I don’t remember if she listened to music, but surely she must have.
Nancy may not have seen herself as such, but she was the subject of my deep admiration…even envy… throughout our childhood. With her china doll features, porcelain skin, wistful brown eyes, and glorious dark hair that curled softly over her shoulders, she had a sweet pink mystique about her. I loved the anticipation of walking through the “breezeway,” into the kitchen of that house in Missouri, and, after a fleeting glance at the parakeets (I don’t remember, but I am sure that they had names) whose cage was parked atop the chest freezer, I would enter Nancy’s room, and it smelled like roses. When she was not at home, I could sit on her bed, which I found quite special and fancy, and stare at the shelves that held a vast collection of dolls of all sorts. I am pretty sure this was some form of therapy for me, as it filled my nine-year-old soul. I loved pink, I loved lace, and I loved dolls, but somehow it seemed that these things had been claimed first by Nancy, and that my interest in such things was secondary to my love for my cousin, who had no idea how much I cherished her. I told others that my favorite color was purple, because I didn’t want to claim what truly belonged to another. Nancy was also a dancer, something which, though I may have aspired to be, was far beyond the realm of my capability. And I knew it, because someone once told me so. And it was definitely not Nancy, who would not have cared if I sat on her bed when she was in her room.
“Are you still listening to that same thing?”
I was home from college on my semester break, drying my hair in my bedroom, where UB40 was blaring loudly enough to make everyone aware that I was still listening to the same thing. She had also visited the summer before I left for school, and I must have been playing the same songs.
When Sadie arrived from Korea, Nancy, who lived with her young family outside of St. Louis in a house with plush pink carpeting, sent a tiny pink ballerina suit, complete with silk rosebuds and puffy tulle. I knew that she wanted me to know that it was okay to embrace the fanciness, the sweetness, and the balletic sparkliness which was now within my grasp. Sadie never did like dolls, but that did not stop me from initiating at least a small collection. Because you never know who will need to look at them; who will find comfort just in knowing that they are there.
I am not sure when my obsessive tendencies began, but they continue to this day. When a song strikes a chord within me, I need to hear it, and I need to hear it a lot. I once recorded an instrumental song called “Georgetown” from a Brat Pack movie, over and again (which was not an easy feat, or a streamlined one in the days of record players and cassette tapes) until there was no more room on the tape. I would just listen and listen, and I don’t think I wore headphones. These days, it is much easier to hit “repeat” on my music player until I grow weary of hearing the song. I think this habit of mine drove Dan crazy when we first met; though there was great crossover in our musical tastes, I don’t think he cared to hear any song over and again for several days running. And probably he still doesn’t, but he tolerates me on plenty of levels. In my despondent October days at the end of another Cubs season a few years back, I found great peace, if not healing, in Eddie Vedder’s “All the Way.” I listened for a string of days days, until my attention and emotions turned elsewhere, and the playlist, as the time, evolved.
I think this is kind of what happens when you have autism. You need something, because it helps you. You need it over and over, because it calms you, and because it makes you feel alright (that is an Everything but the Girl song, too, by the way). So when Ethan knows the way that he needs to line up his cars, and just exactly how the cardboard has to stand, and how many pieces of wooden train tracks must be on which side of the display, and that there have to be some lentils and rice on the tracks (to look like the stones at the station), he is going to struggle if he can’t, or someone else can’t, make that happen. He is really going to struggle, even make loud noises or become aggressive, if we can’t make it just right. The challenge is in knowing what you need, and in communicating that to those who desperately want to help you. And the greater challenge is in knowing what you need, when really you don’t.
People have asked what they can do to help. And I really, really don’t know. I should know. I should know how to help my little boy, but I don’t. What I do know is that all of the faith, prayers, gestures, thoughts, and positive karma have great meaning. I am on my knees, grateful for all that surrounds me. When I look at the vintage cookie jar, stuffed with the goodness of Grandpa Ken cookies (quickly devoured) that was presented by my sweet friend; when I open the brown box that contained a book that meant a great deal to the giver and just might offer some comfort during these tumultuous and trying days; when I think of how we stuffed our bellies with the taco dinner that arrived from another; when I received the sweet message of helpfulness and hope that came from another; and when I consider that people who are so very busy with their own happenings yet still make time to keep my smallest boy so that I can go to the hospital to visit Ethan; I am reminded how deeply people care, and how blessed we are to be tended with such compassion and care.
If I can connect to a song that truly reflects something that I am feeling or experiencing, if I can just listen, maybe many times, I am going to feel better. If I can drown my senses in the beauty of (even the memory of) Nancy’s bedroom, maybe I can go back to when my days were much simpler, when I didn’t have “real” stuff to worry about.
But now that I do, I will try my best to embrace I want, what I love, and what I need. I will hope that others can do the same. Whatever it takes to get through the journey, to stay on the path, to be open to the music of the moment, is what we need. Just sit with me, and listen to this song. Tomorrow will be here soon.