After losing our 17 year old daughter, Nora, to cancer, we were faced with a dilemma. Where do we put her remains? Where would we find a space to celebrate her life — a space that could equally the indelible spirit, grace and wit of our girl.

Miraculously, we got a call from Nora’s school — Chicago Waldorf — they were in the midst of planning for a reimagined outdoor space for the school. They wanted to name the space after Nora.

So, in March of 2020, we were planning the live gala that would help raise the funds so work on the park could begin the following spring — just as Nora’s classmates would be graduating from high school. And then the pandemic came and everything and everyone got put on hold. We assumed that work on the park would be delayed indefinitely. And then another call came over the summer.

In the throes of lockdown — in an economic disaster — a handful of Chicago Waldorf families came together to donate over $400,000.00 towards Nora’s Sun and Moon Park. All we need to do is raise $35,000.00 so work can start on the park in 2020. We can do that, right?

Here’s the link to find out more about the park and to donate:

https://www.chicagowaldorf.org/nora

I was asked to deliver a presentation at a symposium on reimagining cemeteries. I told the story of how the vision for this park came to be.

Improvising Through Grief and Memory

Our Nora was sixteen years old when she got diagnosed with stage four cancer. That was in August of 2018. The cancer journey is never easy, but my wife and I have been steeped in improvisation for our entire adult lives. In particular, we had developed programs specifically focused on using improvisational skills as a way to create a more kind and resilient caregiving experience.

We stayed fiercely in the moment; we made the inevitable mistakes work for us; we saw all obstacles as gifts; and we created a highly functioning caregiving ensemble with our nurses and our doctors — extending that ensemble by inviting in every friend and colleague who was willing to share the journey with us.

I have no regrets at how we managed that particular arc. But when Nora passed away just a year later, in August of 2019 — I had no skill set, no schema, no set of principles that I could draw on to manage my grief. In particular, the somber traditional signals of death and its aftermath were of no service to me. We aren’t churchgoers — so that didn’t make sense. And although my parents left us some plots of land in the cemetery where their remains lay today — the thought of leaving Nora’s ashes in such a lifeless and cold spot was never an option.

Stumbling through all of this I found some sense of direction, some fellowship and some guidance in the same place where we had found all the support during the previous year: in community, in connection. I wrote about this dilemma in the same blog I had been writing in every single day since she was first diagnosed.

In our work with the behavioral science community, my wife and I discovered a trove of literature and evidence that when amplified through the lens of improvisation, could give individuals a much greater set of practices that nudged them towards a life with more options, more agency and more depth.

One of the things we learned is how human beings are often reluctant to share details of their own selves — thinking that others would not be interested — when, in fact, the opposite is true.

When I shared the core problem: where do I put Nora now that she is no longer physically in this sphere? A whole world opened up to me:

Artists and architects, fellow travellers upon this terrible journey: all saying that there has to be a better way to represent those whom we love and have lost.

Through these conversations, elements began to appear: she needed to be outside — where she’s touched by the ground and the sky, bounded to the changing weather and the gift of the seasons; she needs to be in a place of movement; she should be able to be remembered in a place where we can share food and drink, where music and art aren’t a nice to have — but are both inevitable and essential.

It isn’t a resting space, it’s a playing space: active and transcendent, just like she was.

Does such a place exist or will we need to build it?

That’s when Mark reached out. Apparently, I wasn’t the only one thinking about how we reframe the way we mourn those we have loved and lost. Soon, my friend Heidi Keibler Stevens asked if she could interview Mark and I about this discussion for the Chicago Tribune. Within days of that article appearing, I received letters and emails from friends and strangers — each with their own ideas on what a reimagined cemetery might look like. A small number of people sent me pictures of the gravestones of their loved ones, suggesting that the current system worked just fine for them.

And then a text came from our friends at Chicago Waldorf — the school that both our kids had attended from early childhood to high school. I immediately sensed something a little magical might be happening when we were asked to come over to the school for a conversation. My instincts were confirmed when we entered the third floor office to see not only renderings of the new outdoor space the school was building, but the seeds of inspiration for that space.

In particular, laying on the desk, was a book.

I should pause to say that one of the outlets for my grieving process has been art: music, poetry, literature — I honestly don’t know how I would have made it through this process without musicians and writers who helped me find another channel for my sorrow. In particular, I got to know the work of Robert Macfarlane — a British writer and academic — who writes about nature, landscapes, people and language.

One of the books that I had been leaning on was called “The Lost Words.” The backstory on this book is important:

When the most recent edition of the Oxford Junior Dictionary was published, readers discovered that forty common words had been dropped. The editors offered that the words were no longer being used enough by children to merit their inclusion in the dictionary. Those lost words included acorn, adder, bluebell, dandelion, fern, heron and more. In response, McFarlane and illustrator Jackie Morris set out to make a spell book that would conjure back twenty of these lost words.

I want to read the first words of the book for you:

“Once upon a time, words began to vanish from the language of children. They disappeared so quietly that at first almost no one noticed — fading away like water on stone. The words were those that children used to name the natural world around them: acorn, adder, bluebell, bramble, conker — gone! Fern, heather, kingfisher, otter, rave, willow, wren — all of them gone! The words were becoming lost: no longer vivid in children’s voices, no longer alive in their stories.

You hold in your hands a spellbook for conjuring back those lost words. To read it you will need to seek, find and speak. It deals in things that are missing and things that are hidden, in absences and appearances. It is told in gold — the gold of the goldfinches that flit through its pages and charms — and it holds not poems but spells of many kinds that might just, by the old, strong magic of being spoken aloud, unfold dreams and songs, and summon lost words back into the mouth and mind’s eye.” (4:59).

This was the book that was laying on the desk in the office at Nora’s school and the chill I felt running through my body was only equaled when Nora’s teachers asked if they could name this new place of play and learning after our daughter.

Nora’s Sun and Moon Park is everything we could have imagined and more. Not only will it contain all the elements we wanted for the memory of our girl, it was her other home.

I realize that the privilege accorded to us is in no way available to others. Too many leave us and there aren’t enough institutions to honor every human we wish to mourn. Which is why it is so fundamentally important that we do the work to find a better way.

We need to reclaim the words of our lost ones and give them expressions in the world we are left in without them. In this way, their memories become un-lost and they are returned to us in every season and every moment when the sun rises and sets and the moon ascends into the evening sky.

And while it’s a popular thought to hold up 2020 as the worst year ever, for my family that’s not the case. We lost our 17 year old daughter, Nora, to cancer in 2019 — she got diagnosed in August of 2018. So 2020 lags in third place for us in the list of worst years ever.

Many months of therapy and a renewed focus on taking care of my own health has helped me get a toe-hold back into the world. I’m still employed and I still love what I do. Our son, a recent college graduate, just moved with his girlfriend into his first Chicago apartment. And tonight, they are having us over for a Rosh Hashanah dinner.

This is where Target comes into the picture.

We wanted to bring some apartment-warming gifts, so I drove over on Saturday morning to our Target to pick some wine, wine glasses and candles.

The sense memories hit me the minute I grabbed the shopping basket. The Halloween decorations and aisles of candy were on full display (though part of me wondered if Halloween is even happening this year). In two months, that same area would be transformed into a Christmas shop with lights and ribbons and stocking-stuffers. I walked by the dressing rooms, where I would wait not very patiently for Nora to try on clothes. I strolled next to the toy aisles and paused. Not only will I never be buying toys for my kids again, I’ll never buy any presents for Nora ever again. I mean, I knew this already from last Christmas — but somehow it hit me all anew.

I found the wine glasses as I slowly and quietly cried. Not huge hulking sobs like the ones that dominated the days, weeks and months after she was gone. It is different now. The tears have become more subdued, but the sting in my heart is still razor sharp and the knock to my soul and spirit remain profoundly thick. I don’t lapse into frequent bouts of melancholy, but I carry a brokenness inside me that is unfixable. I’ve learned to live permanently bedraggled.

It’s odd, this isn’t the first time I’ve been in this Target since Nora died. But I do think I know why it hit me in this new way now. I just stopped seeing my therapist. She was an amazing resource for the first stage of my grief journey, but I knew I was ready for something or someone different. Of course, having Nick move out has made us empty-nesters — another kind of loss, albeit, one that also comes with a sense of parenting done right.

A few days ago, an acquaintance posted this quote from Barbara Kingsolver on Twitter: “Kids don’t stay with you if you do it right. It’s the one job where, the better you are, the more surely you won’t be needed in the long run.” It gave me some sense of solace as how swiftly our son moved out after graduating college. But it also made me think about Nora and how we won’t ever get the chance to see her graduate high school, navigate college and enter those amazingly strange days of early adulthood — hosting your parents for a holiday dinner in your first apartment.

I guess the minefield isn’t Target, it’s all the days in front of us without the people we love the most — that’s the minefield.

What a strange day it was. In many ways… in most ways, the anticipation of the day of the first anniversary of our daughter Nora’s death was far more impactful than the actual day itself. In the weeks leading up to the day, we struggled with the memories and wrestled with the response. And then we woke up on Saturday August 1, 2020.

We planned no grand gestures, choosing to have two of her teachers over for a physically distanced dinner in our garden — all while the lightest of rains fell on us. The hesitant sprinkle of water from the sky could represent a heavenly metaphor. But, really, it was more of an initial threat that turned into a welcome cooling. I guess the metaphor still lands.

And now we’re past this particular marker, waking up in a world in the grip of a lethal pandemic and a cultural and political awakening and coarsening. And she’s still gone forever.

For myself, the only way to make meaning is by practicing and acting, listening and challenging — walking into the world with wisdom unfixed. If I can maintain the health of my body and mind, I can maintain my focus to put other people’s lives and stories at the center. We have a once in a generation opportunity to create change that lifts everyone and not just the few who have used their inherited wealth to create a mosaic of laws and assumptions and institutions and messages that coalesce money and power into far fewer hands. Too many of us — myself included — have allowed this most obvious of lies to go on unchecked, unmasked.

Nora’s life, her strength and love in the face of this horrendous disease, her death — it has profoundly changed the thoughts and habits that had become routine to me.

Hannah Arendt wrote, “Clichés, stock phrases, adherence to conventional, standardized codes of expression and conduct have the socially recognized function of protecting us against reality, that is, against the claim on our thinking attention that all events and facts make by virtue of their existence.” It’s as if we needed to take off the glasses so that we could finally see, never seeing the tint that had been laid into the glass.

I hate that this violence to my family has served to shake me into a new way of approaching the world, but I’d be lying if I didn’t admit the gift I’ve been given. And that’s it, really: if we can begin to accept that our suffering is a gift — just as our joy is — we can make something useful out of all of this ugly mess. And it starts with forgiveness.

Writing in her book “See No Stranger,” Valerie Kaur notes a conversation with her mother who is tending to her mother in law with tender love and devotion as she lay on her deathbed; a woman who, for much of her life, made her daughter in law’s life a miserable one. When Valarie asks how she could forgive her, her mom says, “Forgiveness is for you, not for the person who hurt you.”

Arendt says, “Forgiveness is the key to action and freedom.”

We must forgive ourselves before we forgive others. We have really hard, painful work to do. And we will not succeed if it’s us or them. It’s just us: fallible, imperfect humans who sometimes get sick and sometimes don’t; who are blinded by their privilege or inert within their generational trauma; who can barely make it out of bed some days or who light up the world simply by the fact of their day to day existence.

Nora is gone and I am here. We are here. This is the time to do the hard work.

• Edna St. Vincent Millay

The first. August 1st, 2019. That’s the day we lost our daughter Eleanor Finn Leonard — Nora — after a year-long battle with stage four cancer. She had just turned 17 a few weeks earlier. That was the worst first. It was a trauma that you don’t ever recover from, because it is instantly seared into your bones and your heart and lingers like an itchy ember lit forever deep within you. The first time we left the hospital without her, it felt like an abandonment, a surrender — a surreal drive home through tears and gasps and no understanding of how these firsts would become the way we walked through the world from that night in August to this day — one year later.

All the other firsts followed: my birthday six days later, waking to see the card she made me from a few birthdays ago, still stuck on our refrigerator with an arrow magnet: “Happy Birthday Dad: Sorry, no birthday rap this year.” The previous year she had performed a rap birthday song for me. She was an artist in all the ways. She drew, she sang, she acted. She self taught herself guitar, piano and ukulele.

The first day of school — what would have been her junior year of high school. The first volleyball game I attended to cheer on her teammates. I distinctly remember another parent tapping me on the shoulder to look at the window on the west side of the gym, where a fierce light of orange and yellow and blue was practically yelling through the glass. “Oh, hi Nora,” I said to myself.

The first Halloween, the first Thanksgiving and the first Christmas. Brutal reminders of her absence. An assorted amount of family breakdowns and tears and reckonings with the reality. On Christmas Day of 2019, I kept a small candle burning in the dimpled copper lantern she had made at school and given to us. I don’t remember the year. You don’t note the days and weeks and years when you don’t know you won’t have them anymore.

We decided to escape Chicago for the first New Year — meeting family in her favorite vacation spot in Harbor Country, Michigan. It helped some: being away from the house, our house, her house; away from the closed door to her room which we still have not touched to this day. It helped to be in an unfamiliar house in a familiar part of the world that she found so much little girl and teenage girl joy in. We brought the dog. Her dog: Benchley. During the illness, when we were lucky enough to be home, Benchley would curl up next to her on the couch — giving her a second furry pillow to use or a calming place to slowly pet him with her hand. All of this while fighting the nausea and fatigue that followed her chemotherapy treatments.

Facing the cold of February 2020, we walked into March without any understanding of what would happen next: a global pandemic that produces its own set of firsts and an uprising for racial justice and an end to white supremacy that would leave almost no one untouched, including us.

Within this turmoil, many lovely humans reached out to us to make sure we were okay — given the year where all this suffering took place. I surprised myself with a knee-jerk response, which was: “I’m okay. Frankly, I’ve already been through one of the worst things that can happen to a person and I’m still here. I’m still standing.”

This was in late March and early April. Then a whole new first started descending on us. Sleep was harder; dreams were part nightmare; the days were tougher, for some reason. During therapy I started to figure out why. June, July and August — the final three months of Nora’s life. This was the period of all the final firsts: getting the terrible news of her scans, attempting a hail mary set of treatments, her body slowly beginning to deteriorate, planning and pulling off her 17th birthday on July 10th in the hospital, and then the final days leading to the first. August 1st.

And here it is. The grief and trauma journey is in no way linear but calendars do exist.

This year of firsts was never wanted; it was dreaded; but, alas, there was no way to hide from it. No amount of therapy, exercise or alcohol could protect me from what was the simple fact of my only daughter’s death. My first and only daughter.

So this day, a day that marks the end of the year of firsts, I can note some things that remain true. Sometimes it still doesn’ feel real. I feel like there’s a chance, a tiny window where I wake up and this was all the worst nightmare that a person could ever have. There are days when I’m mostly happy. But there’s not a single day when I don’t think about her. In fact, I regularly think about her throughout the day. Each day.

It is the end of the firsts. But it is the beginning of all the days and nights ahead without her. My sweet girl, I miss you so.

“If you cannot hold me in your arms, then hold my memory in high regard.

And if I cannot be in your life, then at least let me live in your heart.”

• Ranata Suzuki

#TeamNoraForever