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.
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.
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