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.
