Lilly: Teaching, Grieving, and Loving

A student is trying to call me via Facebook Messenger.

I’m sitting opposite my 70-year-old mother at a local cafe, one year into her Alzheimer’s diagnosis. My husband and I are about to enter our second year of caring for mum in our own home, which has been one almighty emotional gut-punch to say the least. Mum and I are sharing a glass of wine, after seeing a matinee movie to mark surviving twelve whole months of living together. I’ve taken a mental health day from teaching, as we’ve been passing like two ships in the night and I want to reassure Mum that I still love her, that I’m still here for her, as we navigate the wild and woolly seas of her dementia.

I glance down at my phone. The student will not stop calling. I know I should answer it, but I don’t want this moment with Mum to end. Today has been a good day. In the trajectory of cognitive decline, this is not always the case. Mum’s good days are no longer outweighing the bad. Her good days are as rare as a winter’s swallow, as this cold-hearted disease slowly swallows her whole.

Today we laughed. Really laughed. Full-belly, multiple-chin laughter. Mum going to the cinema toilet with the door wide open, only to exit with her jeans around her ankles, shuffling bizarrely out of her cubicle and breaking wind with a grand trumpet fanfare, as we both laugh at me frantically trying to pull up her pants before any patrons see our Marx Brother’s buffoonery. Or getting splashed right in our crotches by the explosive restroom tap, as if we’d both pissed our pants with our crazed, wheezy laughter.

Today is a good day. 

My phone vibrates on the table, relentlessly. Mum stares at it with a worrisome look but does not understand that it is my phone. A byproduct of her dementia.

“I’m sorry Mum, but I think I have to answer the call.”

Mum smiles and nods warmly. With her permission, I answer.

It is one of my Year 12 Drama students. He is crying. Panicked. His voice is audibly shaking. He can’t get his words out. He is trying to tell me about one of his peers. His classmate. His friend. He is wailing. I can barely make out what he’s trying to tell me. I ask him to take a deep breath, he gulps the air, but the air releases into a yowl, like a trapped feral animal releasing their deepest pain.

Lilly is dead. She jumped in front of a train.

Lilly is dead. She jumped in front of a train. 

I can’t believe what I’m hearing. The poor student repeats himself out of necessity far too many times.

I thump my chest. Instinctively. Repeatedly. Rhythmically. Ritualistically.

Harder and harder with each beat. I don’t even know I’m doing this.

Tears stream down my cheeks. But my sobs are silent. Trapped inside. I try to release them, but I’m met with a whisper. A whimper. A weak fucking whispered whimper.

I continue beating my chest.

I don’t realise until the next day that I’ve bruised myself, all manner of deep purplish black blasts across my breastbone.

The bruise outstayed its welcome, weeks too long.

It is difficult to explain.

But it goes some small way to spell out my pain.

* * * * * *

My husband picks us up from the café and drives us home. I am mute. Numb. Everything has changed. I know this deep in my bones, but I can’t comprehend the magnitude of what lies before me.

Mum hums happily along to the song on the radio, tapping her leg joyfully in time with the music. It’s Gold FM. Mum’s favourite station. My Girl by The Temptations plays softly. Mum is singing along loudly, having the time of her life.

“Everyone is so quiet! It’s like a funeral here!” Mum laughs wildly at her own joke.

My husband snaps a look in my direction. I am staring dead-ahead. A squinted side-eye is all I can manage.

“Seriously you two! Who died?” Mum laughs uproariously.

I want to scream but I can’t. I am catatonic. Silent tears stream down my face.

Jasper jumps in on my behalf, he is stern and direct.

“Michelle’s student died. Michelle taught Lilly for five years. From when Lilly was in grade 7 right through to grade 12. Lilly was involved in all of Michelle’s Drama productions. Michelle loved Lilly.”

Michelle loved Lilly.

It’s a special kind of grief, living with and caring for your mother with Alzheimer’s. That alone is grief enough. But grief in addition to that, grief you are reminded of and must remind your mother about every few minutes, because she simply can’t keep anything straight in her fragile faulty mind, is cruelty beyond measure.

It is too much to bear. In the 24 hours since Lilly left us, I have had to remind my mother of the incident at least twenty more times.

Each time a fresh thump on my already bruised chest.

* * * * * *

It’s the day after Lilly’s passing. Somehow, I’ve managed to drag myself to school at the recommendation of the psychologists provided by the Department of Education.

When I arrive at the drama room – or the caravan of courage as my students and I affectionately call it because it’s literally two old asbestos-ridden portable buildings stuck together – there are rows and rows of beautiful, bright bunches of flowers lined up outside, with handwritten notes attached.

This sight of beauty stops me in my tracks. It is completely incongruent to the sorrow I feel. I can’t bring myself to read the notes or to enter. A building I used to greet each morning energetically. Joyfully.

I sit outside on the cold metal bench opposite the front door. I sit there for minutes. Hours. Students, colleagues and friends come in and out and sit with me. Hug me. Tell me how sorry they are. I believe them.

Eventually I am joined by my Year 12 Drama class. We sit together, holding each other’s hands in silence. None of us can enter the classroom.

We hear a train passing from the nearby station.

Although none of us witnessed the incident, an unwelcome flashback is conjured by our own gruesome imaginings.

Trains pass on the hour, sometimes twice an hour.

The magnitude of this loss is slowly revealing itself.

I cannot stay at the school I love. After twelve years, my time here is done.

* * * * * *

At the end of the school day, I pack up my desk, load up the car and drive down the highway on autopilot. When I get home, I sit in the driveway, hesitant to enter my own home. At this stage in Mum’s dementia, I never know what I’m going to be met with when I open the front door.

Eventually I muster the courage to go inside and today, mercifully, there are no critical incidents to deal with.

I grunt a ‘hello’ at Mum, who is very happy to see me, dump my belongings in the hallway, refill my water bottle and Frankenstein my way upstairs, followed by my dog Peggy who is mimicking my undead pace. Although I barely look at mum, I can only imagine the look of disappointment on her face that I’m not going to engage with her. I am terrified that I’ll need to re-explain the traumatic events of the past few days, over and over, so I avoid her like the plague.

I feel cruel.

This is not what the first twelve months of caring for Mum looked like. We did so much together. We had so much fun together. We laughed so much together. As Mum can’t hold anything in her crumbling mind, I can only imagine the confusion she must feel at my sudden distance and coldness.

I feel so, so cruel.

I jump into my bed, fully clothed and lie on my side and sob.

Peggy fits perfectly into the nook of my calves. She moves only to lick the tears from my eyes, before nuzzling and spooning right back into me.

This is our daily ritual. Together, we nap. A reset from the pain of the day, so that I can face the uncertainty of Mum’s decline and the thick sludge of grief that I’m slowly moving through on all life-levels.

Change is on the horizon, and while necessary, it’s fucking terrifying.

* * * * * *

“Fight against the Sadness, Artax. Please, you’re letting the sadness of the Swamps get to you. You have to try. You have to care. For me. You’re my friend. I love you.”

Everyone knew that whoever let the sadness overtake him would sink into the swamp. 

Lilly’s last VCE Drama-devised ensemble performance was inspired by The Neverending Story, by Michael Ende. Lilly died two days after her final performance at the Courthouse Arts Theatre. It was a full house. Lilly was the host for the night. She texted me that night, her name saved in my phone as Lilly Pilly, my nickname for her –

“Fitzy, tell me when I need to thank the audience and say goodbye.”

Seven years later, I still have her message saved in my phone.

I did not know the Swamp of Sadness had overtaken her.

I did not know she would sink into the Swamp.

Lilly played Atreyu in the production.

She was brilliant. Fucking brilliant.

* * * * * *

Today I was called into school to see Lilly’s Mum, because I was in her own words – “one of Lilly’s favourite people.”

We hugged and cried together. Sobs from the darkest depths of sorrow. Our bodies made sounds I didn’t even know were possible – guttural growls of grief.

I have never known, nor seen right before my eyes, a sadness or loss greater than a mother who has lost her child.

I am not a mother, though we’ve been trying. Since we’ve taken Mum in, my body is in a constant state of fight, freeze or flight. It is not conducive to fertility.

Lilly’s Mum and I walk the bouquets of flowers from outside the drama room, at least eighty or so of them, to the school’s memorial garden. Back and forth we go, walking in silence. This quiet floral ritual of repetition provides momentary solace.

At the memorial garden Lilly’s Mum says a few words. They are a beautiful blur.

We hug goodbye and I feel like I have no right to cry. Who am I to cry? I haven’t lost my daughter. I’ve lost a student.

But I can’t help it. I don’t know why her mother is showing me such grace and compassion, but I’m so grateful she is. She understood, probably better than anyone, the connection we shared.

Michelle loved Lilly. Lilly loved Michelle. 

I loved Lilly. For years I felt ashamed to admit that, because it felt like misplaced love. Love reserved for the child my body wasn’t allowing me to produce.

Years later, when I have become a mother myself, I look back on this time and I too show myself grace and compassion.

I loved Lilly.

Not like a mother. No, of course not.

But it is a love just the same. Mothering comes in many forms, and I’ve come to realise I mothered long before I ever had my own child – my own mother, my students.

To mother is a verb. An action word.

How lucky am I to have loved and been loved so fiercely, that the loss is felt so deeply?

There have been times when I’ve thought about leaving teaching, because I’m scared of losing another student. The loss is just too profound.

But there is enough love for it all – the pain and the joy.

My heart is big enough to hold it all.

So, I’m still teaching.

I imagine I always will.

* * * * * *

The day Lilly died she tried to find me in my staffroom at school. I was not there, because I’d taken the day off to spend with Mum.

Lilly often tried to find me at school when she was having a tough time. Being on the spectrum, Lilly often had a difficult time at school.

I was not at school when Lilly was having her toughest time. I was not there for Lilly when she needed me the most.

This moment plays over and over in my mind. The guilt consumes me. It threatens to destroy me.

Not until I see the psychologist from the Department of Education regularly do I eventually let this guilt go, but not before sending out my apology into the universe.

I’m sorry I wasn’t there for you, Lilly. 

I am so, so sorry.

I must forgive myself.

Lest the Swamp of Sadness swallow me too.

* * * * * *

A committed group of students and I have decided to put on a show in honour of Lilly to raise money for Headspace. We do it in the school holidays just months after her passing. In just five days, we’re going to put on a devised circus show in her memory. A former Drama student, now a fully qualified Circus Arts graduate and professional performer who tours the world, has returned to school to facilitate the show. We put on a sell-out show. It is incredible. It is a joy.

We dedicate a film we made to her to open the show – it features Lilly in all the Drama productions she ever did from Grades 7-12.

This whole experience is one of the most healing things I’ve ever done.

The students and I raised $2000 for Headspace.

For the first time in months, I feel something akin to hope. Hope and happiness.

* * * * * *

I am on the train coming back to the Lara station from a Drama excursion in Melbourne. I am chaperoning over 60 students. We’ve just seen School of Rock, to celebrate our own successful original production, which wrapped up weeks before.

I am eagerly awaiting a call.

My phone rings. It is the prestigious school I interviewed for the week before. A full time, ongoing Drama position. The facilities are incredible.

I answer the phone.

I’ve got the job.

I squeal with excitement.

We’re in a quiet carriage but it is full, and I can’t contain myself.  I shout to no one in particular – ‘I’ve got the job!’

The whole carriage claps at my news. It feels like a scene from a movie.

I release a breath I didn’t know I was holding onto.

I feel free.

* * * * * *

I have just signed some paperwork and am sitting on the steps of the beautiful administration building of my new school. I am soaking in the glorious view before me and wondering with full joy and hope in my heart what the next chapter will bring.

I can feel it’s going to be special.

I can feel it in my bones.

This new school feels like home.

I walk around the school grounds in awe of the heritage-listed surroundings. That I’ll never have to set foot in my old Drama room brings me such relief. Grief also – but my relief trumps the grief. Grief, relief and a deep level of guilt at leaving my public-system students behind. But my complex post-traumatic stress disorder has ruled my life for the past two years and my nervous system is at capacity.

A month ago, my husband and I transitioned Mum into permanent care. Our limits stretched to breaking point.

Mum is thriving in care. She has a boyfriend. Their public displays of affection have been the subject of many hilariously awkward phone calls from her aged-care facility.

I feel an evenly split mix of relief and grief at Mum no longer living with us. But there’s an internal voice driving me.

I know it’s for the best.

Because the best is yet to come.

* * * * * *

The week I was due with my daughter Thelma, the Lilly Pillies in the garden hedge of our recently purchased yellow brick 1960’s built Geelong home, bore an excess of fruit. So much so, my husband, in an anxious state of waiting and on the precipice of fatherhood, harvested them by hand and soaked hundreds of them in gin. The berries made the gin a beautiful bright pink colour.

Reflecting back, this moment feels significant.

Magical, even.

Healing.

Every year around my daughter’s birthday our hedge bears an abundance of the Lilly Pilly berries. And each year we harvest them for my daughter to joyfully play with in her messy mud kitchen.

This story is dedicated to my Lara Family and Sarah, Lilly’s mother, who gave me her blessing to publish this story:

‘There is no name for a mother who loses a child, and there are no words to describe the pain she endures everyday.’ – Brandy Shillace.

In honour of Lilly and her Mum please visit the Autism Awareness site.