Updated: Jan 10, 2020
I never much felt like I was made for this world, if I'm being entirely honest. I don't care about the things I'm supposed to care about. I don't want the things I have been taught to want. Instead, I have craved the ineffable—that which can't accurately be defined or expressed. It hasn't made for the straight-line approach to living. It hasn't made for a stellar career track or a killer financial portfolio. It hasn't made for a striking public image. It has made me a seeker in the truest sense of the word. But the thing about seekers is they rarely know what they're looking for. I suppose for many years I believed it was god. And I suppose that I bumped into her a few times along the way. But seekers are never satisfied. And I, true to the type, was seldom content with the glimpses of awe I received.
When I was pregnant with Evelyn, I had my first truly earth-shattering awakening experience. A drop in the bucket of what was to come, but at the time it felt like my soul was being pulled on a stretcher. I sought teachers and healers, anyone who might understand, who might be able to explain what was happening to me. But everyone looked at me like I had three heads. I learned the hard way then that mysticism and religion don't always travel parallel paths. I learned to keep my experiences to myself, to tuck them deep behind my heart where only I could turn them over in the quiet dark, examining their contours. I didn't make the connection at the time, between what was growing inside me on both the physical and spiritual levels. I didn't make the connection until many years later, that her presence, her life blossoming inside my body, had made all the difference.
When she was born, the nurse handed her to me, all bundled up, and told me how cute she was. I remember looking down at her tiny red face and hearing the nurse's words as though they were being strained through a coffee filter. Maybe it was exhaustion or shock, but I felt a vast distance between the bundle in my arms and myself, like she was a doll and not a child, like I needed the nurse to tell me she was mine. That night in our hospital room, Evelyn woke up crying. Alone and desperate for sleep, I pulled her into the bed next to me to nurse. As she lay there, her head next to my heart, a bolt of recognition shot through me suddenly. I knew this child. I knew her. Perhaps I'd known her many times before. The feeling was ancient, like starlight. I had no context for it then, but it was as real to me as she was.
Evelyn was not a typical baby. She rarely cried. She was so quiet I joked that if she were our only child, we would forget we had one at all. But she was pure peace, and she was happy. As she got older, her lack of crying turned into lack of talking. We didn't need words, Ev and I. Which is exactly what I told my mother when she confessed her concerns. But I soon realized that even if Evelyn and I didn't need words to communicate, she would need them to communicate with the rest of the world. She was evaluated at age three and diagnosed at age five: Asperger's Syndrome.
Autism didn't define Evelyn to me. Evelyn was simply Evelyn. Autism was just what made it possible for everyone else to accommodate her. There were times when raising her was a little like raising an extraterrestrial. I had to explain things the rest of us take for granted. I thought I was making sense of the world for her, but I found out that Evelyn had her own way of making sense of things, and it was more novel and refreshing than my own. I had grown up feeling like I was outside of the world looking in. I hid it well, I think. I learned to give people what they expected. Being with Evelyn allowed me to drop the layers of programming I'd been hiding behind. She was, from the moment she came into the world, the most authentic person I have ever met. She was never more or less than completely herself. She was pure.
Evelyn was moved out of special services before she turned ten. By high school, you wouldn't have realized, if you met her face to face, that she'd ever had an autism diagnosis. But you would have realized, beyond a shadow of a doubt, that there was something extraordinary about her.
For someone like myself—a loner, a seeker—becoming a mother made this planet a little less lonely, a little less alien. All of my wonderfully exceptional kids took after me in that they, too, weren't really made to fit the mold. Our house was a bit like a social experiment, all of us trying to figure out how to make it in this strange and demanding place we found ourselves. No one person really having the answers, but each of us believing we could figure it out, we could be okay, now that we had one another. Nathan and I raised our kids with a respect and a trust that was innate. We weren't trying to be any special sort of parent, we just felt a powerful connection to our children and a recognition of their wisdom and maturity from very early on. It was known without being spoken that they were giving us every bit as much as we were giving them.
My children saved me. I was not a happy person before I became a mother. I was lost and I was alone and I was terrified much of the time. I can't explain what being the mother of these incredible people did for my heart. That feeling, that singular experience, is about as ineffable as it gets. I kept on seeking, more out of curiosity than desperation, and my spirit grew as quickly as my kids. We could have marked them side by side on the door frame.
I heard a saying recently from another bereaved mom. I know that god is real because I held her in my arms. Evelyn made me more myself. She gave me the courage to be who I was all along through her example. I have never felt more love, more acceptance, more wholeness, or more joy than when the five of us were all together. When you have that kind of connection to come home to, everything else feels possible.
Losing Evelyn has been so much more than losing a child. I've lost a best friend, a guide, a teacher. I've lost one of the four only people who make me feel safe in the world, one of the four only people who have really seen me as I am and loved me unconditionally for it. I've lost a future and a past. I've lost so many things that I am only just waking up to. Physical presence counts for something. It counts for a lot. Maybe you don't realize that until it's gone. Do I believe I am still a mother to her spirit? I'm trying. I really am. I just know that I am better for having had her, but I'll be damned if I was ready to let her go.
Like me, Evelyn wasn't much made for this world either. But unlike me, that never scarred her. She didn't see her differences as deficits, she saw them as the medicine the rest of us needed precisely when we needed it most. And she was right. When I celebrate Mother's Day this coming Sunday, quietly with my family, with my tears and my broken heart and my pictures of her, I will be celebrating Evelyn. I will be celebrating what being her mother gave to me, including the unbearable sting of her loss. I'm still a seeker at heart, only now I seek the honesty in every moment I share with my children. I seek more of what they give me, and more of what I can give them. And I seek another glimpse of her, my Evelyn, my personal dose of awe.