Published on December 11th, 2019 | by Elizabeth Muller1
When Grief Won’t Fit
When my newborn daughter slept in her crib for the first time, she was steps away, yet it felt like miles. I lay there, unable to sleep, marveling at the fact that this tiny human was dependent on me for survival. Similarly, my well-being was now dependent on hers, her happiness the conduit for mine. I tiptoed through the darkness to place my palm against her chest just to feel it rise and fall. Only after that perfect reassurance could I sleep.
“Please don’t make me come back here ever again,” she whispers. She is a tween now, shoulder to shoulder with me as we leave the children’s hospital. She shares my first name, my nearsightedness, and my love for reading, yet she is in many ways a mystery. I can’t blame her for her request to not return here. I can’t grant it either. She’d spent hours being interrogated by a stranger in a medical setting, a combination of things she hates. But I know that we’ll be back.
When my daughter’s therapist suggested that she might be on the spectrum, I was not surprised. I’d been keeping a list of concerns for months. Avoids making eye contact, dislikes physical touch, resistant to change. Next to this, in parenthesis, “I’ve bought the same pair of shoes three times.” What was surprising was how quickly Ellie’s therapist picked up on it, in just two sessions of fifty minutes each. It had taken me ten years.
As those years passed, each new concern I raised was dismissed as “normal for her age” or “something she’ll grow out of,” like not wanting to greet strangers or having difficulty with decisions. There were times when making a selection at a convenience store could turn into a twenty-minute standoff. Other things, like sleeping with her head at the foot of the bed or wearing sweatshirts in summer, became her “quirks.” She had always been inquisitive and verbal. There were no indications of delays. On the contrary, her teachers praised her as beyond her years.
But certain things tugged at the part of me, as a mother, that could not be reassured: the way she wrung her hands when she was stressed, or peeled the skin around her nail beds until they bled. We established a “calm down” station with blankets and books to help her relax, but there were still times when she insisted, in a tone that broke my heart, “I don’t know how.” One of her greatest fears was loss. She was terrified of losing any of our pets, and even after we installed a fence, begged me to take the dogs out in the backyard on a leash. She was smiling less and crying more. She was slipping away from me, into a place I couldn’t access or understand.
Despite reassurance from teachers and family members that Ellie was a normal pre-teen who was just a little shy, her anxiety took on the portent of an appendix in distress – something ominous that was bound to become dire. She was failing classes, falling out with friends, and most frightening of all, she began ideating suicide. I would often find her listless in her bed, saying that she wished that she could die. The whole world had begun to challenge her: the bus was too loud, the hallways too crowded. She didn’t want to go to dances or parties. Everyone around her seemed like a lit sparkler, and she was an ember barely holding on.
Several weeks after Ellie’s autism diagnostic testing, her father and I returned to the hospital for her results. The specialist agreed that she was indeed on the spectrum, with some behaviors undetectable and others off the charts. The words that followed were clinical in their nature: level one, atypical, Asperger’s, I.E.P. plan, 504. Outside in the hallway, sound machines buzzed in unison to drown out our conversation as nurses hurried by in scrubs. Hand sanitizing stations dotted the walls at regular intervals, serving only as reminders of disease.
Diagnosis: the art or act of identifying a disease, the analysis of the cause or nature of a problem.
“It’s okay for you to grieve her diagnosis,” the specialist said. I felt like I’d been given instructions that I couldn’t follow. I am an easy cry. There are certain Subaru commercials that I simply cannot watch. On the way home from the hospital, I expected the deluge to come, tears that would sputter down my cheeks in little streams. Instead, a strange pressure in my chest distended like a breath that I could not release. I blew the air out of my lungs with the force used to extinguish birthday candles, or when pushing babies from between my legs. Feelings that seemingly did not belong together coursed through me, increasing my confusion, pumping more air into my chest: anxiety, guilt, fear, ambivalence, curiosity, gratitude.
Running became the only way that I could fool my body into exhaling, if only just enough to suck in the next breath. Each night when my husband got home I’d kiss the kids goodbye and run until the pavement turned to dirt, winding through pine forest scored by cricket song. It was the only chance I had to relieve the pressure, but it always came back. I couldn’t run forever. I needed to grieve, like the specialist had said. I imagined that one night I’d reach the end of the dirt road, brace my palms against my knees, and sob. But I didn’t feel grief. If my feelings were a shape, they were a cylinder, and grief a square.
Grief: deep and poignant distress caused by bereavement, a cause of suffering, DISASTER.
In the early summer, a hit and run accident not far from our home left a twelve-year-old boy in critical condition. He was hit by a van when trying to cross the street in the rain. I thought about the boy, the same age as my daughter – his soft body colliding with aluminum and steel and glass. I wondered what his mother must have thought when she found out. I wondered if she had ever placed her hand on his chest to feel it rise and fall. Two days after the accident, the boy died. Grief, I thought, is a feeling for this mother. It is not a feeling for me.
From the time of her diagnosis, my daughter had been discussed in a language used for illness. But none of the words fit the way I felt about the information I’d been given. As someone on the spectrum, Ellie’s mind worked differently than mine. After years of feeling in the dark about those differences, suddenly I had a flashlight and a map. I had a way to reach out through the darkness, not to pull her back, but to run out and meet her there, to see the stars. I couldn’t grieve because what I felt more than anything was relief.
There are things about my daughter for which there are no terms. The sing-song way that she says “thank-you,” her sideways hugs that always take me by surprise, how peaceful it can be to spend time with someone who prefers the quiet. The offbeat rhythm of her feet pounding through her bedroom floor, and the way I feel when I hear it, because I understand now why she needs to dance or pace or stomp in private: the things she does to find a way so she can exhale.
One afternoon, we sat Ellie down to tell her all the things discussed behind closed doors and sound machines. She asked if people would view her differently, and my heart surged because I wanted to protect her, as I always had, from any kind of pain. We told her all that matters is that she doesn’t see herself as any less. “Okay,” she said. “I don’t mind it then.” I shouldn’t have found her strength surprising. After all, she had already come so far, even without a map.
I found a movie about Temple Grandin and watched it by myself one night. At the end, there is a scene where Temple talks about her mother, all the ways that she had pushed her to be her best. There is a close-up of her mother’s eyes. They fill with tears. They speak of resilience, the hard-fought victory of ushering her daughter to a safer shore. They speak of pride for all the things her daughter had accomplished, not because of her help, not in spite of autism, but as a human being, an individual. All the pain, all the possibilities. I inhaled, I let out the breath. Finally, I cried.