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....