Tay Sachs

Today we took a road trip.

Me, Emily and Ronan. Ronan, packed in the back, his small floppy head propped up with stuffed animals and socks, his face reflected in a crooked little mirror, so Emily, his mom, could look into it every so often as she drove in case he had a seizure or stopped breathing.

Tay Sachs has its hold on this little boy. This perfect little boy making cooing noises in the back seat as we marvel at trees and patterns of light and talk about what it means to be happy and how even when you are happy you are still a little bit sad.

Or at least I am.

Our first stop after we left Santa Fe: The Chimayo Sanctuario. It was hot when we stepped out of the car, hotter than it has been back in Santa Fe. Gusts of warm wind blowing my dress around in a way that would normally make me laugh and feel sexy and silly but today I immediately felt tired and I wanted to lie down in the little outdoor church area. Growing up as a Jew, at least until I was 8, I didn’t really know what to call that little area but I knew I wanted to lie my head down on it and rest as the people walked by and snapped pictures or prayed. Some smoked cigarettes which felt somehow unholy given the heat.

Emily had told me as we walked that Chimayo was the meth capital of the world. I watched the smokers in front of us and wondered what meth felt like. I didn’t really want to know but we were in the capital and the heat made me tired and curious.

Emily had said that she loved Chimayo and that they had holy dirt there. She had me at holy dirt.

My hearing has been especially horrendous during this trip. As if there are things here that mustn’t be heard. Things  of loss and heat and dirt and dying babies. Most of the things she tells me during this visit I only half-hear so maybe when she says holy dirt she didn’t say that at all.

But there is holy dirt here indeed!

We entered the church and sat in the back. The art on the walls somehow reminded me of my mother so I kept whispering to Emily My mom would love it here. It was vibrant and colorful, somehow simple in it’s poor beauty, and I knew my mom would love the folk art as Emily did. We traced our fingers over the wood carvings and the blue of the pregnant bellies. There were a few old women up front praying, their mouths repeating the same shapes over and over, and although I know now what they were saying, I knew that they were deep in reverie, deep in connection, somehow sitting on the bench and yet also floating somewhere with a dead relative or baby or Jesus himself. Who knows. They were in a trance but also somehow aware of us as we walked by, enough that they smiled with their eyes and part of their lips without stopping the flow of prayer coming from them. It was like a magic trick. I felt weird to stare but I did, for just a moment. I mean, I went in there to pray in some way I suppose, although I didn’t know it until we walked into the door. I didn’t even know what Chimayo was until we got there. But these women were praying with every ounce of their bodies, like they were born to do this and had waited in a long line of life events that included births and deaths to get here. I was just hoping Ronan wouldn’t suffer and that Emily would be okay. I didn’t even have a real prayer. I just quietly looked over at them and then over to the front of the jaw droppingly gorgeous New Mexican church and sent a wish out to the Jesus statue at the front in whatever language I could muster. I think I put my hands together in prayer like I do when I teach yoga and asked him in sign language Please let Ronan feel nothing. Please let Emily feel something. 

We went to the room where the holy dirt was and it clearly said No Pictures, but, naturally, being me, I took a few. I am like a thief when it comes to inspiration. Whether words or images, if I see it and it touches that place where things are born: I must capture it. I took some photos and then Emily went in and scooped up some holy dirt and put it on Ronan’s sweaty head and his little feet where she had painted his toenails a gold glittery color. I went in and did the same. I also took a little baggy of it and put it in my bag for my sister or anyone else who needed holy dirt. Who knows, maybe I needed it?

We went into the Vigil Shop where they sold popsicles and chile and souvenirs. (They even ship chile! the sign out front boasted.)

We agreed, as we stood under a tree for a moment of relief from the sun, that the land felt different here. I felt much like I do in Ojai, California, where I lead many of my yoga retreats. More connected to the land, more inspired and awake, like there was a current running through me that had been asleep for a while but upon stepping in holy dirt was reignited. Like I became a person again after a longtime of forgetting. Chimayo felt sacred in the way that The Père Lachaise Cemetery in Paris did in July, when I went to see where Jim Morrison was buried, not because I wanted to but because I was dragged. I went with my childhood babysitter who I had been reunited with after her only son was killed in a drunk driving accident at age 19 last August. It was her greatest wish to see Jim Morrison’s grave. I was annoyed at having to go especially because it was half-raining and I was sick and we got lost, but once we got there it was like nothing else. All the tombs like little houses, each different from the next in the most small beautiful ways. I wanted to lie down on them and see what it felt like, not in morbid way, but rather to be connected to such beauty. Rarely has I seen such beauty associated with death. I felt like that in Chimayo. Far from Paris and Jim Morrison’s grave and Ojai but with the vast knowledge that the holy dirt was the same, that if I tasted it in Paris or California, or if I kneeled down in that little room there today in Chimayo that it would all taste the same. That I would be healed or I wouldn’t but it would be the same. That I wasn’t really so far from beauty, wherever I was in the world at any given moment.

We carried on to Taos and I remembered the first time I had been there. Driving across country with my mother, sister and my best friend at the time. I remember eating tuna fish from a can in the back seat and alternating drivers. I remember the colors in New Mexico being so different from what I knew, both growing up both in New Jersey and California. Today in Taos I had a flood of memories, which is good because I am writing a book, but I kept having to shake them off to be present for Ronan. What if this the the last time I see him? 

Emily says maybe it will be. Maybe not. No expectations is what she is working on. No expectations of what his death will be like, whether or not she should travel to Germany for a week in October (because it could as easily happen while she is teaching or at the store), no expectations of what life will be like after.

As we sat in the chapel Emily told me of the pilgrimage people make to come to Chimayo, the last mile or two on their hands and knees so they arrived bloody to the church for their penance. I was in disbelief that people still did this sort of thing but also in awe at the sheer will and belief in what was possible, in miracles and magic and holy dirt.

There were children’s shoes and booties everywhere, left as offerings, which made me feel sad as I sat there with Ronan because he would never wear shoes to walk or run or to look cool for a girl on a first date.

He would never walk or crawl on his hands and knees to make a pilgrimage.

That’s when I decided that I would make one for him. That actually that is what we were doing today out there in the hot New Mexican sun as we walked on bridges and stood in churches and sat in cars.

That here we were eating holy dirt and driving through The Rio Grande Gorge as we listened to bad music through an iPad. That we sang it out loud badly, and it was all for him. It was all so we could keep giving him these particular pieces of ourselves, these grains of holy dirt to take with him wherever it was he was going.

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