, may his harvesting adventure give him peace this afternoon. Yes, and praise be that we struggle with sickness and not violence, greed, corruption, starvation, exile, torture, persecution. I am grateful to be able to feel, to be able to love deeply, to be able to ponder, process, seek and strive. I am grateful for my creativity, muse and confidant through the varied landscapes of life. I am grateful for me eyes, that I might see, my hands that I might hold, my lips that I might kiss, my ears that I might get annoyed by the screeching of, my nose that I might smell, my heart that I might ache with love for Rainan Marrow. 

Good Old Update

Time could be perceived with much distortion, or is it the motions of this body-mine? I write in my journal, float along for a few days, muster the focus to pick up the pen again and... oh my, ten days have gone by? Really? I have to look at a time map to figure out where I've been. I've always been rather floaty, and calendars help me through the more vaporous times to maintain a solid narrative. If I get too lost, or get to despairing from the end of a magical tether tying me to reality, I can always be reminded of the physical realm things that have come to pass- 

• finally finished unloading the trailer from Buffalo Country- procrastination is like a carton of eggs in a forgotten cooler.
• Alex continues to steadily bust out braintan and barktan deerhides
• I cut out the paper and leather for seven new journals, bound one
• Pulled the first pack saddle into the house for yearly deep cleaning/oiling
• Spent way too much time indoors, reverting to my base-line indoor-kid ways, peering out at the brilliant grapple between winter and spring with detachment
• Occasionally (not daily, goals be damned) don the baby carrier and walk to town. No longer sore afterward. Still intimidated by the burly hill for the return walk but we're close.
• Alternating between periods of debilitation, mind off soaring in research, communication and blessed be Frank Herbert and the escape into Dune.... then I loo at the unpacked bozes from Montana, or the apothecary in deep disarray and say, I can do this, and judge the Togetherness Of My Shit by alphabetized tincture bottles and sharpened scissors.
• We drove to Omak for physical therapy, impatient with the getting-to-know-you pace and long car rides between these cities, but Rainan loves playing with these gentle women and their arsenal of novel toys. 
• Herbalist mama from Olympia sent us her son's outgrown Spio Suit , the hope with compression garments is that it provides extra support so Rainan can sit up straight again and ward off what many find to be the inevitable curvature of the spine and scoliosis in people with SMA
• The fundraiser that Alex's sister Rachel started has raised about a thousand dollars a day, let many people who might not otherwise have found out know what's going on with our family, and opened up communication with long lost friends and long silent family members. 
• We drove back to Seattle for our second appointment with Seattle Children's Hospital. The retiring head of neurology passed our care on to a brilliant and friendly woman who met us very presently, shared practical and theoretical musings around SMA, care and treatment, heard us out in our frustration around long-distance appointments (so far, so much driving, so little doing!). She explained that regardless of how many copies of the SMN2 gene this next genetic test reveals (the gene that compensates for some percentage of one's Survival Motor Neuron production) Rainan presents as Type 2, with clear lungs, a strong voice, and satisfactory ability to sit up and control his neck muscles. She assured us that folks with Type 2 tend to be relatively stable for longer periods of time then Type 1, and real noticeable changes in his body's abilities are likely to be measured over several years, not months. She siad he is an ideal candidate for Spinraza treatment should we choose to move forward with it. Though that choice is indeed a bold one to make, we would likely not meet tremendous obstacles should we proceed. This brought an immense sense of gratitude for the families who have paved the way to the sort of scenario we played out in the hospital, so very different from the ones families have experienced for decades with SMA. 
• Realized if we are going to be going over to Seattle often, we have to learn how to Do City better. We did alright, going for long wals and enjoying an exceptional meal at an Indian Restaurant, but we can make some bomb lemonade from any ol' feral lemon tree. 

I guess that all did happen. And the sweetness in between- wet snowflakes the size of your palm at dawn, young coyotes dancing on the edge of the meadow, old ones shot for no reason and brought to us to skin out, steamy wood-fired hot-tubs and the first Mountain Chickadee of the year.

I want to write about all of the healing that this situation is bringing up, the opportunities for everyone who swirls around with Rainan, but nap-time is just about finished and a moment cuddling with Papa Bear before the fire is worth a thousand words, so, until next time....

SPINRAZA! (Or, Making Deals With the Devil)

DISCLAIMER: The following is a long-winded rant elucidated by a distraught mother living in topsy turvy times dealing with multi-faceted challenges far beyond what the human-animal generally has capacity to fathom. If you do not have capacity in your heart to bear it, don't. Otherwise, take my hand friend, let's face-plant into the rabbit hole...

Parents of children with SMA tend to have similar narratives about the time of diagnosis. Your child has SMA. There is no treatment or cure. Take them home and love them. That is all you can really do. And until very recently what came next has looked tragically similar as well. Parents took them home, loved them, and watched them become weaker and weaker, watched illnesses and infections hospitalize them, accelerate weight loss and weakness, graduated the disease to breath-assist, feeding tube, and eventually (or suddenly) for so many, death.

With the first wave of research I did after receiving Rainan's diagnosis, I read these stories, the life expectancy for each type of SMA, the necessary medical interventions for prolonged life. And though I briefly read that a very new, very expensive treatment had been approved by the FDA, I also read that it required regular spinal taps, had a relatively high chance of causing respiratory infection (kryptonite to SMA babies) and could be fatal due to the immense stress it puts on kidneys. That was an immediate, gut-reaction NO for me, and so I walked away from that first wave of learning and entered into mourning. I cried a lot, I kissed and hugged Rainan a lot. I promised him that we would not waste our precious time together with fear and needles and doctors but would continue living this life that we invited him into, that he came so willingly for, that I would sing with him until he couldn't sing anymore, that I would feed him tasty morsels of all that is good until he could not eat anymore, and that I would get into the best shape I can and would carry him all over this land on my back until the end.

Over the next few days I read more stories, got a better understanding of SMA and our options really sunk in. I had to ask myself and Alex some really hard questions. Like, if we chose to do as we initially said, would we actually be able to go through with it, to watch our son waste away, slowly starve and struggle to breathe until the end? Or would I balk upon witnessing his pain and end up sitting with him in a hospital anyhow, accepting the tubes and drips and pumps and beeps of medical mediation, maybe buying us time, but almost certainly ending there all the same, with him on morphine to spare the struggle of death? Here I think of when my mama and I first moved to San Francisco and I said I wanted a pocket knife, and she advised that I not wield a weapon unless I sure as hell intended to competently use it. Could I actually imagine stabbing someone decisively? No? Then maybe a knife isn't for you honey.

Imagining The End with Rainan is unbearably painful, but with a disease like SMA, time is of the essence. The disease isn't procrastinating, neither should we.

Though there are amazing informative websites available on the internet, I found most that I first encountered to be painfully unfamiliar, distant and cold. I needed something more emotional to help me process this. So I went to social media. Neither of us has Facebook, but we have an Instagram account for our cottage indsutry and through it I found little odd things like #fucksma and the humour of these unbelievably strong families to be oddly comforting. I found an herbalist with a four year old son with SMA and she agreed to talk with me on the phone. I am so grateful for those two hours of super-downloads on life with SMA, her son's story, navigating hospital visits, great at-home aids, herbal support, nutrition concerns and so much more. Her strength floored me. Looking through pictures of their beautiful family broke my heart, because her son was diagnosed around the same age Rainan was, when he was a similarly beautiful blonde cherub baby sitting prettily to the side of the garden, the big brother's antics, the ocean... and then the progression, the  hospitalizations, the tubes, the aids, the transformation. He is still so beautiful, a child who loves his family, painting, food, the beauty of life... yet I can only imagine how he would have been at four without SMA, and I know his family must too because I can already see little things in Rainan as he becomes weaker that otherwise would not be a part of his general bearing. Babies born so perfect, then a diagnosis that doesn't match up with your happy one year old, then you start to notice things, then you don't have to look for it because it's all too obvious.

Despite all of this, her tone was on that day quite celebratory, as they had just found out that their insurance approved their son for Spinraza, and he would begin treatment within weeks. I learned from this woman something very important.  "I know this sounds bizarre, but there couldn't be a better time to receive this diagnosis" she told me, "So many people have lived without hope, or waiting for this treatment while their kids died. Rainan has still got a pretty good chance". I found out that, despite the risks, newness and freaky allopathic messianic nature of Spinraza, it has proven thus far to be very effective treatment, and when it does work it stops the progression of the muscle atrophy, and may even help rebuild muscle and return function to patients. Some kids Rainan's age who have been treated are now walking with assistance. Newborns who are treated before wasting develop normally, only perhaps a little slower. If we are going to go through all this turmoil only to decide in the long run to pursue Spinraza treatment, better we learn from all those families who have come before us and just go for it now, while he still has some strength, while he can breathe and eat on his own, when there is still a chance of his recuperating some of his strength and remaining a semi-autonomous member of our family.

But that is still a big, horrific "if" for us. It sort of feels like selling your soul to the devil for mad blues guitar skills. I can still hear that Long Pause for What the Fuck? on the phone saying this to a friend the other night. Let me try to explain:

Being a materialist, in the Gary Snyder sense of the word, means really knowing, valuing, caring for, and preserving the "stuff" of life. We pay attention to what we eat, wear, read, sleep upon, how we travel, entertain, communicate, the raw materials of life and the stories that build things. So just because my only son is facing an internal death threat and a magical treatment is available doesn't ean I can turn off the rational part of my brain that asks- what is the material story of Spinraza? What will Rainan become if given second life with Spinraza? Modern industrial American medical world... SO resource intensive, from precious metals for computer technologies that destroy the earth, uproot indigenous cultures living near their extraction and fuel extreme violence to maintain these mining industries to the untold number of labratory rats and monkeys extensively tested before the human tests of Spinraza began.... we are being offered the opportunity to potentially save and maybe even better the quality of Rainan's life.... at the cost of of the quality of life for humans, whole cultures, animals, rock people, plant people....

The truth is, we as first world peoples make these kinds of decisions everyday. I am typing to you on a computer in hopes that something good can come from sharing my experiences, and all at an enormous cost to the earth and her inhabitants. This philosophy, these realizations, largely fuel many of the decisions we have made as a family in seeking a more simple, bio-regional, harmonious existence. We are no where near guiltless, footprint-free or what the hell ever else one might strive for in being an ecological ascetic. We are messy, real, striving humans trying to live a beautiful life and nourish beauty around us in a world otherwise being ruthlessly degraded. Like Rainan's muscles. Living this way is unbelievably beautiful, adventuresome, interesting, challenging and gratifying. It also requires constant self-scrutiny around what we choose to consume, how we chose to move through this world and what stories we are a part of that lend themselves to the weaving of the larger stories playing out on this earth. Having been raised up in cities ourselves, it is not second-nature for us to live this way. Our values can get mixed up, our creature-comfort desires clash with what we think is right, and then there is the whole murky mucky but highly sustainable Middle Way to try and navigate. This diagnosis brings to the forefront some of the deepest emotional, materialistic, moral and spiritual questions, concerns, fears, and desires a person could imagine. It will change us no matter what we choose, only in staying conscious of our choices we may change without losing sight of our Vision of what a Good Life can be.

The other day we decided to have Rainan vaccinated, despite having put it off until now and wanting to put it off forever, we feel we have got to give him the best chance to fight respiratory infection and body-weakening illness that we can. It was awful, he was scared as soon as he realized where he was, screamed as he never does, sweating and shaking and saying NO with all of his being, and I felt like a creep for forcing him into it, but if I didn't then spinal taps are surely off the table, so in tears we got his first ever, and likely not his last, vaccination. When Alex and I were alone I cried that I wish I could just give Rainan what I know to be Good, breastmilk, good food, clean air, pure water, boundless love and this lifeway.... and Alex pointed out that the root of all these big decisions is, we don't want any of it. No Spinraza, no needles, no vaccinations, no doctors, yes, and no SMA. But here we are. Time to make decisions we don't want to make.

If you made it this far, if you pray, please pray for guidance for our family.

No conclusion to this rant. Only endless vectors of thought and feeling. But Nap Time is almost over and I promised myself to try and not overwhelm, balance the Big Shit with the sweetness of everyday and the sunshine is so sweet on this day...

Letting the Love Shine In

Alex's sister Rachel created a GoFundMe campaign. At first we felt a bit prideful about raising money and bringing more attention to our family at this time, however she is certainly right that there are at present and will be unforeseen expenses beyond Rainan's medical expenses to address. One of the big first lessons we are learning in Tragic Magic School is that people want to help one another. Sometimes it takes something like this to stir up the love, but friends and family long out of reach make themselves available, perfect strangers offer their time and wisdom to help sort out the confusing coordinates of hope, and most people with a little money to spare would love to see their hard earned resources go somewhere besides the mortgage, rent, grocery store and gas.

CureSMA was one of the first websites I ventured deeply into, and they mailed us a bunch of really useful information on SMA, Spinraza and other leading research into the nature of and potenital cure for SMA. They also sent us a big box of toys other families have found to be appropriate for low-tone kids. It was sort of bizarre receiving such a nice thing for such a not-nice thing, but I was deeply moved by the love and support I could feel spring out of this box. I had been looking around lately for an etch-a-sketch or one of those old-school magnetic doodlers for Rainan because he loves drawing but has a really hard time pressing down hard enough with any pen, pencil, market, crayon or pastel to really get into it. Apparently other parents had the same thought, and there was a Play-Mate DoodlePro in there! I am not usually psyched about new bright plasticnesses coming into the home, but this made me feel less alone, more aligned with the other men and women living, loving and working to make this work.

Sitting With The News, and a Series of Fortunate Events

This is Rainan Marrow.

Born October 28th 2015 after a triathlon labor whereby we spent 24 hours at home under the full moon in the wood-fired tub and our yurt, another 12 hours at the Brewster hospital laboring and eventually laboring medicated, and in the last half hour, a c-section decided the exact moment this little fellow would emerge into this world, not exactly through the hole I had hoped but a sort of side door the allopathic coyote of childbirth ushered us through.

Rainan has been a very present person even as an unfurling newborn. That cloudy blue newborn eye colour cleared of clouds but maintained a dark hue- unlike the sky blue of his father and maternal grandfather, they are like ripe saskatoon berries in June. When he engages with someone, he has that uncanny ability of very young people to bring out the best in others, inviting them into his comical, soulful, joyful antics.

 He loves exaggeration, physical comedy, intimate ponderings and long wanderings. He is very musical, loves exploring any instrument you put in front of him and has incredible pitch (which he exercises with everything from song to phone dials, blenders, echoing gunshots, car motors, etc.) He knows books are magic, and loves to singsong incantations divined from those images right back to you. He is a promising hunter-gatherer, recognizing berry bushes from afar and deeply curious about animal slaughter and meat processing.

Rainan was born into an unconventional family and has thus far shown to be game for the life we offer him. In fact we often laugh at how he's so down with the Bigger Vision, he keeps us in line when we get distracted. He thrives out with our horses in the valleys, foothills and mountains of our bio-region hiking, camping, wild harvesting and tending, exploring and connecting with the wilds.

He voraciously communes with animals as we do, learning about them from living being to prone carcass, from fur to marrow, skin to leather, flesh to food. Since the sprouting of his first tooth he has set to chomping the flesh of any and all beasties, drank blood, chomped eyeballs, gnawed bones and slurped marrow.

As we have gotten to know the amazing being manifest in flesh and bone as our son, born of our hopes and dreams, we have shared the feeling of blessedness and certainty that our prayers have been answered, here is a child who can appreciate the life we live, love the earth and all her children deeply, and learn to live in a way that is harmonious, joyful and in right relation.

My name is Epona Rose, and it was through my body that that sneaky secret passageway was sliced to pull through this cosmic creature we took four months to name Rainan Marrow. His papa's name is Alexander. Though from this blog's title anyone happening upon it could venture to guess that the series of events which inspired its creation have not exactly been fortunate, I would like to begin with the fortunate, the blessed, the blissful beginnings:

~a wonderful, beautiful, sexy, magical pregnancy

~the opportunity despite certain medical concerns to labor at home, and give it my all, earning me the grace of meeting the goddess full-on and meeting my most powerful self embodied

~a quiet, warm, peaceful winter with the gentlest, easiest newborn a mama could ask for who developed in good health, latched easily from the first, never lost but 4 ounces in the beginning and gained steadily into a cheeky chunker

~a solid year without any real sickness or worry, until the mantra "he's just a large-headed, chunky, flopsy baby" no longer held at bay concerns about his not crawling, not even bearing weight on his legs, and we finally went to the doctors, beginning the road to diagnoss

  ~and still, grateful for another three months diagnosis-free, one of which we spent as a family in Montana with some of our most beloved friends assisting the wild buffalo hunt, eating really good food, making music, cavorting with sparkledy aunties and uncles, taking long walks in Paradise Valley, all the while both knowing that month to be a blessed limbo between genetic testing and results, blissful ignorance and whatever may lay ahead.

 ~I am so grateful for 15 months with my son before that phone call.

And then last week, the phone call.
So sorry to have to tell you this.
The charge.
Spinal Muscular Atrophy.
And within three months we have gone from being able to hope our baby was just taking his sweet time, to thinking he may not walk but we could manage, to reading on Wikipedia that he could be dead within the year.
The doctors at Seattle Children's Hospital wanted us to drive over there three days after that initial phone call, one day after we had gotten home from Montana, and I told them that if it makes little difference, if he has an incurable, progressive disease, then we could wait another week to come in and needed time to sit with this news.

So this is the Sitting With The News Time.

I know that some of our friends and even family will find out about this through this blog, and I hope you will forgive us if it hurts to learn about this other than from our mouths. Its just that it feels farcical to endure phone call after phone call, albeit with well-intentioned supportive people, because at some point you begin to feel like you are helping everyone else process their emotions instead of processing your own.

Spinal Muscular Atrophy, forevermore referred to as SMA, has an exceptionally bad rap, being the number one genetic killer of children under 2 years of age, presently/legally/officially/popularly incurable, until three months ago officially/legally untreatable, progressive (meaning in the backwards language of modern medicine, ever-worsening) and just unbearably fucking sad to live with disease. Borrowing from an SMA support website:

Spinal Muscular Atrophy (SMA) is one of the neuromuscular diseases. Muscles weaken and waste away (atrophy) due to degeneration of anterior horn cells or motor neurons which are nerve cells in the spinal cord. Normally, these motor neurons relay signals, which they receive from the brain, to the muscle cells. When these neurons fail to function, the muscles deteriorate. SMA effects the voluntary muscles for activities such as crawling, walking, head and neck control and swallowing.

 SMA mainly affects the proximal muscles, or in other words the muscles closest to the trunk of the body. Weakness in the legs is generally greater than weakness in the arms. Some abnormal movements of the tongue, called tongue fasciculation's may be present in patients with Type I and some patients with Type II. The brain and the sensory nerves (that allow us to feel sensations such as touch, temperature, pain etc.) are not affected. Intelligence is normal.  In fact it is often observed that patients with SMA are unusually bright and sociable.

Type 1 Severe Infantile SMA, or Werdnig-Hoffman disease

• Infantile spinal muscular atrophy (Werdnig-Hoffman disease) is the most severe form of SMA. It usually becomes evident in the first six months of life. The child is unable to roll or sit unsupported, and the severe muscle weakness eventually causes feeing and breathing problems. There is a general weakness in the intercostals and accessory respiratory muscles (the muscles situated between the ribs). The chest may appear concave due to the diaphragmatic breathing.  These children usually do not live beyond about 24 months of age.

Type 2 Intermediate type (this does not have a hyperlink so it is spelled out below instead.)

What are the features of intermediate (type 2) SMA?

A child with the intermediate form of SMA often reaches six to twelve months of age, sometimes later, and learns to sit unsupported, before symptoms are noticed. Weakness of the muscles in the legs and trunk develops and this makes it difficult for the child to crawl properly or to walk normally, if at all. Weakness in the muscles of the arms occurs as well although this is not as severe as in the legs. Usually the muscles used in chewing and swallowing are not significantly affected early on. The muscles of the chest wall are affected, causing poor breathing function. Parents notice that the child is "floppy" or limp, the medical term for this being hypotonia.  Tongue fasciculations are less often found in children with Type II but a fine tremor in the outstretched fingers is common. Children with Type II are also diaphragmatic breathers.  Physical growth continues at a normal pace and, most importantly, mental functions is not affected. The children are bright and alert and it is important that they receive all the available opportunities to develop their intellectual capacities to their fullest extent. Integration into a normal school environment gives them the best chance to mature intellectually and emotionally.

The course of the disease is quite variable, and difficult to precisely predict from the start.  Children with the intermediate form of SMA usually sit unsupported. Weakness of the legs and trunk usually, but not always, holds the child back from standing and walking alone. Sometimes the muscle weakness can seem to be non-progressive, but in most cases weakness and disability will increase over many years. Severe illness with prolonged periods of relative immobility, putting on excessive weight or growth spurts may contribute to deterioration in function.  Due to weakness of the muscles supporting the bones of the spinal column, scoliosis (curvature of the spine) often develops in children who are wheelchair bound. If this becomes severe it can cause discomfort and can have a bad influence on breathing function as well. An operation can be done to straighten the spine and prevent further deterioration.  Recurrent chest infections may occur, because of decreased respiratory function and difficulty in coughing. Parents will have been shown how to encourage their child to maintain his/her maximum respiratory function as well as how they can perform postural drainage of the chest. They should start this as the first sign of any chest problem. Antibiotics and inhalation therapy may also be needed. Sometimes hospitalization is required to best manage and care for the child.  The long term outlook depends mainly on the severity of weakness of the muscles of the chest wall and on the development of scoliosis. Lifespan is always difficult to predict. Mildly affected children may live into adult years. The more severely affected children may die, due to pneumonia and other chest problems, before or in their teens.

 

We are the Heathen Family, and we have begun initiation into the Magic of Tragic.