Can joy outlast all the sad experiences of one’s life, even when your precious only child has lost his life to cancer? Diane Nares is the author of a powerful and touching memoir titled His Place At The Table: A Personal, Public, and Spiritual Love Story, about her son Emilio’s cancer diagnosis at three years old, the rollercoaster ride Diane and her husband Richard traveled in the attempt to save Emilio’s life, and how the unwavering love and commitment to each other that Diane and Richard shared, and their spiritual strength, became their lifeline. Tune in for this incredibly inspiring interview, and find out how Diane and Richard are now helping other families through their Emilio Nares Foundation, the lasting impact of their son Emilio’s legacy, and so much more!
IN THIS EPISODE, YOU’LL HEAR ABOUT THINGS LIKE:- The spiritual paths Diane and Richard melded together, that helped them get through their tragedy.
- Emilio’s heartbreaking journey through childhood cancer.
- Diane and Richard’s profound experience witnessing Emilio’s soul leave his body.
- It is important for bereaved people to give themselves permission to take necessary time for themselves.
- Grief can show up no matter how much time has passed.
- How did your spirituality become your lifeline when you found out Emilio had leukemia?
- What was it like to experience Emilio’s soul leaving his body, and how did you know that he will always be with you?
- What are the healing tools that got you through each day to the other side of grief?
- What are some of the important lessons Emilio taught you?
- How did the Emilio Nares Foundation help you and Richard heal and transform your lives?
- How can healing switch the ratio of grief vs. joy?
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Watch the episode here
Listen to the podcast here
Diane Nares: Can Joy Outlast All the Sad Experiences of One’s Life, Even When Your Precious Only Child Has Lost His Life to Cancer?
I could not be more delighted to have the pleasure of interviewing Diane Nares, who will be speaking to us from San Diego, California. Diane is the author of a new powerful and touching memoir titled His Place At The Table: A Personal, Public, And Spiritual Love Story about her son Emilio’s cancer diagnosis at three years old, the rollercoaster ride. Diane and her husband Richard traveled in an attempt to save Emilio’s life and how the unwavering love and commitment to each other that Diane and her husband Richard shared and their spiritual strength became their lifeline. After Diane’s parents told her that she would have to leave her private Catholic high school and attend a local high school because they could no longer afford the tuition, Diane became a waitress, and that job provided her the means to not only pay her tuition, but attend a university, obtain a college degree, and travel to Europe three different times in her twenties. She eventually entered a management program with a corporate restaurant group and spent the following ten years in restaurant management. However, she realized that she would probably not ever find a life partner and become a mother if she remained in that business working evenings, weekends, and holidays. Diane then segued into a lovely career with the international wine industry, which 30 years later provided her with the opportunity to retire and write his place at the table. I’m looking forward to talking with Diane, who is an advocate for childhood cancer awareness and the CoFounder of the Emilio Nares Foundation, about the unwavering love and commitment to each other that she and her husband, Richard, shared how spirituality became their lifeline when they found out that Emilio had cancer. The rollercoaster ride, Diane and her husband, Richard, traveled in the attempt to save Emilio’s life, the healing tools that got Diane through each day, and to the other side of grief, the creation of the Emilio Nares Foundation, and so much more for what is surely going to be an incredibly moving interview with a truly inspiring woman. Diane, a warm, heartfelt welcome to the show.
Thank you so much. It’s such an honor to be here with you in conversation, and I appreciate the words that you said. Thank you. I like to let people know who you are because it adds weight and it adds significance to whatever you’re going to share with us. We all love a great love story, so let’s share that first. Please describe how you and Richard met, the unwavering love and commitment to each other that you shared, and the spiritual path that you melted together. It’s such a beautiful story. I was in my 20s and 30s, single and very career-driven, landing in the restaurant industry and then in the wine industry. It was a big job, and it went day into evening and weekends. Even though I escaped that from the restaurant business, even the wine industry did. I had put on a back burner the thought of finding a partner, marriage, having a child and/or family. It wasn’t that important to me. That came from the fact that I was the oldest of six children. My mother had each one of her children within nine years. Busy lady. When it was happening and I was a little girl and the oldest, I wasn’t so thrilled. I was like, “Another baby. The babies just kept on coming.” I didn’t have my mom’s attention. I grew to understand why and what that must have been like for her. It wasn’t what she had aspired for her life as an immigrant from Italy, landing in New York, wanting to be a diplomat and World War II going on, and she had big dreams for herself. Eventually, she met my father, and it was a beautiful love story. She loved all of us. She was doing the best that she could.
I didn’t aspire to do that. I wasn’t that little girl dreaming of her wedding. It was my late 30s, right about 38 years old, when I went, “Oh my God.” There are some wonderful cartoons out there in the world. I can’t remember where it’s from, but a woman was going, “I forgot to have children.” That was so much my life. I was definitely getting all those feelings of despair that, “I don’t have a partner. I don’t think I want to do this on my own.” It’s probably hard also because you had siblings who were married and they probably had kids, and here you’re the oldest. Definitely, all five of my siblings were married and having children. It was wonderful to be an auntie and to have all these great nieces and nephews. As I aged, then I was becoming sad. There’s a story in my book about my youngest brother’s wedding and my sister finding me in the bathroom on the floor crying out of despair, all the reality of being alone and not having that life that looks so beautiful now to me. A very kind friend held me and said, “At the moment when you’re ready, you will find that partner.” She knew. That event was the one that got me going, “As hard as I’ve worked on my professional and educational life, I have to work that hard. I’m finding a partner.” This was before the internet and all the groups we could join to meet someone.
It wasn’t any of that. It stayed amongst friends, but I was taking care of myself. I wanted to be the best person I could be on my own and draw the right person to me. Sure enough, when I had turned 40, a friend of mine owned a restaurant and I was with a group of friends there. Richard and his friends were sitting in the bar inside. Richard said to my girlfriend, “Who is that?” It was like that. I was pretty nervous. I’m like, “Another handsome man in there and charming.” It’s always great when they see you first. That’s what happened. My friend lured me inside to be introduced to Richard. As you did, for the two of us, we knew immediately that we were destined to be together. There was something. We were looking inside one another’s soul, going, “This is it. This is what this whole journey here has been about.” That was pretty fast. He was a big gun shy for 1 month or 2, but then we both knew. A big draw to that was each of us individually, since our twenties, had been on a spiritual search to find our own place in the world. He in San Francisco and me in Southern California. I’m from Los Angeles. We were finding that on our own apart from one another it was quite the break from the Catholic upbringing that we had our entire life. You had that in common also. You merged your spirituality with each other with the different things you were doing, meditation and whatever you were doing in the spiritual world. Now the two of you get married and you give birth to this magical little guy, Emilio, and you’re 42 years old. Would you like to tell us about your precious Emilio? Share how he inspires you and Richard every day and describe his heartbreaking journey through childhood leukemia. We had that chance. One of the questions I asked Richard, when we knew that we were going to marry one another, I said, “I’m over 40 now and I’d like to think I could have a child if I could.” I didn’t know what he was going to say. His response was, “Then let’s have a baby,” so we did. We had Emilio. When you’re in your early 40s, you just know that all of the achievements and experiences of life were wonderful, but nothing prepared me for how I would feel with my little boy, with my baby, my one and only. No achievement or experience could prepare me for the profound love I felt for my child. Share on X It’s falling in love in a whole different way. I can relate. You know this to be true, so many people do, but it’s funny, I had all these brothers and sisters and nobody was just telling me the wonderment of it. They were completely in love with their children. I think it’s such a personal thing to experience it. For me, it was so personal and for Richard as well. He was the most amazing father, the sensitive, sweet soul he is and completely in love with this child because this was our only and first. I had no idea of the spirit that was within him, that he was so soft, gentle and sweet, yet so incredibly smart and wise beyond his years as he started to move from being a baby into toddler years to three years old, the things that he would talk about, the questions that he would ask of us are deeply sensitive and very focused.
We even had some experiences. I didn’t even write this experience in the book because I didn’t write it, but I am now talking about it. I swear, when he was four months old, he was in his car seat in the back seat. We were starting to take off and drive. Richard was fussing with him because Richard was like a second mother. He was probably more protective than even I was overprotective of him. He was fussing with his car seat. Emilio out came to this voice four months old, “I don’t like that.” I’m telling you and our readers for the first time. That was it, then he sunk back into his little seat and let his dad fuss. Richard looked at me and I looked at him, and I was driving. “Where did that come from?” “Did we really hear that?” That was the first thing in the first of several where we realized, “I don’t know. I heard it. You heard it. It happened. It must have happened.” We never told anyone because we didn’t want anybody to think, “It couldn’t have happened.” It’s an example of that old soul and that spirit. It sounds like he was a very old soul. He came with a lot of wisdom. He’s three years old and how’d you find out that he had leukemia? What happened there? The first three years were incredible and magical. What happened was right around his third birthday, he had started preschool and he was getting cold regularly. Everybody was saying, “Don’t worry. It’s preschool. That’s a germ fest in a preschool for kids. They’re just giving it back and forth to one another. Don’t worry about it too much.” That was all our friends and family. We were like, “Okay.” We’d keep him home, and then he’d be okay and we’d send him back to school, pick him up early and whatever, but he’d just had this incessant cold.
Over a period of 30 days, a fever developed. In Tylenol, fevers are 24 or 48 hours and then they go away, but this fever didn’t go away and it lasted for seven days. We were concerned at this point. We went to our pediatrician. He was like, “This is several days, but I’ve been seeing this. There are different viruses going around. Keep in touch with me rapidly.” We did that. Within 1 day or 2, then the red flags came up and Emilio was bruising.
He had bruises on his legs and his arms. There was something there, whether it was anemia, we didn’t know. We took him in for a blood test and within 24 hours, the results came back that they saw leukemia cells and suspicious cells, and more blood tests were done. Emilio, at three years old, was diagnosed with acute lymphoblastic leukemia, the most common form of childhood cancer. This was back in 1998, the success rate was about 75%, and the children don’t relapse, and then they get through a two-and-a-half-year treatment. We just dived into that horrifically painful time. You’re horrified, but you’re hopeful. Horrified but definitely hopeful. There are lots of reasons to be hopeful. We existed within that.
How did your spirituality become your lifeline when you found out that he had leukemia? Both Richard and I, in our journey separately and then together, had evolved into what we call East meets West. Definitely geared in our Western religion of Jesus in life and all that Jesus did, but we resonated fully when we each individually and then together embraced Eastern philosophy. We grew into practicing meditation practice daily or a couple of times a day, I definitely had always been in yoga practice, but on the more spiritual side of yoga. I know that Emilio went into remission, and you return to work and you have an excerpt from your book that you would like to read to everybody about that experience. I would love that. Would you like to do that? Absolutely. It took only one month for Emelio to go into remission. Once remission happens, everyone was telling us from psychologists to social workers, to all of our doctors and nurses, “This is a great thing. We just need to keep him in remission. There’ll be a rollercoaster ride of chemo and treatment for sure for two and a half years, but it’s all about staying in remission.”
When that time came, I had gone back to work just recently, and the first thing that my boss told me was, “We are planning a trip to Tuscany to go visit our wineries and to meet a new family whose wine will be representing, and you’ll be selling in Southern California. What do you think?” I said, “I want to go. Emilio is in remission. It’s important for me to go. Let me talk to Richard about it.” Richard encouraged me to do so. I’m going to read an excerpt here and then fast-forward it to the place when I return.
“Richard and I made the decision that I would go to Italy. It was a ten-day visit to the regions of Tuscany and Piedmont. The agenda included a visit to several different wineries, and work trips such as this included time spent with families who own some of the most prestigious wineries in Italy. I worked for a national company comprising sales and marketing people from around the US. My colleagues became close friends, and we traveled together yearly, relishing opportunities similar to this upcoming trip. The company I worked for from 1993 to 2002 was based in Chicago with a team of many sales reps, managers, VPs and we all met at JFK airport in New York for our connecting flight to Milan.”
“The trip goes on to talk about the beauty of being back in Italy, which I love so very much and have been so many times, but also being with colleagues and friends again and how powerful and wonderful it was. I’m going to just take it to the point with, after the whirlwind days had finished, we caught an early morning train to Milan for our flight back to New York, where I would catch a connecting flight home to San Diego.
By the time I could phone Richard from New York, he had taken Emilio on a routine weekly clinic appointment earlier that morning. That appointment included Emilio’s monthly bone marrow aspiration. Every other month, he had to have this to check his cellular activity. We had been through this particular test for well over a year by now, but nevertheless, we were always nervous at that particular appointment.”
“I felt bad for Richard that he would have to go alone without me by his side, but neither my flight home nor this appointment could be changed. Emelio would be under full anesthesia for this procedure and wake up cranky and starving, but always with a clean scan. While waiting for my flight home from a phone booth at JFK, a phone booth way back then, I heard Richard’s voice crack as he struggled to get the crippling words out of his mouth. Finally, managing to do so. He said, “Dr. Sudari is concerned about some suspicious cells that he found this morning in Emilio’s bone marrow scan.”
“My only memory of the moments that followed our conversation was when I heard the boarding call from my flight. As I stood up, my legs buckled under me. I struggled to control my breathing. With my trembling words, I managed to tell Richard that I had to board my flight and that I would see him and Emilio in six hours. As I hung up the phone, all I could feel was that paralyzing familiar fear that it had become such an unwelcome part of my life. I sunk deep into my assigned seat, put on my eye mask, and cried all the way home from New York to San Diego.” It’s heartbreaking. It’s so hard. I’m going to fast-forward with you because when Emilio did pass, how long after this did Emilio transition? How long was he sick after this? This was his relapse. If I may lead into the thought that the relapse was one billion times harder than the diagnoses. That’s how frightening the relapse was because with the diagnoses, there was a high success rate, but with a relapse, there was nothing that they could do. The only thing that can be done is a bone marrow transplant.
The very best donor match is a sibling. He didn’t have a sibling. The only choice we had was to go on to the national and international bone marrow registries that exist and we’d have to find a match that was about as good a match as you could get a six out of six antigen cellular match and have an unrelated donor transplant as soon as possible. That was it to save his life. There was nothing else. We searched the registry for two years and we never found a match. In the meantime, all that could be done was intensive chemotherapy. How heartbreaking. The important part of this piece, as I say this, it sounds so devastating that for two years with nothing that could be done, “Why did we let him live? Why didn’t we let him go?” It wasn’t like that. We were in the midst of having become childhood cancer advocates for one thing. It wasn’t just our story. We were all about the families. We met all the children. We met all the disadvantages that other people had and that we did not have. We were in the thick and we were constantly researching and asking questions.
We knew people working on clinical trials. There were improved medicines and chemos just right out there in the universe, not quite all there yet, but on its way. We were of the thought process of, “Something’s going to happen here. We could do something here.” Meanwhile, Emelio was getting back in remission, and he did get back into remission for that for a year. Meanwhile, we kept looking and searching because new people were joining the registry every day. In fact, our story is responsible for having the very largest trans bone marrow gathering for people to donate bone marrow. It’s like a database of bone marrow. We had the very largest one San Diego had ever seen by the Padres, our baseball team. The whole thing was amazing what was going on. We were looking all over the world as to how to save Emilio’s life. Moving forward, we found through a friend who had researched this that a pediatric oncologist, scientist, and specialist in Boston was at the Dana-Farber Cancer Institute in Boston Children’s Hospital. She was doing a special bone marrow transplant for children who couldn’t find donors. Everything is high risk, but this was a phase two study. She had a 50% success rate of the children that she had transplanted this way. It was called a haploidentical transplant, with one of the parents as the donor. Each parent for their children brings just three antigens to the plate.
This was a transplant that was very new, knew, but there were children succeeding, so we took the quickest flight we could. I always say that we took the quickest flight we could to meet this brilliant doctor, and we felt that if we didn’t try this, we could never live with ourselves. I think our marriage stayed together because of many mutual decisions, but this was the primary one, Emilio’s care in a situation like this and we both knew we had to go, we had to take him there, and we did. Did he transition at that time or after that? What had happened was Richard was his donor and Emilio’s white blood cells were beginning to grow. Richard’s blood type was transferring over to Emilio, an O positive from an A positive blood. He was in the bone marrow transplant unit there for two months. I can’t even imagine what it was like for your son going through that, watching your child be a human pink cushion. That’s what it was. In fact, from the very beginning, I wished that we could have packed our bags and gone home. You can’t. We were in it. We were in a transplant. We couldn’t do it. Trying to comfort him. 
It was devastating. To weeks before he passed away, his breathing was becoming belabored. There were other organs that were starting to get in trouble, and they had to induce a coma, as it was explained to us. It’s an induced coma. He got him out of the bone marrow transplant unit and got him into the ICU, where he was in a coma for two weeks, but he was still squeezing our hands. Our doctors, the best of the best in Boston, were saying to us, “He squeezed your hands, and that’s a good thing. He can hear you coming into the room.” That’s where the three of us were for two weeks, and then we got a call.
We had been living at the Ronald McDonald House in Brookline. We had moved ourselves a couple of days before Emilio’s transition into the Best Western Hotel on the hospital property just to be there because the Ronald McDonald House was a one-mile hike away. We got a call at about 3:00 in the morning there in the hotel to come back as soon as we could. They felt Emelio was becoming compromised in a different way. How heartbreaking. Didn’t you experience his soul leaving his body? I remember reading a book that you knew that he would always be with you. Please share that. Absolutely. I have it in my book, but I made some notes on it to brief it and condense it into the topic of how we experienced Emilio’s soul leaving his body. In a small corner of a private ICU room, the three of us lying in Emilio’s bed together. Since entering his room in the early hours of the morning, we just crawled into bed with Emilio. He still had all of his tubes hooked up. Our doctor and the precious nun who was with us the whole time, Sister Carlotta, who is still in our lives and was by our bedside. Our doctor explained to us that his organs had gotten in trouble and we had to let him go.
We said, “We know we have to let him go.” They said, “When you decide it’s the right time, you just tell us and we’ll unplug his tubes and you’ll light with Emilio. For several hours, he’ll breathe on his own.” When we decided that it was time, the ICU nurses unplugged Emilio’s tubes. He laid across our lap for the following seven hours, breathing on his own with us until it was clear to us that he was about to breathe his last breath.
In that exact moment, an intense, extraordinary power entered the room. The light was abundant, and it was clearly spirit. We knew that Emilio’s soul was transitioning from his body at that moment. We felt this power, and we saw the light. It went straight up and outward in front of us. Emilio was gone. His limp body remained a mere shell of who he was. It was just his shell. You had that experience, so in that way, he told you he was gone physically. That’s exactly what we knew. I remember feeling at first a sense of enlightenment, an understanding of sorts. Deep spiritual assistance was in the room with us that afternoon. However, as you know from your story, in a very short time, grief barreled in as you did as you sat in front of all that business of Souths. Grief barreled in, stomping all over us as the two of us tried to stand up, only to lose our legs. We knew that feeling paralyzed with shock and fear then we went from there, but we knew it was the truth, but we’re human. The shock was unbearable. I see reliving it is so hard, but what did you do to start to heal and to move through it? You have to honor where you’re at, but there are things that we all can start to do, give ourselves the time for ourselves and do what we need to do to contribute to our healing process. Were you aware consciously right away that we have to do these things or was it organic that you started to do these things to help yourself? The process was certainly getting Emilio’s body on a plane back to San Diego. My brother and his wife live in Connecticut, and they would come up every weekend with us. They were there. Briefly, we had to get on an airplane as soon as possible to meet that plane and be home. It was terrifying. Everything about it was just shocking and horrifying, but with my brother and sister-in-law’s help, they packed us up from the Ronald McDonald house, got us on a plane, got a flight, and the whole thing.
For the first 24 hours, we didn’t want to live. I share that because that’s how unbearable grief is. Emilio’s dog was with us. She’d been cared for while we were gone. Emilio’s dog that first morning, we were waiting for him to come down the hallway. We always heard his footsteps, but we got some sleep. We awoke to Sierra saying, “I’ve got to go outside.” That shifted gears on everything. We were still incredibly filled with sorrow, but we had to get up and we had to get out of bed. We took her out. We took her for a walk, and then we went back in and back into bed. At the same point, this is all about time. It shifts and changes constantly. Emilio passed away 24 years ago, and I share memories in my book of years 15, 17 or 20 of grief reentering my life.
The healing tools came from just having one another to start within the same place. Although different, I needed to talk about it. I got into some mom’s grief workshops right away. Neither of us could go back to the hospital at that point, but a bereavement counselor came to me, a hospital bereavement counselor in pediatric oncology came to our home and Richard had different ways of grieving than I did. We’re very different. He’s a much more private, quiet person, but our spiritual connection to God surrounding us always was crucially important. We just asked for a lot of help and got a lot of help. You talk about in the book about the many lessons that Emilio taught you. I’m sure that as the years went on, you started realizing more and more about how perhaps he came into your lives with the intention of teaching these lessons because you are now sharing them with other people. Would you tell us some of that? From losing Emilio, I absolutely transformed into another life without a doubt. It’s almost as if I took on all of Emilio’s empathy and compassion for others. I always had that. That’s the person that I am, and I’m an empath in many ways. With Emilio and from what I experienced with him, I had no choice but to realize in time that I just wanted love for others, God, my husband and family, and delved into the community. The community was another thing. I certainly learned strength and tenacity from Emilio because I saw it in his face in the worst of the moments he experienced. He definitely taught me that, but the compassion and as you say as well, your message of kindness to all. That all took over. I felt transformed in time, and I definitely feel transformed now, as does Richard as well.
It informed you about what you were going to be doing with your foundation, which we haven’t talked about yet, but we are going to get there. Before we do, tell us the meaning of the title of your book His Place At The Table. What inspired you to write it? The meaning is as simple. There will always be a place for him at the table. It was always in my mind. What inspired me to write this book is, first of all, my background, I’m a journal writer, so I always journal. Certainly, when I had Emilio come into my life, I had many journals about him, and then when he was diagnosed with leukemia, I had many journals about that entire journey. When I sat down to write this book about two weeks after my retirement from this big job, my career, I didn’t go back to the journals to remember things. Everything was coming out of my head. I knew that if I didn’t just sit down and plow through it, I was just going to forget things.
I never wanted to forget anything about Emilio or about our experience. I delved in, and that was October 2019. Honestly, it was such a journey. It took me five years to get my book published. It was just published on September 15, 2023. Four years to write four drafts to get a couple of different editors, great women, people I know, great editors in there to help me develop and get the content in a sense of order, “Where to start?” I’m well familiar with that. There’s a lot when we sit down and write our memoirs at this time in our lives. It was published and it has been an amazing ride in the marketing promotion and getting my book out in the world. It’s giving you a whole new mission and a way of helping people. You have an excerpt from your book where you talk about how grief still continues to sneak up on you. It’s not like you go through four years and you do your healing work or whatever, and it’s over. There’s a part there that if you’d like to share that with everyone, please do. There are two important topics to say, and that’s certainly grief showing its horrifying face at any time. There’s the creation of our nonprofit charity that was the ultimate source. I first want to share a story about a half marathon, the one and only I ever ran. I want to say to you that Richard, who was never a runner, when we were in Boston one morning, we watched with Emilio, people training for the Boston Marathon running past our hospital window. We asked a nurse, “What’s going on there? That’s a huge amount of people.” She told us these were people training for the upcoming spring Boston marathon. Grief shows its horrifying face at any time. Share on X Richard walked over to Emilio, looked him in the eyes and said, “When we get through this, I’m going to train for the Boston Marathon.” Emilio shook his head and said, “Good. I’ll come back here with you.” He goes, “Yes, you and mom will come with me.” It took ten years before he ran his first marathon. He did not realize that he’d have to qualify for Boston. You have to qualify. You’ve got to run within a certain timeframe in your certain age group. Needless to say, he became a serious runner then, when we created our nonprofit helping other families with children with cancer, Richard decided to do several different epic runs.
The ultimate run he did was from Seattle Children’s Hospital to San Diego Children’s Hospital. That is a story booked. It took two and a half months, and it was 1700 miles, and he ran 30 miles a day with 1 day off at midweek. That’s a whole other beautiful and incredible story. What happened to me was we had our charity going, and there was a running group who came on board to train for marathons and half marathons whereby they would raise funds for the Emilio Nares Foundation.
I got my arm twisted into running with them and training with them for fun to support them in what they were doing for us, but then I made the commitment to train for a half marathon. The half marathon was in Big Sur, Monterey, California. It’s a beautiful place. It’s very special and has several excerpts in our book about our time with Emilio in Big Sur. I’m going to go ahead and read this piece here. I might skip around a little because it could be long, and I don’t want to do that to our guests here.
“Throughout the first nine miles, I felt energized and joyful. The sun was shining, and I was having a fantastic time. The half-marathon route was absolutely breathtaking. We passed live music at nearly every mile marker along a rolling course that hugged the ocean. We saw otters floating on their backs, cracking open oysters, and the seal swimming parallel to the road, acted as our natural pacers. My first race, what a rush.
The entire Monterey Bay community seemed to be lined the streets to cheer us on. Their energy inspired me, and their signs made me laugh. I stayed slow and steady as Richard had taught me to do. My ultra marathon running husband surprised me by announcing that he would be running with me the morning of the race. I had no idea. I thought he was going to leave me at the start line, and that’d be it.”
“I didn’t think he’d ever have the patience to go that slow because his walk was certainly faster than my jog, but he stayed by my side the entire time. I had no way of knowing how important that would be. As I approached mile 10, and the half marathon was 13 miles, my legs stopped moving at mile 10. They felt like concrete blocks. Everything slowed down and seemed to move at a glacial pace. I remember saying to myself repeatedly, ‘I cannot go on. My body cannot do this. I do not have the strength or conditioning to go forward.’ I was foolish to think I could run a half marathon, 13.2 miles. I now know why Richard didn’t tell me that most runners hit the wall at some point. I would’ve become anxious, scared, and worried. He kept that imminent reality to himself.”
“It wasn’t as if I stopped. I was still moving my feet, but they felt like two tiny blocks trying to push a colossal truck uphill. Eventually, I was grounded in place, unable to move. This run was becoming more than tough. I started grasping for air. This was beyond the bounds of hitting a wall. I immediately recognized that it was grief. That grief, again, took control of my mind and my body. I did not have a mantra planned for this long run, but a phrase developed in my broken mind. Within a moment, I was repeating to myself, ‘If I can endure the loss of my only child fifteen years later, then I can do this over and over again.’ These words propelled me into survival mode, ‘If I can endure the loss of my only child, then I can endure this.’”
“Soon after, I could not stop sobbing. Grief was stuck in my throat, and I could no longer breathe. As I began to hyperventilate, I strained to get the words out, ‘It’s grief. I know it’s grief, Richard. I know this feeling so well.’ He was right there by my side. Richard encouraged me to walk slowly and take deep breaths. He put his warm arm around my shoulders and gently repeated the words, ‘Walk slowly. Breathe deeply. You will catch your breath again. Just keep on breathing.’ In what felt like an eternity, but in reality was probably about 60 seconds. I did start to breathe again in a normal rhythm. I regained the strength in my legs and started picking up my pace. I thought about how suffering through this race is nothing compared to what Emilio endured.”
“My son’s combination of chemotherapy and a bone marrow transplant is like running a full marathon and then getting in the ring with Mike Tyson for a knockout punch. I finally got my groove back. At some point during mile 11, I knew I was back in a safe place with the capacity to conquer the beast. I ran my heart out in the last two miles, pushed against human and natural feelings of despair and wanting to give up just as I had after Emilio left this world, but I didn’t, and I finished. Richard left a quarter of a mile before the finish line to get out of my way and let me cross over and get my medal.” It makes sense because you were running for Emilio. The grief was coming up because it was so associated with him. You talk about his legacy. You call him the little boy who inspired a movement. Let’s talk about the establishment of the Emilio Nares Foundation and share how it helped you and Richard to heal and transform your lives. It’s such a beautiful story. I look at the creation of our nonprofit as the ultimate healing tool that started getting me out of myself. That happened a couple of years after Emilio’s passing. We started our kitchen table conversation, and it began about what we do with our lives now. We know so much about this world of childhood cancer, what we do, and why research scientists and wonderful donor pools all over the world were raising funds for a cure for pediatric cancer. We couldn’t do that, but we knew that we could help people. It started very organically and very grassroots.
Richard became the executive director. I started a board of directors. We got an incredible person who believed in our mission of offering transportation to families who didn’t have cars and were taking public transportation to get their children to chemotherapy every single week. It’s totally uncalled for. How could that even happen? It happens and it doesn’t anymore because we have seven vans throughout Orange County and San Diego County, picking up children and nobody has to miss a cancer treatment or take a bus. What’s shocking is how many children are affected by this and how many families are affected by it. You think it’s like an isolated event, but it’s so not. We’re not presently in Los Angeles, but we will be. Let me fast forward to this fact of interest. There are 1700 children being treated at Los Angeles Children’s Hospital in need of transportation to get securely to their appointments every week. We’re on our way there, but we need to raise a lot of funds to do that. Long and short, as we started in San Diego, where we are now in Orange County, and we have various other healing programs that help families, transportation has become the flagship, but it became very much Richard’s life for the first sixteen years as executive director. I stayed working full-time. I call it the ultimate coming out of ourselves to think about others. That is a great point in the various stages of grieving. I’ve found that one of the most positive ways to grieve is to pay it forward and help others to take your pain, but now you use it and your experience to help so many others. It takes the focus off of you. It’s a tremendous comfort. What else would you like to share with us about the foundation and your book, and why do you say that the topic of suffering can bind humanity and become a vehicle speaking of vehicles for connection? I love that. If you can take me back with that if I get sidetracked here too much. As far as the foundation, I would love to say, that people could learn more by just seeing ENFHope.org. Our vans have traveled over 1.5 million miles since their creation in 2003. We have served over 11,000 families with the various programs that we offer. We’re the only outside agency within the oncology unit at Rady Children’s Hospital-San Diego, and CHOC, which is Children’s Hospital-Orange County, the only outside agency with a resource center that is very powerful, where our staff is bilingual and can help parents in need of filling out paperwork and all of the things that come up in life that have to be handled. It’s not just transportation. You do all kinds of other things for these families also. Particularly, the resource center is a super meaningful program that’s very needed. People can learn more about that. My book His Place At The Table is available in a variety of ways, certainly on Amazon and Barnes & Noble online and Bookshop.org. I’m a big believer in supporting independent bookstores. It’s in a couple of different libraries and bookstores in San Diego, but we’re working our way into other parts of the country. The last part of the question is suffering binding humanity. This is a very unusual, challenging, and difficult time in the world on so many levels.
People are suffering and there’s so much loss. Honestly, how do any of us know what to do with that loss? The inspiration from my book, and I’m hopeful my message is clear, it is love and compassion for all, but it’s also to give people hope that they can live again. One can transform and overcome the most devastating, profound losses in our lives. I want people to have that faith that they will get through this to the other side. One last thing I’d like to say about grief. Grief is so profoundly in our lives forever, and we learn that it doesn’t go away, but I look at it as a contrast. It’s like in our hands. We have the contrast of joy, hope, love, faith, community and family. One does not cancel out the other. All those beautiful emotions. On the other hand, we have equal time spent and shared with grief, anger, despair, heartache, pain and sadness. Constantly, all of us are living in a world of this, and we’re just trying to balance it all. All of these emotions exist in this big box together, bumping in and around one another, and we finally realize that we start to look at grief. It’s like, “You’ve returned, but get out of my life. I’m going to get you out of my life.” I know your book is wonderful. I read it, and it’s wonderful. Do you have a special offer for our audience if they’d like to purchase the book? I would love to offer them a discount for everyone who purchases a book. It’s 15%. There’ll be a specific code attached to it that you’ll be sending out that information. Tell us about how healing can switch the ratio of grief versus joy, and how a transformation can lead to a different you, which you were starting to talk about before, how you transformed into a different Diane. I write about the thought of that ratio from healing to joy, from sorrow to joy. In getting these feelings, there’s no timeframe for this. It’s not like one person should think they should feel a certain way in year two. Year two can probably be one of the hardest times ever because all of God’s anesthesia has worn off. How are we supposed to feel at five years old? I know there are professional stages of grief and it’s important to acknowledge that for people so they don’t feel so alone. It takes time to grieve and time to heal. Share on X For my situation, at one point, and I can’t tell you, “Was that your 8 or 10?” I’m not sure. All of a sudden, I remember Richard and I would have conversations that were saying, “There’s a shift here. Something’s happening. I’m feeling more joy than I am feeling more sadness.” It was as simple as that. He agreed that he was in that place too. We gratefully were following suit in our places of healing. It’s wonderful how you two grieve, grow and heal together and in sync with each other. We’re pleased about that because there’s a high statistic of couples whose children have died. Marriages don’t make it through. I want to tell everyone that even though it’s about a devastating loss like you had with Emilio, it’s also a hopeful, uplifting book because of the way that you guys got through it and your love saw you through and all. It’s a beautiful book, very inspiring. What are Diane’s personal tips for finding joy in life now that you have been through all of this and you’re on the other side of so much? What would you like to advise everybody about that? Thank you for noting that much of this is in my book in terms of offering that joy and hope to people, not just the sadness of our story. That’s very important to me to get that word out there. You’re welcome. You know that with each new day wake up and feel the transformation of what’s happened from the messages from Emilio in my life, from a greater purpose in life, and from the awareness that this small little world that we all live in is not all there is, there’s something so much grander that we will experience on the other side.
Just an understanding of that has helped me appreciate every single moment of nature, community, individuals, and all of the assistance from podcasts and literature that’s out there in the world to wake up and embrace it. Just embrace it and understand that when the fear comes and anything comes, that’s negative. You can just pull yourself out of that by your breath and your individual practice that everyone would be advised. I would advise you to develop whatever that looks like that’s healthy and real. That’s beautiful. There’s another remarkable quote from your book that I want to share with everyone, from His Place At The Table, because it was this life-changing experience that you shared in the book as Emilio left his body and it’s connected with what you just said. The quote is, “A tremendous force since surrounds the three of us. It was tremendous because it was an overwhelming, intense awareness of love and understanding. Following the ceasing of his final breath, another mysterious phenomenon occurred.” “Although the feeling was brief, I felt no sorrow but a blissful sense of peace. I knew in those moments that Emilio would always be with me. I felt a powerful, grand energy slip out of his body as it settled into the space between the three of us, and then a bright light highlighted Emilio’s left body, a light that had been waiting to receive Emilio’s sacred soul and carry him away with four so grand. There were no more thoughts or words that could explain those moments of truth.” After Emilio passed away just before his sixth birthday, you honored his memory by creating the Emilio Nares Foundation because there are no words to describe watching a family fight cancer and ultimately deal with the loss of a child. The foundation does everything in its power to anticipate a family’s needs during this time of profound grief. Your magical Emilio spirit is still felt in the hundreds of young patients. The foundation helps annually with laughter in the van, a comforting hand during hard times at the hospital and the smiling eyes of the families. Diane, thank you. I feel I also want to thank Richard for all you continue to do as an advocate for childhood cancer awareness. I thank you from my heart for this inspiring and incredibly moving interview. Here is a loving reminder to make sure to follow us and like us on social @IreneSWeinberg, on Instagram, on Facebook, and on YouTube. As I like to say, to be continued. Thank you, Diane. Thank you. My pleasure. Many blessings, and bye for now. Guest Links:
- Diane Nares’ book His Place At The Table: A Personal, Public, And Spiritual Love Story
- Emilio Nares Foundation
- Diane Nares’ book on Barnes & Noble
- Diane Nares’ book on Bookshop.org
- Diane Nares website
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