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