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Navigating Death with Grace with Adam Robarts

Father and architect Adam Robarts shares the intimate story of his son, Haydn, facing a cancer diagnosis at age 19 and the fight for life-saving treatments that were ultimately unsuccessful. Adam describes how his family navigated hospice at home at their family cabin during Haydn’s final weeks of life. As their family faced an enormous loss, they were extremely intentional about how they spent their time and ensured that Haydn had a peaceful exit.




Transcript:

Sarah Cavanaugh:

Hi. I'm Sarah Cavanaugh and this is Peaceful Exit. Every episode we explore death, dying, and grief through stories by authors familiar with the topic. Writers are our translators. They take what is inexpressible, impossible to explain, and they translate it into words on a page. Today we're talking with architect and writer Adam Robarts. Adam was born in London and raised in Uganda and Kenya. He and his wife Karen moved to China in the nineties where they raised their four children, including their son Haydn, who passed away from a brain tumor at just 19 years old. Adam's book 19 is a beautiful book about Haydn, how he lived, about Adam's experience losing a son. Thank you for joining me today.

Adam Robarts:

Thank you. And, it's really an honor to be on your podcast for Peaceful Exit.

Sarah Cavanaugh:

Before we talk about Haydn, I understand your father died before you learned of Haydn's illness. It takes a really unique and conscious individual to be with the dying and I just wanted to hear a little bit about what it was to hospice your own father.

Adam Robarts:

In 2013, February, my father passed away in his very humble home in Kampala, Uganda. My father had pancreatic cancer and he was losing a lot of weight and it was obvious that he was now in that last chapter of his life preparing to graduate from this life. And, thank goodness for morphine to help manage the pain. And, he had a hospice nurse and this nurse would come and administer the morphine and everything else was left to us sitting on the side of dad's bed with him and saying prayers, meditating and reflecting and just being present for him and with him. He didn't say much in those last days but he was still conscious. And, I had the great honor to be with dad as he took his last breaths.

And, interestingly, after dad passed away, I thought, my goodness, now I've got to figure out how we're going to do the burial and how do we wash his body and prepare his body and how do we find a coffin and all these very practical things that I had to figure out. I was a little bit lost in that moment and I noticed on dad's bookshelf a binder that said my graduation and I thought, that's interesting. What's that about? And, I pulled it off his shelf. Literally, this is within hours of dad's passing. I'd never even noticed it on his shelf. And, I opened it up and my goodness, it was his instructions for his burial and thank goodness I found it rather than two or three weeks later when it might have been too late. And, I opened it and it was literally like instructions for the preparation of a party.

Sarah Cavanaugh:

That's fantastic.

Adam Robarts:

He said people should be dancing at my funeral. And, I thought, oh my. How am I going to get people to dance at dad's funeral? And, then there was something he wrote in capital ;letters and underlined it several times. He said, "Africans don't die. They rise to greatness." And, I just thought, dad, you are something else. You know? You just have this complete fearlessness.

Sarah Cavanaugh:

I just love that he had a binder with instructions in it because it's exactly what we talk about in Peaceful Exit is making sure you articulate your wishes so that you who are left behind are not wondering and that if you had dancing at his memorial that you know that he's smiling on the other side. You know?

Adam Robarts:

Yeah.

Sarah Cavanaugh:

That he's happy that you provided exactly what he wanted at the end. And, did this impact how you talked to Haydn about death?

Adam Robarts:

Yes. Yes. Actually, it is interesting that Haydn left a will and this is what it said right at the very top. Live a life filled with joy and try to consciously consider how to bring joy to the lives of those around you as well.

Sarah Cavanaugh:

Wise words. So, tell me a little bit about Haydn.

Adam Robarts:

So, Haydn was one of four children. He was a normally healthy 19 year old with a seemingly bright future ahead of him. He was about to go to University College London to study architecture, which he was greatly looking forward to. And, I was so excited. I always thought, well, one of our children has taken to architecture as a calling. And, all of a sudden, he... In a course of about two weeks, he started to feel progressively worse. He had some nausea and headaches and his eyesight was getting a little bit more blurred. And so, at the advice of my brother, who's an ER doctor in Toronto, Haydn got on the train and went from Ottawa to Toronto where he then had an MRI just to be safe and the MRI of his brain showed a tumor right in the mid-brain next to the pituitary gland. So, this began a nine and a half month journey through cancer that involved brain surgeries and chemotherapy and radiation. And, in March of 2020, Haydn was informed by the doctors that really it was unlikely he would be able to survive.

Sarah Cavanaugh:

When did you start talking to Haydn about the possibility of him not surviving this?

Adam Robarts:

Mm-hmm. So, I think it's really important as parents that we don't leave it to that late and I think talking to Haydn about death from his earliest years... Haydn was 13 when his grandfather passed away and when I came back from dad's funeral in Uganda, I didn't hide anything, so our kids got that from their very earliest age and actually even a few years later, I mentioned in the book sort of almost like in a footnote that Haydn as a young boy in 2008, he buried Zander Ali, our youngest, who never actually lived in this world because he didn't quite make it to full term. And so, we lost a child and we knew he was a boy and we had a name for him and Haydn had a love for his younger brother who he never got to meet, but he decided with Tallis and Sayan that they wanted to help dig the grave that we would bury this little casket. Again, that's a very powerful experience of death as an eight year old.

Sarah Cavanaugh:

It's truly exceptional, I want to say.

Adam Robarts:

Yeah.

Sarah Cavanaugh:

Truly exceptional.

Adam Robarts:

And, visited it. Haydn visited it more than any of the others, more than any of us, and Haydn would plant [inaudible 00:07:32] flowers around this little graveside for Zander Ali, whether it was his grandfather or his younger brother or actually Karen's father as well passed away and Haydn would've been very conscious of that. So, we definitely had with our children, opportunities for them to reflect on death, to talk about death, to come to terms with death, to see it as something that happens to all of us. Nobody gets out of here alive and to realize that actually it's part of our eternal journey.

And so, now we go to the question you asked, which is that, okay, Haydn has been diagnosed with cancer and I think for anybody even hearing the word cancer, hard to completely not associate it with death. There's always that tinge, that sense, oh my goodness, this is cancer and many people do die of cancer. And, of course it would've occurred to Haydn. We didn't even need to raise it. We didn't need to mention it. He knew it. He knew that was a possibility. Whatever was to be the outcome, he accepted it with grace and gratitude and he knew from the very beginning that if he was going to die of this cancer, well, that was one option. And, not that that was his choice. Definitely not. He wanted to live. He wanted to live a long and fantastic life.

And, even when we were presented with this kind of verdict that actually the cancer had spread and that we had come to the end of the curative path, Haydn said, "I wonder if we could look for a clinical trial. Let's see if we have. Let's not leave any stone unturned." He was a 19-year-old. He wasn't giving up. And, we found this extraordinary clinical trial in New York and the percentage survival for the type of tumor that he had was low. It was about 7%. And, Haydn said, "Even if it's 1%, that's better than nothing."

Sarah Cavanaugh:

Yeah.

Adam Robarts:

You know? How extraordinary. He saw it as positive instead of complaining, why is it only 7%? He said, "That's okay. That's... Even if it's 1%, that's better than nothing." So, he was... He was going for it. He wanted to do everything he could and then if the result of that was that the will of God, the nature of what we know of science at this time about these particular kind of tumors means that we don't survive, well, that's the result and we accept it.

Sarah Cavanaugh:

One of the things I love in your book is Haydn's peacemaking, specifically keeping the peace amongst his siblings.

Adam Robarts:

He had a lovely calming presence, Haydn did. I think sometimes these days we often refer to it as a condition of mindfulness, but actually you refer to a vignette, how when we were in Toronto, there was sometimes tensions in the space and at that time we didn't know Haydn was going to pass away. We were absolutely on this journey of chemotherapy and radiation where we fully expected he would be cured. And, then so occasionally there was tension and Haydn would say, "Syan and Keon, why don't you just come into my room for a few minutes?." And, he would close the door and 20 minutes later, the door would open and there'd be a peace treaty in place that they would just have found reconciliation.

Sarah Cavanaugh:

How did you and Karen as parents, as spouses, hold each other up?

Adam Robarts:

Karen and I, parents of these four children in this apartment and parents of Haydn going through his cancer treatments, going back and forth to the hospital all the time, and sometimes as an inpatient we'd be dealing with having to be at the hospital sometimes overnight accompanying Haydn through these difficult nights during chemotherapy and it wasn't easy for us. There were tensions. I think I overstepped my place in trying to get everything right and trying to micromanage and I wish I had done that differently. I wish I had been more able to breathe and accept and be calmer and less controlling as a parent.

Once Karen said to me as I grabbed my backpack full of Haydn's notes and his urinal and the medications and every eventuality that could happen on the journey between our apartment and the hospital, had all the meds and the kit and everything that he might possibly need. And, Karen would say to me, "It looks like you're going to a NASA mission. You're just so prepped and so ready. Just take a breath." And, I'm so grateful that she did that sometimes and Haydn did that sometimes to remind me we have to trust that it's not only my will that is controlling the show, but there is a greater will.

Sarah Cavanaugh:

Do you feel like though, as a father, there's some instinct around protection, around taking care?

Adam Robarts:

Sure. It is and it's healthy, but it can be overly.

Sarah Cavanaugh:

I feel like I need to give you a little grace right here because you're [inaudible 00:12:57]. You're judgemental about it.

Adam Robarts:

No. Thank you. Well, there... I mean, these are some things where I look back and I think, what could I have done differently? And, I describe myself in the book as Haydn's climbing companion in this sort of metaphor of accompanying him up this mountain. And, of course it wasn't just me. We are a climb team and the family were part of the climb team, the doctors, the medics. And, I'm the kind of... I realized on this journey that as a climbing companion, it was my instinct if I could, because of my love for Haydn, if he'd let me, I'd have just picked him up and put him on my shoulders and climbed to the summit.

Sarah Cavanaugh:

That's right.

Adam Robarts:

But, then one has to ask the question. Well, are you letting him become the mountaineer in this journey if actually you just pick him up and carry him? I think you actually can deprive people of journeying their journey, summiting their mountains, and I think it's in my nature to be, maybe because of love, absolutely because of love, wanting to control, to manage, to make sure that Haydn could do this as painlessly as possible, that I sometimes didn't let go and trust that he had this. We had this as a team.

Sarah Cavanaugh:

Haydn's last few weeks were spent with your family in a lakeside cabin north of Ottawa. How was that last week prior to his passing?

Adam Robarts:

To give this context, let's remember, this was 2020. Covid. In New York. Haydn as a patient going into hospitals that were sort of beginning to get their heads around how to deal with Covid and now we had as a family come across the border to have these last weeks with Haydn and there were tests and difficulties and we didn't have the nurses because they were not allowed to come to the home. We were in quarantine and how do we do hospice on Zoom and having to give subcutaneous injections to my son. I really... Whew. Bringing it back now as a memory and as an experience, and I am reminded that Karen had a determination to make whatever time we had beautiful. And, even though this was though, this was a time of COVID raging, she wanted fresh flowers in the room with Haydn. She wanted calm in our room so that there was peacefulness for him and he could rest.

Sarah Cavanaugh:

Did he like music? Did you play any [inaudible 00:15:45]?

Adam Robarts:

He did. He loved music and Karen wanted to make sure that that was possible. So, if the sound of making lunch in the kitchen was pans rattling and she wanted to make sure that we washed up the pans and we made food without making too much noise and trying to make sure that we honored this time with Haydn in that room. And, there was always a chair or two beside the bed so that maybe Keon could sit beside him and massage his feet sometimes for hours at a time. Keon, God bless him, spent hours either just massaging Haydn's feet or saying prayers beside his beds when Haydn was often too weak to speak and sometimes as a family we would gather around.

Sarah Cavanaugh:

Were you all with him in the moment of his death?

Adam Robarts:

In those last few days, we were always present. So, there was always one family member at least beside his bed. Through the night, we would take turns and we had had... We'd had a sort of little bit of a difficult night. Karen and I had tried to get a little bit of sleep. We knew we were very close to the end.

Sarah Cavanaugh:

Yeah.

Adam Robarts:

You can tell that sometimes from the breathing.

Sarah Cavanaugh:

Absolutely.

Adam Robarts:

And, Keon, Haydn's younger brother, took his turn to be by Haydn's bedside so Karen and I could get a coffee. It was close to 9:30 in the morning and Keon said, "Mom and dad, I think you might want to come."

And, we came over and Karen put her hand on Haydn's heart and I held his hand and we stood beside his bed with Keon. Keon actually went and got the other two and Haydn took his last breaths right there in the context of our family home surrounded by us and knowing how much he was loved and out and out and out. Those last three deep out breaths and then his heart stilled and we knew he had moved on to whatever lies beyond that veil, that mysterious afterwards. We gathered and just nobody said anything. We just were present for however many minutes. It was just all of us standing in silence around our beloved Haydn. And, then I gathered the strength to say a prayer for the departed.

Sarah Cavanaugh:

Were you able to take care of his body?

Adam Robarts:

Yes.

Sarah Cavanaugh:

Would you talk about that a little bit?

Adam Robarts:

Sure. This is not something we talk about much in the western world.

Sarah Cavanaugh:

That's right.

Adam Robarts:

In the laws of Bahai burial, there is some... There are a few things that are mentioned, so we tried to honor those. One is that the body should be washed and wrapped if possible in silk. So, Karen had, for example, bought some sponges that were sea sponges, natural sponges so we could each wash a part of his body. So, Keon, who had spent all those hours massaging his older brother's feet, he was in charge of washing Haydn's feet and I washed his chest and in a very sacred and as much a dignified way, respectful way, we prepared his body and then wrapped it in some silk that we had bought, some simple white silk from China. And, Karen had a little bit of attar of rose [inaudible 00:19:25], rosewater that we could then just anoint his body or just [inaudible 00:19:30] beautiful fragrance of rose in the room.

And so, here we were. Because of Covid, the funeral home... We had arranged with them that they would bring the coffin to us and as we took the coffin out of the house, we sang the high prayer. And then, my goodness, we weren't expecting it in the garden, keeping a social distancing that was possible. All these people were gathered. My goodness. There were friends who had heard that Haydn had passed and they wanted to come and pay their respects. So yeah, those were very, very special moments as a family to still be with Haydn to honor him, to feel his presence.

Sarah Cavanaugh:

Absolutely.

Adam Robarts:

And, in no way was this the end. I think this is something really important. I think when we see death as the end, it can really grip us with fear, paralyze us, and actually prevent us from appreciating that sacred time that we are in and that sacred space. The closest we have, I think is birthing. 20 years earlier I had been at Haydn's birth. I watched him come from that world of the womb into this world. It was kind of like I was attending. I was waiting at the arrival gate to see my beloved son being born and I was just aghast. I was... Even though I'd watched this once before with his older brother, I just felt awestruck at the extraordinariness of this process as a father attending the birth of his son. And, here I was now 20 years later, not at the arrivals gate, but at the departure gate, saying goodbye to him. And, as my wife Karyn often says, it wasn't that he was going. He was just going ahead.

Sarah Cavanaugh:

It's been just over two years since Haydn's graduation. How would you say your relationship with him has evolved?

Adam Robarts:

First of all, I miss him terribly. It would be naive and inaccurate to say otherwise. I miss hugging him in the mornings. I miss being able to talk to him about architecture. I miss his wisdom in our family consultations.

Sarah Cavanaugh:

His peacemaking.

Adam Robarts:

And, his peacemaking for sure. You know? What a gift he was to our family. I do miss him terribly and grieving is real and I have been grieving for sure. We all have as a family, all of us in our own ways. And, I have felt the pain of losing him.

Sarah Cavanaugh:

What an incredible journey for you and your family and as challenging and painful as it was, you were all, especially Haydn, very thoughtful in how you approached it.

Adam Robarts:

We had prepared ourselves. We knew what was going to happen. I think Sarah, you mentioned earlier about with peaceful exiting, it is greatly helpful to a family especially to prepare, to write a will, to reflect on what we wish when we take those last moments, what we want to have as the context and what we want to have in the moments and hours and days afterwards, how we want our funerals to be. If we can be quite specific about that, it's a tremendous gift to our families because then we are not suddenly caught both grieving and needing to prepare for something as momentous as a funeral and gathering family and friends.

And, try doing funerals during Covid. That's not easy and restrictions that there were on number of attendees. And so, we had actually thought through all of those things before and in that last week, Karyn described once how she was ironing our clothes for the funeral while other parents were preparing their 19 year olds for university and getting clothes and sheets ready for their bedsets in university accommodation and here she was ironing clothes for our funeral for Haydn's funeral. It was very surreal, but actually very special that we had that chance to prepare. So, just conscious.

Sarah Cavanaugh:

Thank you for the gift of your time and your story. I certainly hope people will read your book. It's really beautiful.

Adam Robarts:

Thank you.

Sarah Cavanaugh:

Thank you for listening to Peaceful Exit. You can learn more about this podcast and my online course at my website, peacefulexit.net. If you enjoyed this episode, please let us know. You can rate and review this show on Spotify and Apple Podcasts. This episode was produced by Larj Media. You can find them at larjmedia.com. Special thanks to Ricardo Russell for the original music throughout this podcast. More of his music can be found on Bandcamp. As always, thanks for listening. I'm Sarah Cavanaugh and this is Peaceful Exit.




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