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
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.
