Disenfranchised grief sounds like a financial loss more than the crushing imposed isolation of coping with the death of a loved one without the needed support. It’s been just over three months since my mother passed but it feels as if it’s been only hours or days at times.
Well-intentioned cards, flowers, and messages because words were all we were left with in the midst of a pandemic. Words can’t convey a hug. A text, no matter how eloquent, isn’t the same as holding someone’s hand silently while they cry. Gatherings become dangerous with the threat of a virus yet the lack of those moments were the most painful absence for those of us grieving in isolation. The comfort of affection and the presence of others to honor our grief is essential and without it the pain of mourning is intensified.
The witnesses to this process have been my children and husband. All three are autistic and reading social cues, offering emotional support, and having boundaries around others’ emotions is a lifelong challenge for all of them. What that looks like at moments is me being overwhelmed with sadness and none of them noticing. Crying and having no one to offer comfort except from a distance through the phone. Lost in the depression of mourning and being met with their confusion and irritation that I’m not recognizing that they’re upset by my grief but, on the surface, not her passing.
We read books together about death and grieving after the loss of their cat in March. They were devastated by the loss. I kept the news of my mother’s hospice from them until the final months and dreaded telling them the news of her final passing. They took it in stoically and told me, “Sorry, mama,” and then went about their day. I was shocked but then remembered for many on the spectrum “out of sight, out of mind”. My mother had seen them so little in the final year with the pandemic and the many hospital stays. They resented her absence yet had become accustomed to it all the same. It pained me that so much of her time had been stolen from us by the lockdown and that none of it could have been avoided.
The third week after her death Owen took to repeating to himself aloud, “Right, grandma is dead forever.” Not something you want to unexpectedly hear throughout the day on repeat. I understood this was his way of processing the idea but comprehending this intellectually is a cold comfort when you’re startled by the recitation ad nauseum. No tears, no artwork to commemorate her or their feelings, just life as usual and their bafflement at me being home full-time again not sitting with grandma at the hospital but not functioning in the way they wanted. Why didn’t I want to play a boardgame? Couldn’t we go to the park? What were we doing today?
It was on one of those days in the blur of the past few months of forcing myself to go through the motions of life. I was feeling lonely, angry, and deflated. Life a sad forgotten party balloon withering in a dusty corner of a littered room. Just like the one I was staring at that I had inflated for the kids months before to celebrate one of their birthdays and it somehow managed to survive being stepped on or popped for fun.
“Are you heartwrecked, mama?”
I looked up into his face. Startled by his insight yet grateful for the recognition. Given how much he has struggled in the past and how hard he has worked to identify emotions it was like a burst of fresh air into my gloomy moment. I love how he creates new words and has his own Owen jargon that becomes part of our household vernacular. “Heartwrecked” was noted and catalogued away in my mind with a smile.
I silently opened my arms to welcome his hug. He nestled in and I cried silently while biting my lip. He felt the dampness on his shoulder and looked at my face intently holding it with his hands, “ ‘Love you.”
He looked into my eyes intently and I held his gaze comfortably knowing that this was his way of showing me that he sees me. To some it might look and strike them as odd to be this close to someone and staring so fervently into their eyes but it was an enormous compliment from Owen and he had done this with me, and only me, since he was four. It was rare, lasted no more than a minute, yet it always filled me with bursting pride to know how much he loved me that he would do so for me because he knew it was rare that I was given full eye contact. He noticed how often I attempted to hold his sister’s gaze or his and they strived to offer it as a sign of their affection. It meant so much to me in that moment, on that day, and now so much so that I couldn’t hold back my sobs. He patted me, “I’ll get you a baby wipe.”
I didn’t want them to feel obligated to take care of me. I knew all too well what that felt like to have a parent dependent on you for support at an age far too young. It wasn’t the childhood I wanted for them and I was glad that they didn’t know that feeling of responsibility yet I appreciated the kindness that they began to show me in their own comically unique ways. It was wrong of me not to show my grief to them and I slowly started to open up to them by sharing stories, the happy memories, of my mother and my childhood. Admittedly, there are not as many from my childhood as from my adulthood but I edited out anything upsetting so they could learn about the woman that I laughed with, argued with, loved and missed so dearly.
It’s taken these past months but now if I seem sad, or if I am trying to hide my tears, they jump into action with a routine that they had adapted without prompting or little to no communication between the two of them. One or both would hug me, one would run for a handful of toilet paper or baby wipes (the topic of tissues is for another time), one of them would offer to rub my back or braid my hair, and they would suggest we watch one of “my” shows with them. We began binge watching “Young Sheldon” during those moments and talking more about how it feels to be autistic and laughing at the misunderstanding we all have in life trying to understand each other.
We were watching one of the episodes together, Owen was cuddled up next to me and Leonora was on the other side of him knitting in the dark. He was leaning on me and asked me to pause the show so he could run to the bathroom. He came back and stopped to look at me before returning to his spot, “Does your heart feel sad?”
Most would be amused or surprised by a seven year old checking in with them in such a way but it was a new skill that he had learned and like any new tool that he had acquired he practiced on a timetable that none of us were privy to.
“Not right now but I appreciate you asking.”
He giggled, pleased with himself, and burrowed into the couch beside me while wrapping my arm around himself. We sat that way contentedly. I smiled down at him, “Ready?”
There’s so many stereotypes about autism only seemingly to be outnumbered by those about grief. Yes, they struggle with theory of mind along with reading social cues correctly and navigating the reciprocal exchange of conversation but they are not unfeeling or without compassion as some would assume of them. It hurts them so deeply when they are misunderstood by others or unintentionally misspeak. If only that were true of those that don’t understand grieving.
I will miss my mother the rest of my life. The pain of her loss doesn’t heal or disappear. It becomes part of you. The history, the heartbreak, the mishaps, and the joy. They all fold into you seamlessly like the embrace of the child next to me. She is part of who I am and I will hold onto her memory through the stories that I share with my children and be reminded of her in their love.