Night Musings
trepidation of the spheres
The new building at the Los Angeles County Museum of Art is a magnificent, albeit strange concrete edifice with remarkable views of our city, seen through the curtains which are made of sputter plated chrome textiles and they have a metallic sheen but are still so sheer and they cast shimmering shadows on the wall, on a giant Matisse, at the golden hour. They protect the art from the sun’s harsh rays. At night, the city glows through them. The word gossamer. The museum is just around the corner from my house, and I look forward to spending many hours there, hopefully with Sophie because the rooms are large and the hallways wide and there’s a certain gray peace to it all. I have taken Sophie to the Greek and Roman galleries in the old LACMA where everything is hushed and the statues have smooth eyes that have seen centuries. I have taken her to the Met in New York when we lived there, to the Museum of Natural History where we sat, dwarfed, under the blue whale. She was a baby and I was young and everything lay in front of us.
But my skin once soft is now taken by old age, my hair turns white from black. And my heart is weighed down and my knees do not lift, that once were light to dance as fawns. Sappho
How many hours have I spent in this house, wandering around its minute square footage, in and out of Sophie’s bedroom for twenty-five years? Tonight I lay on Sophie’s bed and watched a movie about an octopus while Sophie slept. She sleeps under a drifting whale and now a chandelier made by a Polish folk artist — pajaki — made of paper and straw, pompoms made of colored yarn. I bought it for her at Christmas, and I’ve only now hung it in her room over the small gray recliner in the corner where the nurses sit. I’ve been so down of late for all the reasons that everyone is down, this terrible goddamn country, but I’ve also felt an old fear of inadequacy, of never doing enough, a fear that Sophie’s life is ever smaller but I haven’t the energy to make it bigger. A blanket of fear, smothered. When the movie was over, I left the television on so I could suction Sophie one more time in the blue light and then connect the cool mist machine. She barely stirred even as she coughed up the secretions and I placed the mask over the trach and turned it on. It’s so loud. I hate these machines, these noises, these drugs, these everything. I moved one slim ankle from its perch on top of the other. I covered her with a soft, white blanket. I thought of those curtains at the museum. The word gossamer. Sophie, something fragile and light. I thought of Donne’s not yet a breach, but an expansion/Like gold to airy thinness beat. This world this room. I felt this extraordinary love and it filled the room and for a moment I was filled up too.



You say that Sophie's world is becoming ever smaller and that you don't have the energy to make it larger. Think of this- perhaps Sophie doesn't have the energy to take in a larger world. Also think of the many, many ways you have transcended the difficulties that very few would have even tried to transcend, to make her world a bright and beautiful one. The walks on the beach, the music, the museums...
The gorgeous things you have put in her room to add light and beauty and interest.
Think of the ways Sophie has been able to interact in her own way with her brothers, her caretakers, you and many others. You have made her part of the wider world in a way that very few would have done.
Think of these things and allow yourself grace in knowing you have, and will continue, to love your daughter in all the ways possible. That perhaps an hour sitting in your yard with the shadows and light dancing about her are as important as any trip out into the world could be.
Please don't beat yourself up. Please recognize that you are absolutely the very best mother Sophie could ever have and take peace in that knowledge.
What Mary Moon said. You made me cry because I feel the same way. Do I do enough? Could I do better? I worry about who of us will die first (her please because I can't conceive of her in this world without me, such hubris I know).
Sending hugs and love to you.