022 – A premature birth and the complications afterward help Adam Levy launch The Nora Project.

Transcript:

Dad To Dad 22 – A premature birth and the complications afterward help Adam Levy launch the Nora Project.

Tom Couch: This is the Special Fathers Network podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support, or if you’re a dad who’d like to offer support, go to 21stcenturydads.org.

David Hirsch: Hi, I’m David Hirsch. This is the Special Fathers Network podcast, stories of fathers helping fathers.

Tom Couch: And I’m Tom Couch. Today, David talks to special father Adam Levy.

Adam Levy: In spite of all the nightmares that were in the beginning of our story, we feel so lucky to be where we are.

Tom Couch: Adam is a personal trainer who lives in the Chicago area. He and his wife Lauren are parents of four-year-old Nora who has complex medical needs due to a premature birth.

Adam Levy: We weren’t allowed to hold her for the first several weeks, because she couldn’t maintain her body temperature. Her skin was so thin and she had so little substance.

Tom Couch: It was a tough time for Adam and his family, but like many special parents, they persevered.

Adam Levy: The best advice I got is just to be present with Nora and to appreciate Nora and each other.

Tom Couch: And as a direct result, the Nora Project was formed. It’s a program that teaches students to treat their special needs classmates with empathy and kindness.

Student: It’s really fun to meet people who are different with a smile. You can still be friends with them, no matter how different they are.

Tom Couch: And it all ends with a custom made video and a red carpet film fest.

Student: I’m taking photos and videos of Tommy. He loves the parachute and he loves to go under it.

Tom Couch: It’s an amazing story, and we’ll hear it on this Special Fathers Network podcast. Here’s your host, David Hirsch.

David Hirsch: Being a father is very important to me. Being a good father means being a successful role model for your child, helping them be happier, more fulfilled, and productive members of society. I’ve started a number of charitable organizations designed to increase the role of fathers.

One of them, the Special Fathers Network, is a dad to dad mentoring program for fathers, raising children with special needs. We’ve been interviewing some exceptional fathers of special needs kids, and we want to share their stories with you.

Tom Couch: So let’s listen now to David Hirsch’s conversation with special father Adam Levy.

David Hirsch: I’m thrilled to be talking today with my friend Adam Levy of Chicago, a father of a young daughter and who is a personal trainer. Adam, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Adam Levy: Thank you, David. I’m honored to be here.

David Hirsch: You and your wife Lauren are the proud parents of Nora, who’s turning four, and who has complex medical needs as a result of a very premature birth and complications from surgery.

Let’s start with some background. Where did you grow up? Tell me something about your family, including your siblings.

Adam Levy: Sure. I grew up in Highland Park, Illinois, which is a northern suburb of Chicago. I have an older brother and a younger brother, spaced about four years apart. We grew up as a pretty close-knit family. My father was a commodity trader, an immigrant from Israel, and my mother was a travel agent. Both my parents were always very present and extremely selfless in their parenting with all three of us boys. We were clearly the focus of the family unit.

David Hirsch: So you’re pretty close to your brothers.

Adam Levy: Very close to my brothers. We right now live a mile apart from each other in the city.

David Hirsch: Oh my gosh.

Adam Levy: And Lauren and I are taking Nora up to Highland Park to return to our roots and to get a little more space. So we’re moving in August.

David Hirsch: Yeah. Congratulations.

Adam Levy: Thank you.

David Hirsch: One of my takeaways, just having you talk about your dad and your brothers, is that you’re a very entrepreneurial family.

Adam Levy: Yes.

David Hirsch: They’re independent thinkers, thinking outside the box and coming up with solutions.

Adam Levy: Yeah. There are no limits to what the Levy boys think is possible.

David Hirsch:. That’s awesome. So, how would you characterize your relationship with your dad?

Adam Levy: My dad would do anything to honor me and honor his kids. He takes that as his number one, closest to heart responsibility. He is entirely selfless in that regard and has always been that way. He has always tried to honor his parents, and at the same time take care of his kids with whatever their needs or desires may be.

He came to the country in 1976 from Israel, and he did not speak any English. He started teaching tennis at Lakeshore. Now it’s Lakeshore Sport and Fitness. He taught tennis up to 80 hours a week, which is a lot of hours to be on your feet. And he established relationships that would eventually lead him to commodity trading.

And what we understood growing up was it wasn’t about your education, it was about your relationships. It was about being a good, honest person, and taking care of the people that love you, and letting the chips fall where they may at that point. But always working to get after where you’re going. One of his biggest lessons is to honor people and respect people and to make sure you show your respect to individuals that are going out of their way for you or taking care of you.

David Hirsch: That’s awesome. So, what role, if any, did your grandpas play in your life, on your dad’s side and then on your mom’s side?

Adam Levy: My dad’s father lived in Israel. He passed away about 10 years ago. We would see him a couple of times a year and speak over the phone. He was always a very loving grandfather. I remember everyone saying he was a tough guy and never feeling that way about him. Just always feeling warm love from him.

My mother’s father, Poppy, man, he lived in the world that he wanted to live in, regardless of what circumstances were around him, in the best way possible.

David Hirsch: What do you mean by that?

Adam Levy: Well, he just did what he wanted to do. It was really important for him to swim. It was important for him to eat the way he wanted to eat. It was important for him to drive a convertible till his dying day. It was important for him to smoke cigarettes, even though he’d had three heart attacks.

David Hirsch: Oh my gosh.

Adam Levy: And he lived such a happy man as a personal trainer and fitness. Not myself. I look at those cigarettes and think, “Oh dear.” But I respect how much love emanated from Poppy and his ability to live in his lane, completely happy and taking care of so many people along the way. It was really infectious.

David Hirsch: That’s awesome. So were there any other father figures growing up, other than your dad and your grandpas, people that played an instrumental role in your life?

Adam Levy: Yeah. Growing up, my dad’s youngest brother, Benny, who’s 20 years younger than my dad. Uncle Benny was essentially my oldest brother. He lived with us growing up, and took us to Cubs games, and always took care of us. This group of boys, and men eventually, were a really cohesive unit. We all saw ourselves that way and still do.

David Hirsch: That’s awesome. So where did you go to school?

Adam Levy: I went to Highland Park High School, and then I went off to college at Emory University in Atlanta, Georgia.

David Hirsch: What’d you study there?

Adam Levy: I studied finance and marketing.

David Hirsch: And when you graduated, what were you thinking?

Adam Levy: I graduated and I began trading commodities from home. So I was off the floor. And I did that until Lauren and I got married in 2013. I graduated 2005, so that was eight years of commodity trading in the morning.

And in the afternoon, I was personal training, because I really needed some human connection. I also needed some control over the outcome of my effort, and I found trading to have its value, but also it did not provide me an outlet for exerting myself on the world and seeing the impact there.

David Hirsch: Awesome. So how did you meet Lauren?

Adam Levy: I had the biggest crush on Lauren in sixth grade when our grade schools merged into Edgewood Middle School. We became really fast friends, and our parents had to get a second phone line because we were clogging up their phones every night. And sometimes we would fall asleep talking on the phone to each other. I remember one morning waking up and Lauren saying, “I got to go to ballet. Bye.” I’m thinking, oh my, we just kind of had an overnight phone sleepover. That’s really cool.

David Hirsch: So your families have known each other for a long time?

Adam Levy: We’ve known each other for awhile. And I asked Lauren out in seventh grade, and she said no, and I was really upset about that. So we were not friends for the next lots of years. I was really immature and mean to Lauren, which I regret.

But then at our ten year high school reunion we reconnected, and that spark and that deep understanding of an individual came rushing right back. And it was like the 12-year-old version of me knew exactly what he wanted, even at 28 years old. I was really struck by that, and I think Lauren was as well. And it’s taken off ever since. The rest is history.

David Hirsch: That’s a fabulous story. Thanks for sharing. So let’s talk about the special needs community, on a personal basis and then beyond. Before Nora was born, did you or Lauren have any connections to the special needs community?

Adam Levy: Mostly I would say a slightly removed respect. We sat on the sidelines to some extent and just wondered how it was that these families and individuals carried on with as much enthusiasm for life as they did. It’s obviously very different being on this end of the spectrum. I have a great understanding of how that works now, but growing up I was really intrigued and mind blown by a whole thing,

David Hirsch: So limited, if I can paraphrase.

Adam Levy: Yeah. We volunteered at Misericordia, but we didn’t know too many people intimately in our lives that were parents of or individuals with special needs.

David Hirsch: Okay. So as I recall, Nora was born at 26 weeks weighing just over a pound.

Adam Levy: Yeah.

David Hirsch: Four months later, she required emergency surgery to remove part of her intestine and colon, and then she was finally discharged from the NICU at seven months, weighing about eight pounds. What was the experience like, her premature birth?

Adam Levy: It was wild. Well, the pregnancy had complications from the 12th week, and we knew that hormone levels were off. And the doctors advised us that it may be easier to let Nora pass than it would be to subject her to the full medical force of this day and age.

David Hirsch: So this is before she was born.

Adam Levy: This was before she was born.

David Hirsch: So a very high risk pregnancy from the very beginning.

Adam Levy: Every test that we took showed that everything other than her birth weight was fine. There was no real explanation. Lauren could feel this little fighter kicking and punching inside of her really early on, and now that we know how small she was when she was born, it’s incredible.

David Hirsch: She was literally just over one pound?

Adam Levy: Yeah, she was one pound three ounces. She fit in the palm of my hand, and my wedding band fit up to her shoulder, and it fit over her ankle, up to her knee. We weren’t allowed to hold her for the first several weeks because she couldn’t maintain her body temperature. Her skin was so thin, and she had so little substance, that she would risk losing her body temperature if we took her out of her isolette.

David Hirsch: She’s a miracle baby.

Adam Levy: She is a miracle baby so many times over. And I remember being so frightened when we were going into the delivery. Lauren was really sick. Her blood pressure was really high, and there were concerns that she was going to have a seizure. They were monitoring her really closely, and in the last several days she had gained 20 pounds of just water weight, and so she didn’t look like herself. She didn’t feel like herself. I didn’t know what was going to happen to Lauren, and I certainly didn’t know what was going to happen to this really premature kiddo.

I remember going for a walk, trying to clear my head and get a little bit of perspective on everything. I just tried to focus on three things coming out of this because I knew I had no control going into it. And the three things that I asked for was that Lauren and I would make it through this together, and that whatever the experience, it wouldn’t bring us apart, but it would bring us closer.

I asked that there’d be something I could take from this experience, no matter how it turned out, I wanted this to be meaningful. I didn’t want to be a victim of whatever it was that was happening. And, I’ve always felt so lucky that I have a little bit of my Poppy Allen that way, that I can find my happy, make jokes and enjoy my life and love people, and not take myself too seriously. And I was concerned that this situation, these next several months or years, might impact that. And so one of my final thoughts before Nora was born was just to hold on to myself through the whole process.

David Hirsch: Very powerful. I imagine it brings back some very deep feelings, to put yourself back in that situation. It was only four years ago. It was not that long ago.

Adam Levy: Four years ago, right. And I remember those thoughts. I mean, my thoughts are so different now in terms of what I focus on throughout each day. But those thoughts carried me through the first two years of Nora’s life. I didn’t answer your question, I don’t think.

But Nora was born as perfect as a severely growth-restricted child can be. She was breathing on her own. She did not require ventilation. She was really incredible. Those little lungs were super powerful. I remember going on a run in the heat of summer. She was born July 15, 2014. I just again was trying to get some space and I was breathing in this hot air thinking, “I’ve got nothing to complain about. This kid is running a marathon every second of her life,” with what it must’ve felt like for her to breathe at that size.

She did remarkably well. There were some complications with her growth as we went on, but nothing that was altering her path. She was really bright. She was really communicative. And then two days before her incident, the doctor said, “Congratulations.” And we said, “What do you mean?” And they said, “You guys are going home. She’s doing great.”

David Hirsch: So this is like close to her delivery date, what would’ve been the delivery, at about four months.

Adam Levy: Exactly. Exactly. And two days later, Nora was in Lauren’s arms and something happened inside of Nora. It was a twisting of her intestines. It still remains unexplained, but that’s called a volvulus. We didn’t know what was happening, but the blood supply throughout her intestines was being cut off and it was rapidly killing her intestines. So this happened at three in the afternoon, and by about midnight, the doctors pulled us aside and said, “If we don’t perform an emergency bedside surgery on your daughter, she’s going to die.”

David Hirsch: Oh my God. So here you’re thinking we’re going home. Just a day, a couple of days away maybe, and then this situation erupts.

Adam Levy: And signing those papers to let them do exploratory abdominal surgery was one of the hardest things I’ve ever had to do. I just thought, “This is the last thing anybody wants for their kid.” And she was doing so well. It was holding on to that thought, after all she’d been through.

But she made it through that surgery. There was another surgery 12 hours later. And then three months later there was a third surgery to put her intestines back together, and soon after that she was released home.

David Hirsch: So that’s the first time that she would have left the hospital after seven months.

Adam Levy: Yeah, seven and a half months.

David Hirsch: Did you guys feel like you were living at the hospital at that point?

Adam Levy: We were living at the hospital. We had the senior spots, Nora had the senior spot. We had a rotation between Lauren, myself, and the nursing team that we had been lucky enough to be teamed up with and to cultivate relationships with. Nora was a pretty popular kid at that hospital, and it was evident to us that it was time for her to go home. She was getting bored and she needed more stimulation. She needed to get to the outside world.

David Hirsch: So she goes home at seven months, and then what transpired?

Adam Levy: We were home for six weeks, and life was as close to what we expected normal to be, having less bowel than she started with. Digesting food was a challenge, and growth was a challenge, and we got some second opinions. And one of the doctors strongly advised a surgery to place a central line into Nora to help her grow. When we did that surgery, through unexpected complications, that resulted in severe global brain damage for Nora.

And that really altered Nora’s life more than anything at her past. She was put into a medically induced coma, and she started to have seizure after seizure after seizure. Which is why they had to induce the coma—in their terms, hit the reboot button in the computer, the human brain.

So what we would see for the electrical activity during the ten days that she was in that coma was a flatline monitor with one blip, and that one blip was brain activity. And they shut her brain down to the point where the electrical activity in her brain looked like a very, very slow heartbeat.

That was incredibly frightening. And those nine weeks at the pediatric intensive care unit, which of course was our a second stint in an intensive care unit, those were the hardest, most complicated, most exhausting and defeating days of our lives.

Nora was eventually released from the hospital. They were starting to get those seizures under control. She was on nine antiepileptic medications when she came home. Maybe it was seven. And she started to make progress in the first couple of weeks, and then soon after that, right around my birthday in August, she started to regress.

We didn’t know what was going on, and the epileptologist we were seeing didn’t know what was going on. And we sought a second opinion, and Nora was diagnosed with infantile spasms, which is a particularly debilitating form of epilepsy. It makes the brain’s electrical activity so chaotic that it’s impossible to determine what kind of stimulation is happening in the world visually, auditorially, sense of smell, touch, taste.

And kids that are progressing along, they stop learning how to sit, and they stop learning how to roll over. Nora was having these horrible seizures where she would scream and shriek for anywhere between five minutes and 60 minutes, and there was nothing we could do but hold her while that was happening.

David Hirsch: And how old is she at this point?

Adam Levy: She was just over a year old. We had a lot of things to tackle at that time. And it would be another year before Nora smiled again. We lost that beautiful smile for a year. We lost any recognition of who we were in Nora’s eyes. We lost eye contact. We lost any kind of progress she had made in all that time before.

David Hirsch: Those seem like some pretty dark days.

Adam Levy: They were really dark. And because we had a central line and we couldn’t socialize, she didn’t meet her cousins. She was two years old, and we couldn’t be exposed to any kind of germs or bacteria because she was so fragile.

David Hirsch: So was she in the hospital again?

Adam Levy: She was home. We were running a modified intensive care unit at our house. Sleep was hard to come by, but coordinating Nora’s care with all her medications. With her short gut, it meant that at the time she had up to 20 dirty diapers a day. And making sure that that is very separate from the line that connects right into her heart was a major priority for us.

David Hirsch: It seems very intense.

Adam Levy: It was very intense.

David Hirsch: Like you said, not getting a lot of sleep. You have to have this hypervigilance to be doing everything just right. And it seems like it would be very stressful.

Adam Levy: And then every time she’d wake up, she’d have these screaming seizures when her brain was most vulnerable. I was going between sleep and awake, and there’s nothing we could do.

David Hirsch: So I’m thinking about advice. What type of advice did you get early on from the pediatricians or the surgeons that helped you and Lauren cope through the situation?

Adam Levy: The best advice I got, which is still the thing I continue to think about all the time, is just to be present with Nora and to appreciate Nora and each other. The idea that we have some sense of what’s going to happen tomorrow, or that we should think about where we were yesterday, doesn’t do much for appreciating where we are right now and for dealing with where we are right now. Nora’s epileptologist was into a lot of the Buddhist teachings and certainly imparted on me in my time of most need as being present was the best thing I could do for Nora and for myself and for Lauren.

David Hirsch: That’s pretty powerful, and it’s a good lesson for all of us to try to put the past behind us and not get too far ahead. I think about it as, don’t preworry your worries.

Adam Levy: Yeah, exactly.

David Hirsch: You can’t control the future. And our minds, I think just because we’re all human, sort of catalog all the worst things that can happen, many of which never come true. And the energy we spend, the time we spend, contemplating the future can be unhealthy.

Adam Levy: Completely.

David Hirsch: Not that you shouldn’t plan ahead. You need to be thinking forward, but don’t get drawn too heavily toward all these different outcomes.

Adam Levy: Yeah, I couldn’t agree more.

David Hirsch: So what were some of the more important decisions that you and Lauren have made raising a child with special needs?

Adam Levy: Lauren and I took some different decisions to get Nora medically under control, and we were lucky enough to have a medical team in place that believed in us as parents and that were willing to think outside of the box in order to help Nora.

Sometimes I think parents of kids with special needs or kids with medical complexities are given the choice between a certain terrible outcome and an unknown trial treatment, and it can be really difficult for a medical team to advise using something that is unknown, that has risks. And we just looked at that situation and thought, we know what the risk of doing nothing is, or staying the course, and that’s completely unacceptable. So we have to take some unknown risks to hopefully make an impact on Nora’s future.

And Lauren is an incredible partner for me and the best advocate for Nora. And together with her, we were able to make some medical decisions that allowed Nora to come around, for her brain to settle, to get her epilepsy under control, and to allow Nora to roll over and crawl. And three months ago she started walking. You and I discussed what it means to be independent.

At my dad’s 65th birthday last month, it was really important for him that Nora was there. We drove to Highland Park from the city. It was a long car ride and Nora was antsy to get her legs moving. It was a small restaurant with about 50 people there, so I plopped Nora down once we got to the restaurant. She just took off walking kind of like a pinball in a machine where all these giant figures beside her would show up, and she would turn the corner.

She was so happy, and to see her experience the world literally not in my arms, was…I don’t know how to describe how proud I was and how grateful I felt to just watch her approach the world all by herself.

David Hirsch: That sounds like a surreal experience.

Adam Levy: It was surreal. Yeah.

David Hirsch: So what are some of the biggest challenges that you’ve encountered—not that you haven’t made reference to some of them—whether it’s personal or psychological?

Adam Levy: Sure. I can think of many. Getting over who my child was going to be or was supposed to be was really difficult, and it’s still difficult. It’s not difficult to appreciate who my child is and all the impact she’s having on the world. But I really wanted to know what that kicking, fighting fetus was going to say to me when she finally emerged out of the NICU, and was growing big and strong, and I was ready to get my ass kicked by her. And I do!

David Hirsch: Just a different way.

Adam Levy:  I do. But it’s been more babble and less words. She’s really strong, so if she lays a hand on you, you gotta watch out. That was hard. It’s obviously hard watching people you love and people that you anticipated growing up and raising a family with in tandem, seeing them experience a world that you envisioned experiencing yourself.

It’s hard watching your loved ones be so hurt by the situation that you’re in. Then it’s really hard to manage Nora’s care team. Nora’s therapy schedule becoming increasingly more manageable, but it still requires a lot of precision and a lot of effort.

David Hirsch: So what impact has Nora’s situation had on the rest of your family?

Adam Levy: Oh, man. Well, I mentioned to you that that kid’s cackle is like the most infectious giggle and laugh that exists, and she brings a ton of light. In spite of all the nightmares that were in the beginning of our story, we feel so lucky to be where we are and be with the kiddo that we have.

I think our family feels the same way. I think everyone sees that Nora’s spirit is the guiding force behind the nonprofit that we started. And she’s the reason that people are going to be seen differently, and people are going to treat each other more kindly and look to understand each other’s stories a little bit more than they do today.

David Hirsch: Well, let’s segue into talking about the Nora Project, a not-for-profit organization teaching empathy in elementary school classrooms by sparking friendships between students and their peers with disabilities. Tell me something about the Nora Project and how it came about.

Adam Levy: When we were at the PICU in Nora’s second intensive care unit stay, we got the results of her brain image three weeks after the complication with surgery. I was with my brothers, and we were watching a Bulls game. And we were hoping for good news and expecting good news, because with her brain image three weeks prior to that, the notes on the scan said it was remarkably well-developed normal brain, particularly given the circumstances surrounding her first seven months of life

Well all right, this kid is maybe going to escape with her brain fully intact. But what we saw on that MRI result was lots of pockets of fluid where there used to be brain diffused throughout her skull, and we understood that she’d lost a lot of brain—and the doctors were hesitant to come and tell us about it.

So it was about nine o’clock at night when they finally came in. Lauren had to leave the room, and she called her best friend and cousin Amanda. Amanda asked if she could do a fundraiser to help. Lauren said, “That’s not what I’m thinking right now. I would just love for people to understand that Nora is a hero and to understand what she’s been through. I’m so nervous that she’s not going to have friends. I just want my daughter to have friends.”

Lauren Levy: I could hardly stand as the doctor showed us what had happened to Nora’s brain. it was clear from everything he was saying that she would face many medical and developmental challenges. I had to excuse myself from the room. I called my cousin Amanda.

Amanda: My cousin called me sobbing. She was afraid that people wouldn’t see Nora when they looked at her. She was afraid that people would think she was scary or weird or less important than they are. But most of all, she was terrified that Nora wouldn’t have friends. She just kept saying over and over again, “I hope Nora has friends. I hope she has friends.” At a loss, I asked her what I could do.

That’s when she asked me to teach my students about kids like Nora, about the obstacles they face and how their differences don’t define them. She wanted me to help them understand that kids with disabilities and medical challenges have amazing stories, so they’ll see them for the truly special people that they are.

Adam Levy: And Amanda took that bit of inspiration and created a year long curriculum to teach her fifth grade students at Glen Grove Elementary School in Glenview, Illinois, about people like Nora and about their journey and how to relate to them.

Students: Hi, my name is Patrick. My name is Joelle’s. I’m Delaney. My name is Henry. My name is Grace. My name is Jessica. My name is Damian. My name is Shea. My name is Jocelyn. And we are part of the Nora Project. The Nora Project is important to us because we can put ourselves in the another’s shoes. We can build friendships with kids who have special challenges and understand our differences.

David Hirsch: So how does that curriculum work?

Adam Levy: Lauren would be able to explain this ten times better than I would. She speaks so brilliantly about the Nora Project. But the curriculum is broken out into four different phases, and the students in groups of five or six are paired with their Nora Friend, a child in the community with a disability or a child with special needs. And they learn about that individual’s story, their Nora Friend’s story.

They prepare to have visits with their Nora Friend. What kind of ways does this person like to interact? What kind of ways do they not like to interact? Might they be overstimulated with too much light or too much sound? What kind of environment can we create to make our friend comfortable and connect with our friend? They eventually interview people closest to their Nora Friend—therapists, family members, doctors, whoever the family provides—and they gain a larger sense of this individual from their people.

And then in combination with the visits and the interviews, they create a documentary. It’s usually about seven minutes long, and that’s the capstone of their project. And the documentary is made by the students, these fourth or fifth or sixth grade students, about their Nora Friend. And the footage is remarkable.

Students: We choose to be kind of William and treat him like our own friends. William is a special boy and he deserves respect like all of us. It’s really fun just to make people who are different than us smile. We can still be friends with them, no matter how different they are.

David Hirsch: Oh my gosh. These are fourth, fifth, and sixth graders getting this type of experience. It’s like amazing. It’s amazing.

Adam Levy: Yeah, it is. It is. You’ll be crying, and you’ll be feeling so good at the same time, and it’s become clear to us that if you offer a child a platform to do good, they are so excited to do it. And they far exceed any expectations you might have had when you provided that platform.

Students: The day we saw William on his communication device, we had a lot of fun singing and watching him learn. It was cool to see him communicate in a new way. He will never be scared of anyone or anything, because he will always know that we will be there for him.

Adam Levy: When I first saw this, I could not believe what I was seeing, and I was so skeptical. I thought, are they putting this on? Is there somebody in the background coaching them? And video after video, I saw the same outcome. The kids were just really excited to meet their Nora Friend, these people they’ve been studying.

And these Nora Friends become sort of celebrities, which is an indirect outcome and an indirect positive result of this project. We wanted to shed light on people who are typically relegated to the shadows, whose stories aren’t told about, who may not be able to ever tell their own stories.

But the kids took it a step further. They really made them celebrities. And at the end of every school year, we do a red carpet film festival and it’s called Nora Night. It happens in each participating school. In the first year, there was one school. Next year there’s going to be 32 participating schools.

David Hirsch: Are they all here in the Chicago area?

Adam Levy: Many of them are. There are some in Atlanta. There are some in Michigan. There are some in Maryland, but primarily we are in Chicago. It’s where we can best deploy our resources and make sure that this experience is as good as it can be.

David Hirsch: That’s just awesome. I just love it.

Adam Levy: Thank you.

David Hirsch: We’re going to have to do another interview like two, three years down the road, to see where this is all going.

Adam Levy: Absolutely.

David Hirsch: So what role has spirituality played in your life?

Adam Levy: That’s a great question. I don’t consider myself a very religious person in any typical sense. I am very culturally Jewish, which to me means family and friends kept close, opening your arms to the world, to try to take care of anybody that you may be able to serve.

But I’ve found what means to me in this experience, and what I take with me, is spirituality to me is community. It is people, whether they are praying or thinking or doing, or just being in your corner. The power of having a community of people directing attention, either in your direction in your time of need or your child’s time of need, or gathering resources to make sure that you are well fed and cared for when you can’t roll out of bed because your kid’s been in  a coma for the last eight days. I found there to be something larger in that, in the power of community.

David Hirsch: That’s awesome. So why did you agree to be a mentor father as part of this Special Fathers Network?

Adam Levy: One of the three things that I thought about before Nora was born was creating meaning out of the experience. All of the things that we’ve gone through, if I just tucked them away and didn’t share the lessons learned, or didn’t embrace the ability to serve another individual or another family with what we have experienced ourselves and what we’ve been given, I don’t think I’d be living that one ask of myself at that time, which was create meaning out of this experience. The ability to sit down with another individual or get on the phone or provide a text or email support, whatever the situation may be, provides so much value to me personally and so much meaning to my experience. I am so honored to be included in this remarkable group of fathers, and I’m so touched that you wanted to meet me and speak with me, and yeah, this is a really big thing for me.

David Hirsch: Well, let’s give a shout out to our mutual friend Jonny Imerman for introducing us.

Adam Levy: Yes, absolutely.

David Hirsch: The mayor. You might know that the Special Fathers Network is modeled after Imerman Angels. They have 8,500 cancer survivors, the Angels, who’ve been matched 35,000 plus times with cancer fighters.

So what we’re trying to do is build this group of mentor fathers—it’s at a hundred plus today—get that up to hundreds, and if it’s meant to be, thousands. And then match those dads like yourself with experience to provide these younger dads who are closer to the very beginning of their journey raising a special needs child, with the thought that they’re not gonna offer medical or legal advice, but they’re going to offer this one-on-one experience. So I’m very thankful for your involvement in the Special Fathers Network.

Is there anything else you’d like to say before we wrap up?

Adam Levy: No. I just want to thank you for this opportunity. I’m really excited about the work that you’re doing and the work that the Special Fathers Network is doing. And I couldn’t be more honored to be included in this group.

David Hirsch: So if somebody wants information on the Nora Project or to contact you, how would they go about doing that?

Adam Levy: Our website is thenoraproject.ngo. If you just google Nora Project, you’ll find us, and there’s an email address that will make its way over to me if you mention you want to speak to Adam. I encourage you to check it out, it is really powerful stuff.

David Hirsch: Well, what I’ve learned is it’s very inspiring and you’re off to a great start. Adam, thank you for taking the time and many insights. As a reminder, Adam is just one of the dads who has agreed to be a mentor father as part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

Adam, thanks again.

Adam Levy: Thank you.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers. Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids.

If you’re a father looking for support, or if you’re a dad who’d like to offer support, go to 21stcenturydads.org.

David Hirsch:  And thank you for listening to this Special Fathers Network podcast, stories of fathers helping fathers.

Tom Couch: The Special Fathers Network podcast was produced for 21st Century Dads by Couch Audio. Again, to find out more about the Special Fathers Network, go to 21stcenturydads.org.