Having your child be diagnosed with a rare disease is every parent’s nightmare. How can one come to terms with the thought of losing a child? In this soulful and touching conversation, Karen Pulver interviews author and mother, Ellen Schwartz. Her books, Lessons from Jacob and Without One Word Spoken, recounts the many life lessons she has learned from her son. She talks about Jacob’s extraordinary struggle with Canavan Disease and his impact on Ellen’s life as a wife, mother, friend, and teacher. Giving her the unique perspective from which to view life’s most difficult challenges as its greatest gift, Ellen explores with us the ripple effects of an extremely precious life—one that might have been tragic but instead is filled with hope, joy, and merit. If you are facing challenges or fighting day to day struggles, then listen to this episode as  Ellen helps you not to sweat the small stuff, feel the gratitude, and smile each day!

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Watch the episode here

 

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Lessons From Jacob: Overcoming Life’s Challenges With Ellen Schwartz

A Mother Recounts The Many Lessons Learned From Her Son

You know how things happen and they are coincidences or things change in your life? I came upstairs to do this show in my office and there was banging outside next door because they’re redoing the roof. My neighbors were doing their roof. I frantically was trying to decide where I am going to go. I came into this room and this is my son’s room. In fact, it’s his birthday and I’m not with him. He’s in Toronto, but it is so interesting that I’m having this show in my son’s room because our guest is going to be talking about her son and the incredible life that he had, even though it was cut short. The incredible lessons that she learned from her son and how grateful she is for him being in her life, even though it was for a short time.

It reminds me of sitting in this room doing this show of how grateful I am for my son, and how we should cherish every single moment that we have with our children and with each other and support each other through any challenges that we have. We’re going to learn from our guest about the many lessons she learned from her son, Jacob. Her name is Ellen Schwartz. Ellen has three children. Her eldest was Jacob and he passed away at 21. I wanted to read this from one of her books. She’s the author of Lessons from Jacob: A Disabled Son Teaches His Mother about Courage, Hope and the Joy of Living Each Day to the Fullest.

“It was happening, the worst possible nightmare imaginable for a new parent, for any parent. It’s a rare, inherited fatal, neurodegenerative disorder for which there’s no known treatment or cure. All I heard was fatal. She must be talking about some other child. It felt like a huge door had swung shut on my beautiful dream. How was I to know that in fact, I had been handed the most wonderful miracle?” That is about her son, who had a rare disease called Canavan disorder. Ellen is a true goddess. She has the ability to move and inspire audiences due to her unwavering belief in her son’s abilities, her steadfast commitment to education and research into neurodegenerative diseases. Also, her heartfelt desire to help others cope with life’s toughest challenges. She is an incredible woman and we are grateful to have her on the show to share her story, to help inspire you perhaps and to help you to understand how difficult things can be, but you can still have hope with all the many lessons that her son has taught her and she is now sharing with the world.

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Welcome, Ellen Schwartz. Thank you for joining us.

Thanks for having me, Karen.

When we met, we were talking about being a mother and how becoming a mother was a huge dream that you had. Can you tell us a little bit more about that?

Even when I was little, when people ask me, “What do you want to be when you grew up?” My number one answer was, “I wanted to be a mom.” I could not wait for that day. It’s always something I knew I wanted to do and wanted to be.

You had Jacob. We were reading your many books. One is called Lessons from Jacob, in addition to, Without One Word Spoken. You wrote Lessons from Jacob in 2006. Can you share with us some more about your son? We know that he loved music and he had a great sense of humor. I’m in my son’s room and he is a hockey fan. He’s got hockey lights and Black Hawks, which is still on his bed. He still loves hockey. I know your son loved sitting on your husband’s lap and listening to the hockey games. Can you tell us more about him?

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I’ll go back and tell his story a little bit. When he got older, his disabilities were so severe that we couldn’t take him places. We tried to bring people to us. We built a house which was perfect for him, and I’m in the room that was supposed to be his. I’m sitting in his shower. I come here whenever I want to be inspired or live and feel the way my son did. This is his lounge. We saw when he was very young, about three weeks of age, he wasn’t making any of his milestones. He wasn’t lifting his head, his eyes weren’t tracking, they weren’t doing what babies are supposed to do. We had him tested for about two months. At four months, he was diagnosed with a rare, fatal neurodegenerative disease that attacks the central nervous system. It’s called Canavan disease. They told us he would never be able to walk, talk, see or move, and probably wouldn’t live to his fifth birthday. The doctors were right about a lot in his life. He never spoke one word. He actually said a lot. He was never able to move. He had very severe disabilities and a lot of complex needs. He lived until 21. Every day of his life was a miracle. We were lucky to have him in our lives and in our world for as long as we had him.

I know you had said in your book about this too shall pass. You mentioned that you learned so much from him, but one of the things was that. How did you use that though in your darkest days? I know even the simple little things, our readers are thinking, “I can’t get through this.” What you went through with all the operations and then you’ve also had miscarriages and a lot of different things happened and trying to figure out how to navigate, how did you do that?

I used to say, “This too shall pass,” a lot because we would go through endless bouts of pneumonia and his seizures. What I would say to myself, “This is going to end. Things are going to be okay again.” That would get me through moment to moment. Looking back, I wish it didn’t pass because I can’t bring him back. I said, “This too shall pass,” and it did, but I miss him every second of every single day. I don’t say that as much, but I did.

It worked for you at the time.

Still, when I’m going through difficult moments, I do say that to myself, “This is going to pass. This too shall pass,” but that happens with good moments too. We have to remember that. That’s something that I learned that when we’re in our moments of deep joy, our happiness, that’s going to end too. Our sorrow is going to end and so is our happiness. We have to be aware of that. Especially when we’re in our deep joy, we have to remember that somebody is going through deep sorrow and in our worst moments, somebody is going through great joy and that’s okay. That’s what makes the world go around.

I was talking with one of the featured goddesses that are joining us, Lara, about we can’t experience joy without experiencing some pain. It’s such a hard pill to swallow, but it’s true. We can certainly default to happiness or default to sadness, but until we experienced that deep feeling. In a way, that’s how, when I was reading your book and you were talking about blessings and about having him in your life, you are now able to experience to understand joy as well as sorrow. You had support as well. Can you tell us a bit about your support system?

We’re very lucky. We have a very close-knit family and we have friends that are family and family that are friends pretty much. We are surrounded by the most wonderful people. It’s such a gift to have people in your lives that will jump if you need them even without asking. When my son passed, we were in a rental house because we were building his room. There was a den on the main floor. It was wheelchair accessible, but that room had a fireplace in it. We had to turn off the gas because he was on oxygen. This room was basically a hospital room because it had his pumps, hospital bed and everything that he needed to survive.

He passed and we would have his Shiva in days when Shivas were happening, that was the only room I wanted to be in. I didn’t want to be anywhere else. One of my girlfriends arranged to have everything medically out of that room. She brought in a carpet, a couch and she got the fireplace lit. She put up his beautiful artwork in frames and made his room that would have been a hospital room into a lounge. For that week, we sat in there and we felt so close to him. To people in your lives who need to stay can do this, they do. That’s a real blessing for us because we had that always with Jacob.

Sometimes we’re hesitant, “Should we help this person? What should we do?” A lot of people don’t ask for help or don’t seem like they appear to need help. Even to send that text message, drop off a sweet treat or flowers, something to help is so supportive.

I’ve always said that, “What can I do to help?” It’s probably the worst question you could ever ask somebody who is going through a tough time because they’ll never ever say, “Can you do this? Can you do that?” They won’t. I know I wouldn’t. You just do. Guests could be wrong, but they know that your heart was in the right place and that you’re there for them. What happens is if you do jump to help, they may say, “Can you pick up my kids? Can you do this?” They know that you’re there for them. They dive in. Do something and help. Do whatever you can.

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If they don’t need help, they’ll know that you’re going to be on their radar. You are going to reach out to them should you need it. Should you need a meal? Should you need help? I’d like to bring on our featured goddesses. We have so much to ask you and so much to learn from you. I’m going to bring on Rachel, Dena and Lara. Rachel is going to start asking questions to you.

Ellen, it’s nice to meet you. I have to say how I’m inspired by your story and how on even talking about your son’s spaces. Living in this home that he never lived in yet, you had designated this room how it’s a place for inspiration. I think that you are connected on such a deep level to him, his spirit and all of the beautiful things that you did with your life. I was going to share a story. This is my husband’s older brother. He has severe developmental disabilities. This is how my husband grew up, with a brother who lived with them for the first thirteen years of his life. Now he’s in a community that’s called Soltane. It’s a Waldorf School of Philosophy. It’s beautiful. They live with companions. I think about the family dynamics. I remember my mother-in-law always says that she also wanted her sons that she had after her older son to also lead a normal life. It was an interesting family dynamic, but my husband is wonderful and has so much patience. He’s a different person because he grew up with a brother like that. I’m curious about your family dynamics and how that works.

We have a daughter and a son. I believe because of him, they are very well adapted. They’re resilient. They know how to bounce back when life hits hard. They are still caring and understanding. They’re not judgmental of anyone because they know there’s always a story inside the actions of someone. Since they were born, they’ve known that. They’ve been opening doors for us so we can carry him through or when we’re in the wheelchair van and we’re going down a hill and we would walk down, they would be picking his head up. They learned very young how to suction. They would lie beside their brother and make him smile. It’s molded them into the people they are.

I feel very blessed that they are who they are because of him. Our daughter is trying to get into med school. She wants to be a doctor. She wants to help people. If my son wasn’t here, she wouldn’t maybe have gone that direction. I’m sure you all know this. One of the best compliments is when somebody tells you like, “Your child was at my house and I need to tell you, this is something that they did.” That makes you so happy. It makes you feel so good because you know they’re good people and that’s all we want. We want the kind, expecting and loving people that we raised. My son was the best parent that they had. They’re great.

They will continue that karma with their children because I have to say my children, I remember one of my kids only wanted his uncle to push his stroller because we always get to see him. We always coordinate our family vacations around his vacation. We go to the Jersey Shore together. At least two weeks twice a year, we are with him. Also, my children have benefited from their uncle’s influence on our family.

 

Ellen, you shared your son with your fourth-grade classroom. I was reading about that and how wonderful that is. The parents and the other teachers were like, “What an amazing way to talk about compassion and empathy.” Kids loved having him in the class. I’m sure he loved being there wheeled around outside for recess.

I still am a teacher. My teaching has morphed into something else. When I was a teacher, I used to bring him into my classroom. I can’t think of a better lesson on empathy than exposing children to things that are different, letting them ask questions and letting them understand. My son taught many people. Almost everybody who took the time to get to know him, they knew him by feeling him. You felt his goodness and his kindness. When somebody made him smile, it lit up his life and you could see it. It lit up their world. Anybody that became his friend kept coming back. He had the most beautiful friendships I’d ever seen.

Our house was always busy with love and music because he loved music. We learned very early on that was how he communicated. There was always music when he was around. He was always around, so there was always music. We brought him the most talented, wonderful people that would come in, especially on Sundays, into our house to sing to him live. Even since his passing, we continue that legacy. Since COVID hit, we’ve been having live Zoom concerts every Sunday with the special needs community. Many of my son’s talented friends and every Sunday at 4:00, we get together and it’s so uplifting. It’s almost as if he is there too. I feel that he’s there.

I had the privilege of joining in on the Zoom. I highly recommend it. I saw the families all sitting on their couches watching. I don’t remember her name, but there was a girl that was singing along with music that I had tears. It was so beautiful and everyone commenting on her and her smiling afterwards. It was such a lovely way to continue his legacy, especially with something he loved. Lara, you have some questions for Ellen?

Ellen and I have known each other for years. I’m not sure if I ever told you that I read your book, Lessons from Jacob, when you had written it in 2006. It was at a time in my life where reading was a big challenge for me. I was busy with my three kids and I’d pick up a book, end up falling asleep and throwing in the towel. I received your book where I went and purchased it. I literally stayed up until 3:00 in the morning reading it. I could not put it down. I was overcome with emotion. I can clearly remember sobbing and reading and getting this amazing sense of positivity. This gift that you were sharing with everyone in the world to look for the silver linings or find the positivity when you’re hit with this sadness that you’re trying to work through and make it work.

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I was going through the loss of my mother and raising my kids with a hole in my heart, and it was challenging. It was a gift that you gave me many years ago. One thing hit me when you talked about a situation you were in Starbucks, overhearing some women chatting, young moms. They were basically sweating the small stuff when it came to raising their kids. I particularly had many conflicts with that hearing people complaining when I thought, “You should be grateful.” I was wondering if you can reflect on that moment. That might have been the beginning of you sharing your son’s lessons with the world. Was that one of the reasons? Can you reflect on that and also why you chose to write the book?

Being hit with news like that is devastating. At that moment in Starbucks, my latte was my happiness. I will take that latte and we’d go every morning and it was our thing that we did together. I would sip and I go, “It’s going to be okay.” I remember standing in line and hearing these parents talking about baseball, how they got struck out and the ref wasn’t being nice. I wasn’t in a place to listen to that because I was in a place of, “Are you going to live until tomorrow with my child?” I remember feeling like, “Seriously?” That’s the only time, honestly, that I felt anger, but I guess it must have been one of the stages of acceptance. That takes me back.

The reason I wrote the book, and it’s a funny story. I was laying in bed with my son and my husband. I said to my husband, “I’m going to write a book. We need to share these lessons. We need to share his life. We need to talk about all the good that has come out of his life.” I have a lot of ideas as a person and I always have these great ideas. Sometimes I pounce, sometimes I don’t. He said to me, “I’ll believe it when I see it.” That was it. That’s all I needed. I started writing and I’m so thrilled that he said that. I’m happy I did because it was so cathartic to write that first book, especially because it was me coming to terms with all those feelings and being so raw and honest.

The second book was more all the lessons I learned in a much happier place. In the first book, I was struggling. In the second book, I was like, “I have this worked out,” but then now I’m writing again to release the second book with eight chapters because I was on my head again because my son passed. It was like, “I was not equipped for that.” I had 21 beautiful years to prepare me for that. It happened and I was not prepared. I have a little bit to say about grief in moving on through grief and a few more lessons to share here too.

I’m very looking forward to that book and I am going to buy it. You inspired many with your lessons and your son’s lessons. I thank you again.

 

In your first book to talk about the lessons in this book, the first one, “Number one, worry time. Now I only worry about things that I can control.” I love this, “Every day, I set aside a specific time to worry. For me, it’s in the shower.” We talked about this on another episode with Leslie Davenport, who’s a psychologist. She said the same thing about spending whatever time you need during the day, 5 to 10 minutes to an hour, and then putting it away. Later on, if it pops up in your head, you’re like, “I already worried about that. I’m going to save this for tomorrow.” I found that important to learn. You talked about controlling what we can. Making appointments, taking care of things that you can, but then letting it be.

The second one is no expectations, not expecting anything and you’d be surprised by the generosity of others. The less we expect, the happier and more fulfilled we are. The third was a pity party. You said, “Whenever it is necessary, I plan a pity party. I vent about my marriage, my frustrations, our children, family problems or life in general, but then you go on.” Me time, definitely making time for yourself. Perhaps it would be the latte or even punching into the air and then making someone else feel special. “Every Friday night, I make a Jewish sweet bread called challah.”

Every Friday night, your husband sits your son on his lap and they cut the bread together and you deliver it to different people. You’d have fun trying to figure out who would this challah go to and smiling, “My son loved to smile, but he encouraged you to smile, it seems.” I wanted to read those because of what incredible lessons in this book and then the next book, Without One Word Spoken, goes into even more lessons. I’m not going to read all eighteen, but I want our readers to know how inspirational this is. Is there anyone lesson or a few from the ones I shared that you feel perhaps our readers can focus on to help them get through daily struggles?

The worry time is absolutely key and it’s hard to do. Especially as a mom, I don’t know if I could speak for all, but we’re constantly worried. Am I wrong? It puts that time. It’s like an important meeting that you have that you do not miss. For me, I get to have a shower. I get to be clean. It’s like double, but you hop in that shower. I worry about anything that is bothering me. If you can control it, we take care of it right then and there. It’s out of your head, it’s gone, but often we can’t. If you can’t, then you have to stay to yourself, “There’s nothing I can do.”

You keep going back to it tomorrow to eventually it’s not a worry because, as we talked about, this too shall pass. It does get you through those times. One thing that also helped me is I call it a memorizing moment. It’s taking a mental snapshot of when you were feeling joy and happiness. Often, we get busy with life and you’re feeling this moment and it’s wonderful, but then it goes. What I find in those moments, I stop and my kids giggle with me because they know exactly what I’m doing. First, I look around and they shut my eyes so I can feel it and sense it. I can smell and I can hear.

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Eventually, when you’re feeling low, you can shut your eyes and that moment comes right back. The beauty of it is even when I don’t have my son, often if I’m feeling stressed or I’m feeling not happy, I can shut my eyes and I’m lying in bed with him. I can smell him. I can feel him. I feel his breath and he breathes so slow. It slows down my breathing and I go to this place and we can all do that. We can all go to that place if we take the time to recognize and we’re so at peace and memorize it. That’s another thing that helps.

Do you all do that? Rachel does? Lara does?

I live my life exactly the way you’re talking about. It’s like this amazing place for me, I feel like my spirit guides come to me. I worked everything out and there are a lot of things with water. Even worry, I am good at compartmentalizing it. I haven’t gone through the same struggles as you, but in life in general.

I was going to say, I started to journal and I get that statement. I would have my worry. I put it on paper and I hope for the best. I reflect at the end of the day to see if any of those things came to be. Most of the time, the worries never happen. I definitely do that. I love the idea of having that time in the shower. I was going to say also, Karen and I were discussing this and all of us have. It’s something, Ellen, that you can take a snapshot of that moment of joy. You have a lot of contrasting feelings and you can feel that pure joy. That’s important for people. There are people in life who are lucky enough to sail along and they don’t have these emotions. It’s amazing to share with others to take the time to take the snapshot. It’s a great idea. I’m going to do that.

Dena, do you?

 

I don’t do the breathing. The shower is not my happy place. As I’m saying this, it brings me back to my situation, which I’ll touch briefly on. Everyone knows I lost a husband and have two little girls. I try all the time to remind myself that I’m still very grateful for them and not get caught up in all the little things. Should it be not making a certain team, get invited to a certain party, not get the grade or whatever the case maybe? I’m oftentimes reflecting and realizing that I have so much still to be grateful for. Clearly, my loss and grief showed me that. My kids, like your children, they’re very resilient. They came to the world with this and who they are. It defines them. The breathing is beautiful and it’s something that I definitely need to look into and start practicing. It would slow everything down for me.

I wanted to read in your book. I read this book too. You talked about this. “Nothing grabbed me until I opened Many Lives, Many Masters by Brian L. Weiss, former head of psychiatry department at Mount Sinai Medical Center in Miami Beach. The book gave me exactly what I needed. I needed to believe that there was life after death. I needed to know that my son wasn’t put on this Earth to suffer and die young. I needed to know that my son’s life had a purpose. I needed to know to understand why he was here for his sake. Maybe he was here for the rest of the world. We are here to learn a lesson in life. Once those lessons are learned, we can move on to a better place and a better world. In fact, religious people would say when they look at him, they would feel God’s presence. They feel he’s on a higher spiritual level.” I feel you are on a higher spiritual level.

I feel that I want to be with him again. I need to see him again. I’m not a songwriter but in honor of him, I wrote a song. In the song are the words, “I’ll earn my wings to be with you one day.” That is how I’m living every day now. I’m trying to be as good as I can be. He was this pure soul. He lived. I don’t think he ever had a negative thought in his life. He was pure joy. He was loved. If you could personify love, it was my son. I’m trying as hard as I can to live my best life so I can see him again. I know he’s out there and I know he’s in a good place. I want to get there. I’m not in a rush. I have lots to do here. I want to see our children married. I want to meet our grandchildren hopefully one day. There’s so much to live for, but I do want to be with him again one day.

Before we get into your initiatives, Dena wants to ask you more detail about, I did want to touch on this because it was not without struggle. You’re very candid about your struggles in your book, Lessons from Jacob, with your husband. Every marriage has issues, but dealing with a child that is going through this, you took turns. You didn’t sleep in the same bedroom. Even day-to-day struggles that we all have with our spouses, looking at what you went through, but you admit to it, you talk about it and you went to therapy. This is important for people to hear because sometimes people feel like, “They’re not going to get help. They’ll get through it,” but we all need help. We need support. You talk about that. You talk about how now your marriage is even stronger than ever. Can you share with us a little bit more about that?

Our marriage is strong now. I’m more in love now with my husband than I ever have been. I was in love with him always. We have our struggles because we’re different people. One thing that I learned is you have to accept each other for who each other is. There’s a reason you married that person. Those are usually the reasons that drive you crazy later. I have so much respect and love for him. We can only change ourselves. I’ve changed myself a lot and I believe he’s changed himself a lot. We’ve been through so much with each other and we’re always there to support each other no matter what. To know that somebody has your back every second is a pretty wonderful thing. We got a puppy. Now again, we’re taking turns nights back to when my son was little, but yet we’re very lucky. You have to go through those rocky moments again. Lara, what you mentioned, if you don’t go through the crap, you’re never going to get to go through all those beautiful moments together. You have to go through it. There’s no doubt about it.

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Something like this can break up a marriage. It’s important to recognize, like you said, I believe the rabbi told you before you were married about 90%. What was his phrase?

He said, “The only way your marriage is going to work is you both give 90% and take back 10%.” That equation works with every single relationship. As soon as you start expecting, you’re going to be disappointed. If you don’t expect, you’re always surprised and you’re always pleased.

That’s what your son has taught you and it’s true. Dena, can you ask some of your questions?

It’s without saying that we see your resilience and your perseverance during your son’s life and after. I’m curious to know about what incentives you’re doing. I know you spoke about the third book you’re writing in order to help others and maintain his legacy, which was huge.

We started that. That’s something I look forward to every single week. It takes some planning and I sent out the emails to the performers who are in and I get that. It’s so sweet and I get to plan. That’s a nice part of my week. Also, I run a program in different schools called Project Give Back. It’s catered to elementary students and it teaches kids the value of empathy, compassion and community-mindedness. We’re in schools all over, but then COVID hit and we can’t be in all the schools we are in. I started something like this in a Zoom format. It’s called Project Give Back Connects. It’s me interviewing the most unbelievable people. The shows are taped and they’re sent to teachers and classrooms all over. It’s been a real treat to have these conversations similar to this. It’s learning through empathy and sharing that. I’ve been working on that as well, which has such a highlight.

Is it something that you brought here in the States too or no?

We tape it and I put it on YouTube, but then we send it to lots of teachers. Anybody could access it.  Some people don’t know about it, but yes, of course. You can watch our last episode. We had one on anxieties. We had one on overcoming challenges. We had one on resiliency. Another was all silver linings with my friend who has triplets. They all have cerebral palsy. It’s her story and one of her sons’ calls talks about what it’s like to have cerebral palsy. It’s probably one of the most beautiful things I’ve ever seen in my life. I get joy from watching other people feel joy. That fills my bucket. I’m going to continue to do that and the power of giving. It’s almost selfish because you’re giving, but you get so much more by giving to others. That’s how I roll.

I can’t wait to watch Project Give Back.

Also, now there’s testing done because of your son and what you went through. Can you share that?

Back in Starbucks, when my son was two, we had to do gene replacement therapy at Yale to try to insert the gene that he was missing to hopefully help cure him. We were all over the news and I was having my latte as usual and our barista said, “We want to help your family.” I ran home to my husband and I said, “Starbucks wants to help us.” We personally didn’t want to take help from Starbucks, but we decided, “Let’s start a charity. Let’s do something to help others.” We started a charity called Jacob’s Ladder, The Canadian Foundation for Control of Neurodegenerative Disease. Starbucks was our first donor and with them and then this whole family donors over many years, we ran a charity. It raised over $3 million for education awareness and research into neurodegenerative diseases. One of the things that we were able to do was have screening covered for Canadians for free and hassle-free for several devastating diseases. That was one of the platforms that we were able to do through Jacob’s Ladder.

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You sell these bracelets.

The money from these bracelets now funds some classes for Project Give Back.

Tell us about the bracelet. The bead is a significant part of it. Can you tell us what happens when you roll it forward or backward?

I make these personally. They’re made with love, every bead, by me and sometimes my daughter. If we have a big order, sometimes friends come in and we sit at our table, we all bead away. The bracelet represents my son’s lessons in life, which are to be appreciative, to be positive and to be understanding of others because that’s how he lived his life. That’s how I try to live my life. The shiny bead is if you’re not feeling it to roll that bead towards your heart and to remind yourself to go back there, to go back to that person that you want to be.

I have purchased one for each one of my featured goddesses. I did pick gold, but they do come in silver and black. Maybe we can take personal orders for the color. Although did you already start making them?

There’s a blue, black, silver and a rainbow one. The rainbow is new. There’s a gold one. You can go on Project Give Back website. They’re all there. Let me know which one you want and I’ll do that. All the money now goes to the classes.

This may be a touchy subject, but I’m very curious and I think it’s important to know. You did get pregnant again after your son and you did get screened again. Can you tell us about that and the reason to do that and what you went through going through that?

I was pregnant seven times. As you know, I have three children. I had a couple of miscarriages in there and I had to be tested to know that we weren’t going to be bringing a child into this world who suffered and was going to die. For me, it was a very personal decision. For anyone, it’s a personal decision. It was nice to know that we could be tested and we could know we could have this information. I would never have thrown my son away. I love him and I am so grateful I had him, but I talk about a lot of the good but he suffered greatly. When he suffered, it was heartbreaking for him to live with this, to watch him in pain. There were some days where he was having over 50 seizures a day and you couldn’t help him. There was nothing you could do. To watch him to try to breathe, it was a year where he was drowning every day. I could never knowingly give a life of someone who was going to suffer greatly. Although, he was so wonderful. It’s a very personal subject and it’s something that I could never give an opinion of others.

You write about it in your book. It’s important to share because it is a personal decision, but it is amazing that now they’re able to test for that the same as they’re able to test for Tay-Sachs disease. Understanding that you are able to create this for people to be able to do and to figure out on their own. Getting back to all the amazing lessons that your son taught us, if our readers would like to reach out to you to be involved in the many initiatives that you have done and continue to do, how can they do that?

You can get me by [email protected]. It’s an easy way to get them by email. Even if you go on the Project Give Back website, the info will go to my friend, but then it comes right to me. Those are two very easy ways to get there.

Thank you for sharing with us.

I have to tell you, I was on your show with Susan King. I reached out to her. She got right back to me and we had the most beautiful telephone conversation. I want to thank you for that because, without you, I would have never known about her or reached out to her. She’s lovely. She confirmed a lot of things with me by being an intuitive that she knew about me. There was no way she could research. There’s no way like a childhood incident that happened to me when I was six years old, the trauma that she was feeling and she knew about it.

I love hearing that because I love her. She’s great. Sometimes she tells you things that don’t make sense and then they come to you later, but she seems to tap into her intuition. I’m so happy. Did she help validate some of your feelings and the things you were going through?

She did. There was one thing that I thought was interesting because of my son’s name. She said, “His name’s not that.” I said, “I made that.” She’s like, “No. I’m getting a Y. I’m not seeing his name. His name starts with a Y.” His Hebrew name is Yaakov. For the whole conversation, she never called him by his name. She only called them Yaakov. She’s thought through other things that I thought were interesting.

You touched on the point that you would like to keep the thought process going that you’ll be reunited with your son and you want to earn your angel wings. I want to say, you are remarkable. You’re such a standout example of someone who gets joy at giving random acts of kindness. I sense that about you and I don’t know you that well, but I have to say that it gives me almost the shivers to think, when you think of that expression, “God gives you what you can handle.” You exemplify that for many people. It’s extraordinary. We all learned a lot from you.

I’ve got to come back to you. A very close friend of Lara’s and a friend of mine passed. One thing I noticed that I saw you doing, which has touched me every time I saw you was she would take her daughter to spin class once a week. It was their date. I got to see that. I got to witness that love that you had for your friend and your daughter. That was such a beautiful thing. When I say, “Just do it, go for it. Don’t ask.” I was watching you do that for your girlfriend. That was beautiful to see. Thank you for that.

You spiritually helped my beautiful friend, who I miss every day. I know she had conversations with you that set her at ease. She was very grateful for that.

Thank you so much. You are the goddess of gratitude, of grace, of giving. There’s such a long list. You’re being vulnerable sharing your stories with us about your incredible son and all the lessons that he’s teaching us. I know this is going to help people. I’m hoping this platform will help our readers, whether you’re struggling through something or you’re in line in Starbucks and you’re thinking about your child not getting on the baseball team. Take a minute, stop and think about how grateful you are. You have your child. Thank you for joining us.

Thank you. It was such a pleasure.

—

Thank you for joining us on Favorite Things with our guest, Ellen Schwartz. We were talking with her about the many lessons that her son has given to the world. One of them is learning to appreciate and be grateful for each other. My favorite thing is these stones. It’s interesting that I’m in his room. My son collects stones. In fact, he’s got on his desk all of these smooth, black stones and they’re all over his room. He places them in specific spots. I had ordered these stones that say gratitude on them and they’re key chains. I got them on Amazon. What I learned from our featured goddess, Rachel, she gives out little stickers that say, “You are beautiful.” I’ve been giving these gratitude rock keychains out to people. I carry a handful in my purse. If there’s someone that I’m feeling gratitude about or just a random act of kindness, I’ll wipe it off with hand sanitizer and then I’ll give it to that person. You will all be getting one. It’s a nice reminder to keep your keys on here to always have gratitude. That’s one of my favorite things. Lara, what would you like to share?

I’m very into scents. Dena, I know you are too. My grapefruit essential oil starts my day. I sometimes drop it into my shower and I take a little sniff before I work out. I have a cork mat in my gym, and I’ve been dropping it on my mat and I use it in my diffuser. It starts the day I find when I have this in the house in the diffuser, people are waking up in a better mood. I’m a morning person, but I’m noticing the non-morning people seem to be a little happier.

What is it called and where do you get it?

You can find this in any brands, but it’s a grapefruit essential oil. You can find it at any health food store.

Thank you for sharing that. Let’s see if Dena brought a smelly thing too. She always seems to find amazing smelly things.

No smell. I’m a big monogram person. I love everything monogram. It was a pretty gray monogrammed blanket. It’s by Matouk. It’s super soft. It’s at the end of my bed for decoration, but I find that I’m the only one that cuddles up with it. My husband doesn’t. It’s cozy, warm and it’s been dog friendly. My dog has not torn it apart or gotten all over it, but I’m in love with it. As it gets colder, I find I’m gravitating to it more. You can probably get it at Bloomingdale’s already or an online bedding store.

Rachel, you’re up.

I am going to talk about bracelets since we were talking about them. I already talked about Sistah Biz. I’m wearing these two bracelets and I am trying to embody good all the time. Ellen, your story resonates with me and how I live my life. Karen, thanks for the shout-out for the ‘you are beautiful’ stickers because I love it. It’s the greatest honor that you did something that I am doing.

You inspired me to do that because everyday people are doing little tiny gestures and you want to show them how much you appreciate them, and that will make their day.

I love big chunky bracelets. I came a few years ago to be like, “I have always loved Wonder Woman.” That is who I channel. I’m obsessed with her. In fact, I wear a Wonder Woman hat on my walk with my husband, but I always wear big chunky bracelets. Although during quarantine, not so much. It’s for my little Sistah Biz. I want to highlight this one and it’s made and designed by a woman. Her store is Winifred Grace and it’s in my neighborhood in Andersonville, but I have known her for many years. She opened this cute boutique. If you are looking for a small woman-owned business to buy holiday gifts, go to her boutique. She has designed beautiful jewelry. She has super cute clothes at decent price points. She’s not crazy expensive at all, like a little boutiquey store. She also sells jewelry from other designers. That is my shameless plug for Winifred Grace in Andersonville in Chicago, Illinois.

Ellen, what did you bring for your Favorite Things?

My favorite thing is actually my favorite place. It’s also my favorite view. This is my view at the cottage. We built a wheelchair-accessible cottage that we go to and where my son and I would sit out there, we have coffee in the morning, back again lying on the sunsets. It’s a gathering place for family and friends. It’s by the water, which is for us so peaceful. This is my favorite place, so that’s my favorite thing.

We have a family cottage too on Lake Simcoe. It’s beautiful to sit. You told us a story about a swan being on Lake Simcoe during the winter. Can you share that to our readers?

We’re talking about signs, and especially with Dena and Lara with signs from the other side. They asked me if I have seen signs of my son, and I definitely have. One of those signs was Lake Simcoe freezes in March, and there were a few puddles on the lake. I looked out the window and there was a swan sitting in the puddle. That was something that I had with the water. Water is a big part of our family. My husband and the kids are big water skiers. We love to be on water always.

It’s interesting because I do feel like our guest, Ellen, is Wonder Woman. I wanted to end by reading in her book, Lessons from Jacob, a song that I believe your sister-in-law sang. It’s a moment I will never forget. They sang this original song for him. They wrote this for him. “One heart, one soul, a guiding light, not a word need spoken, not a step need to take. Look what a difference one brave boy can make. Playing games, singing songs, spreading love and joy, climbing a ladder to a cure for one special little boy. His laughter is contagious. His smile is so bright and inspiration to us all. He truly is a shining light. Jacob, Jacob, guiding us in his own way. Jacob, Jacob shows us what matters each day.” I’m tearing up a little bit, but I love that song. I love your story. I know this will inspire and help readers. Thank you, Ellen, from the bottom of my heart for coming on the show.

Thank you, everybody. It was nice chatting with you, guys.

Thank you.

Important Links:

• Lessons from Jacob: A Disabled Son Teaches His Mother about Courage, Hope and the Joy of Living Each Day to the Fullest
• Ellen Schwartz
• Without One Word Spoken
• Many Lives, Many Masters
• Project Give Back
• Project Give Back Connects – YouTube
• Jacob’s Ladder
• Jacob’s Ladder, The Canadian Foundation for Control of Neurodegenerative Disease
• [email protected]
• Susan King – Previous episode
• Matouk
• Sistah Biz
• Winifred Grace

About Ellen Schwartz

Ellen Schwartz is an elementary teacher, community leader, author, and public speaker. As the founder of Project Give Back she links her decades of teaching together with her personal passion for charitable causes. She co-founded Jacob’s Ladder, Canadian Foundation for the Control of Neurodegenerative Diseases.

Jacob’s Ladder raised over three million dollars towards research, education, awareness and therapy into neurodegenerative illnesses.

Ellen has written two books. Lessons from Jacob: A Disabled Son Teaches His Mother About Courage, Hope, and the Joy of Living Life to the Fullest and Without One Word Spoken. Without One Word Spoken rated a National Best Seller by the Globe and Mail.

Ellen has been honored by the Israel Cancer Research Fund, Ve’ahavta, Aish Toronto, Sick Kids Hospital and Brilliant Minded Women. She was awarded a Queen’s Jubilee medal, the Meritorious Service Decoration by the Governor-General of Canada, and a Canada 150 Exemplary Canadian medal.

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