How loss, and joy, can permeate everyday life - Emma Nadler

Grief involves an acceptance that things will not be what we hoped they would be, but also gives a sense of possibility, a connection to what matters. Photo / Getty Images

Emma Nadler is a US-based author, speaker and therapist.

OPINION

The grief of having a child with a rare genetic deletion is intense, but there is happiness, too.

It was a warm summer day, and I was driving with my parents on our way to dinner, when the sadness of a recent difficult moment with my disabled daughter overtook me.

“Sometimes I make up that nearly everyone else I know has a better life … because they have healthy children,” I said as I searched for a parking space. My mother was in the front seat, my dad in the back. I looked in the rearview mirror and saw his heavy eyes. “I know that isn’t true. Obviously, lots of people have problems,” I added. “There’s no shortage of problems in this world.”

Grief brings so much of everything, and the grief of having a child with an incurable condition brings its own specific intensity, including letting go of the life - and future - I thought she would get to have. The life we would have had together.

“You have more pain. But you have joy, too,” my mother said in a soft voice.

“Yeah, that’s right,” I said. I took a breath and nodded. “I do have joy. Maybe more joy than the average person.”

We were headed to dinner before my husband’s jazz show at a cozy club called Berlin, but leaving the house that evening had been a crushing process. My 9-year-old daughter, born with a rare genetic deletion (so rare it has no name) was so worried about how long I’d be gone that she threw up twice. My daughter is dependent on a feeding tube and has severe autism and cognitive delays. Everyday things are terrifying for her, and she cannot communicate in words when she’s overwhelmed.

Our girl can’t participate in most family outings because of her volatility. So she often stays home with a kindhearted caregiver who manages her tube-related needs and talks with her about pop music - my daughter’s favourite thing.

“We get it, Emma,” my dad said. I knew he did.

“We just kept thinking it would get better,” my mum said. The subtext was, of course, that it wasn’t. I felt the sorrow sweep over us.

“I wish I could have savoured what we had - back when the only issues were medical. I mean it wasn’t good - at all - but she was so snuggly and sweet. Without the aggression.” I scanned the block. “Although I thought she was going to die.”

I felt the familiar ache in my stomach. It was always there, but sometimes receded into the background of a day or evening. If I was lucky.

“I know,” my mum said. “Try the alley?”

“There!” I exclaimed. A metered spot only a block away from Berlin. As I pulled up, cars stacked up behind us on the narrow city street.

“Do you want me to get out and wave cars to go around you?” my dad asked.

Grief has been shown to heighten awareness of life’s small details and fleeting moments. Photo / 123rf

I loved how my parents were in this with me. I loved how my father, at age 77, was willing to direct traffic on my behalf. I could feel my mood lift, even though nothing, externally, was different. Yet these humans understood me, and I understood them, too. It was something - a bit of magic in everyday life. Even though it couldn’t cure my girl.

Over the past almost-decade, I have come to understand that grief is a two-headed thing. Or maybe two distinct ends of a spectrum.

On one side is the unending longing that no matter what, things will not be what we hoped they would be. That we have lost something forever. This is the grief that feels, internally, like the flu. Your whole torso hurts. Your legs shake. Nothing tastes good anymore.

On the other side is a sense of possibility, a connection to what matters. Insert whatever your grief happens to be - the specifics vary wildly - yet it connects us to the mysteries of the universe. That none of us are in control. That small stuff is irrelevant. That compassionate humans sometimes show up when we need them (and bring a casserole or a well-timed hug), which helps us understand how to show up for others. That we have more in common than not. And most of all, that love will take us home, wherever home is.

As we settled in at a courtyard table for dinner, the sunlight filtered down and the air was a perfect mid-70s, just like my parents. I felt the beauty all around us.

Grief has heightened my awareness of everything. Who would I be without it? Would I trade away this recognition of the gorgeous luck of being alive if my daughter did not have to suffer? Of course. For that, I would do nearly anything. Anyone who has loved someone who has struggled fiercely knows this. But I didn’t get to make that call. None of us do.

In the landscape of a long-term loss, we lose so much. And, on the good days, we gain, too. Sometimes at the same time. It’s all there - the ache, the wonder, the lingering unanswered questions.

My dad gazed up at the tree canopy above us and smiled.

I smiled back. I had this joy, I had this pain. I had this family, this life, this particular set of problems. I missed the relationship with my daughter that I thought I might have had, but I also had a lovely table on a summer evening with these generous humans who raised me, then stuck by me on an unlikely path.

Even though sometimes I cried publicly (more than I would like to admit). Even though hardly anything turned out to be easy. Except a moment like this.