013 – Special Father Jim Mueller tells of raising a quadriplegic son with Cerebral Palsy.

Transcript:

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. David’s guest today is Jim Mueller. Jim and his wife Margot are parents of three children, Jessica, Lili and Luke, who was born as a spastic quadriplegic with cerebral palsy.

David Hirsch: What was the most important gift you think Luke provided you, or your family for that matter?

Jim Mueller: A lightness and laughter.

Tom Couch: Jim tells David of his journey raising a special needs son and how it helped enrich his life.

Jim Mueller: Mine was just keep focusing on Luke and the joy of having him in our lives. He is just such a wonderful kid and such a joy to have.

Tom Couch: Sadly, Luke passed away in December of 2016, but the Mueller family moves forward, and Jim shares some of his many insights he learned from being Luke’s dad.

Jim Mueller: I’ve learned through 20 years of raising Luke that there is hope and there is joy in having a child with disabilities that others don’t have the privilege of knowing.

Tom Couch: So let’s get to it. Here’s David Hirsch’s conversation with special father Jim Mueller.

David Hirsch: I’m thrilled to be talking today with my friend Jim Mueller, who lives in Delray Beach, Florida. Jim, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Jim Mueller: You’re welcome.

David Hirsch: You and your wife Margot are parents of three children, Jessica, Lili, and Luke, who was born as a spastic quadriplegic with cerebral palsy. Let’s start with some background. Where did you grow up? Tell me something about your family and growing up.

Jim Mueller: That’s fine. First, let me say, and I know you probably get kudos all the time, but what you are doing in the Special Fathers Network that you’re building is extraordinarily important. I think especially for younger dads who encounter these challenges early on in their lives, and they’re struggling not only with, “How do I become a father?” but, “What do I do with a child who has these impairments? How do I respond? How do I relate?” So I think this is really an extraordinarily useful program.

So I grew up on a dairy farm in upstate New York, 500 acres, nestled in the Mohawk Valley, middle child of five children. So of course, I was never fully appreciated.

David Hirsch: The middle child syndrome. I understand that.

Jim Mueller: So I grew up there, ended up going to Cornell. And my dad died when I was 17, in July, between my senior year and my freshman year. So we had a very difficult time. We had to sell our farm. I was involved with my brother in just a small tractor accident, but he broke his leg, so he was laid up in the hospital. I was going off to college. And it was either stay and run the farm or go to college.

And my mother told me that my dad would not allow me not to go to Cornell. That I needed to do that and not try to save the farm. Because I think she was also very tired herself. So I was off to Cornell.

David Hirsch: So you went to school at Cornell. What did you major in?

Jim Mueller: That took me a little bit to figure out. I graduated at the end of the day with  a degree in education and communications.

David Hirsch: So from college, where did you go from there?

Jim Mueller: I actually went to seminary. I went off to Fuller Theological Seminary in Pasadena, California. And after a year there, I got an internship at a church in Oneonta, New York. And while I was at that church, I figured I would want to stay in the Northeast. So I made a change and went off to Gordon Conwell Theological Seminary in South Hamilton, Mass. And I had some trouble with the conservative values and beliefs.

So I ended up going into the Biblical Institute that I could access through Gordon-Conwell and ended up taking courses at the Episcopal divinity school in Cambridge and Andover Newton School of Theology out in Andover. So it was a very rich experience for me, and I finished with a master of theological studies in 1979.

David Hirsch: Okay. We’re going to come back to your career. So I just want to go back and talk a little bit about your family. Your dad died when you were 17, and sort of a big turning point for the family. It sounded like it was, because you’re the middle child, you were going off to college, you had two younger siblings and two older siblings for that matter.

When you think about the relationship with your dad, even though he didn’t live past your age 17, what are some of the stronger memories you have, or what are some of the takeaways that you have from your dad? Either something he said or something he did that you know is sort of giving you some direction?

Jim Mueller: Well, I actually had a very difficult relationship with my dad, and my mother as well. There was just some abuse and some emotional situations. He died of his third heart attack at 44. So he had a good sense of humor, and there were the good times, but there were also the times that just really colored my development as I left home and was kind of glad to leave home, frankly.

And my mother also had some real issues. It wasn’t all bad. We had wonderful family experiences beside that. My dad was very creative. So what did I take away from my dad? He was a tremendous entrepreneur, inventing things constantly to help modernize and innovate dairy farming.

David Hirsch: So let’s go back to your career. It sounded like you were tracking pretty strongly to go into the seminary with the education that you got. What type of career did you pursue once you were done formally with your education?

Jim Mueller: And what was most interesting about my seminary education is, as I grew intellectually, I realized that Christian theology was too constrained and too isolationist.

There were creeds that one needed to sign in order to continue in seminary, which I felt were exclusive of people and other points of view and belief. I graduated magna cum laude, but I remember my faculty professors arguing with me about my choices and my positions on theological issues. I had one faculty member tell me, I don’t want to give you this grade, but I’m compelled by the amount of work you did that I must. But you have to be careful.

David Hirsch: That’s wild.

Jim Mueller: Yeah, it was. It was good. Maybe that’s my dad’s independent streak, not following convention. I was much happier. I learned a lot in seminary in ways, again, what one shouldn’t do more than what one should do, because then I got into the Eastern religions and followed some of those paths for years.

But my career wasn’t related to that. When I left seminary, I was just kind of questioning. Well, this didn’t work out. What am I supposed to do? I went back to Cornell, and applied for a position in the cooperative extension program in the youth development division, and was working as a staff associate in program development for youth. So there was the 4-H program. Some people are familiar with that. I did that for three years, and one guy who really helped me, I considered him a mentor at the time, he helped me a lot in and gave me opportunities and listened to me as I was struggling with things.

But he helped me move to the next position, which was at the university level, which was quite a jump up through in my career, quite an opportunity. This was Associate Director of University Alumni Class Affairs. I ran Cornell’s reunions and Cornell’s homecomings. It was really challenging and fun and energizing.

And from there, my mentor then was the director of the university’s regional offices, which were around the country and internationally based. And so he hired me as the director of the Midwest office, which was a tremendous opportunity. And it’s basically Cornell’s presence with alumni, donors, corporations, public relations, and some degree of student recruitment, throughout the Midwest, from Kansas City to Minneapolis, including Milwaukee. Obviously I was in Chicago.

So that was a tremendous experience, a learning experience. So after 10 years with Cornell, I went off to Northwestern University to be Director of Development and director of a $30 million fundraising campaign at Northwestern University. And from there I was off to a healthcare system.

And I went to Advocate Healthcare, in their brand new bioethics center. And I did that for eight years. It was a tremendous experience, some international experience, helping people understand how to make decisions in tough times.

So we worked around issues at the beginning of life and the end of life. Do you end the life, or do you sustain it? Where is meaning in all of this? Same with abortion or birth of a child the mother doesn’t want. And from there I went to be Vice President of Enterprise Advancement at Lake Forest Graduate School of Management. And from there I did a short stint as Executive Director for Goodwill Industries in metropolitan Chicago and northern Illinois.

Learned a lot about an underclass that we often don’t see. I went to Grenzebach Glier after that as chief operating officer in Grenzebach Glier. I met Jim Pallia, as I was chief operating officer of this firm, which was consulting around the globe. From there, I came to Florida and started my own consulting practice, which I started in 2005.

So I’ve had my consulting practice, which works in the area of governance, organizational development, strategic planning, and also to some extent fundraising. And so that’s where I am today.

David Hirsch: Outstanding. Well, thank you for recapping your career. I know we talked about some of that, but not all of it. So it’s very enlightening.

What I’d like to do is shift gears. Let’s talk about your connection to the special needs community, first on a personal level, and then if you will, beyond. So Luke was born, was it 25 years ago?

Jim Mueller: Wow. 1995. So 23 years ago this July. He was born on our wedding anniversary.

David Hirsch: Wow. And he would be considered your middle child. Jessica is about a decade older, and then Lili is 16 now. So what was your first reaction upon learning about Luke’s diagnosis?

Jim Mueller: Well, Luke’s godfather was my best friend, and it’s a little interesting. I should talk a little bit about that experience. Shortly before Luke’s birth, I started to read a lot about the experiences of children’s out of body experiences. It was by a physician and I can’t recall his name, because he had this experience with a child who told them all these things that had happened while he traveled outside his body.

So he did a very rigorous empirical study about people…and he started with nurses, because nurses saw this all the time. Physicians were kind of blind to it, he said, but he started finding all these people, and the time from their out-of-body experience had to be at least a 10 year period of time, so they had objectivity.

He interviewed them on how what were the common experiences of these children. And out of that, I started to get a new perspective, because I was struggling with my beliefs about spirituality, because I kind of allowed religion to fall to the wayside.

Because I had rather jaundiced opinion of it over the years of going through seminary and seeing the lack of openness, and that it had to be these closed belief systems that were basically reflective of current cultural norms. So I had trouble with that. But that book, and knowing that it was this empirical study, just said wow, there is something more there. And that’s what attracted me into some of the other traditions.

I started looking at Buddhism, but I was kind of enthralled with Hinduism, and its richness and depth and its age. So I started following that. And from that I started looking into some yogis and started reading about their lives and their perspectives, and started to see that there were all these validated mystical experiences that people were having that were very spiritual, that were real, that they weren’t just in their imaginations.

And at that time, what was funny, my wife was artistic company manager for a performing company. But the founder and director of the company, his best friend was a clairvoyant healer. And so I met him. And Richard is the clairvoyant healer. He’s actually clairaudient. He and I struck up a wonderful friendship.

He had a session with me and told me these things that were so accurate about my life and told me about how things were unfolding. And I was so taken by that, that there was this other awareness of what life can be, that it’s not just in the physical realm. So he and I became good friends. And when Luke was born, I asked him to be his godfather.

Luke was fascinating. Margot started having contractions. This was at I think 30 weeks, and she started having these contractions. She thought they were Braxton Hicks. I said, “You better have them checked out,” and they kept getting stronger. So we went to the hospital. I was working for the health care system at that time, so I called the president of the medical association, because we had become good friends. And he said, “Go to the emergency room,” because we couldn’t reach her obstetrician.

So on the way to the hospital, her obstetrician calls said, “No, go right to the delivery room.” So we went there, and they discovered that Luke had his cord around his neck. And so they did an emergency C-section and brought me in. So I was right there. Within the next few minutes, the perinatologist had delivered Luke, placenta intact, with this beautiful white hair.

Just as she did that, Margot’s obstetrician rushed into the room. And the funny story about that is they reached her on the train as she was on her way to the hospital. And she got off the train near her office, and she flagged down a policeman who brought her to the hospital with full lights flashing.

David Hirsch: Oh my gosh.

Jim Mueller: And so she got there just as Luke was delivered. But he was wonderfully healthy at birth. He started crying right away and he peed on one of the nurses. So we were all very happy. About nine days later—we had been spending time with Luke day and night—but on Thursday night, we decided we just needed to get some sleep. So we called in early in the morning before we went over to the hospital, and we were told that there was a problem. We learned that he had blood in his stool and his stomach was seriously distended.

And when we arrived, it made us feel extraordinarily distraught to see that he was unconscious and pale. But we talked about what we would do, and we would listen to Luke signals to us. So as the day progressed and into the night, he continued to deteriorate. The x-ray showed that his bowel continued to distend in certain places, but it was healing in others.

And what was interesting is I was using the healing energy that I had been inducted into with Luke. And so it was touch and go. That was fascinating. They didn’t understand why part was healing and while other parts were deteriorating, but his heart and lungs remained strong and his brain was free of problems.

So the surgeon was hesitant to operate. But by the following day, he decided he had to. And during that he removed three inches of Luke’s intestine and his ascending colon. So we stayed with him through the night, only to discover that his kidneys had failed. We met with a nephrologist the next morning, and he counseled us that Luke had little chance of surviving long enough for his kidneys to function again, because the failure of his kidneys was causing stress on his body, which was diverting energy away from his heart and lungs and brain.

So within the next few hours, that Sunday night, we had him baptized, and we told Luke that he could choose what’s best for him, whether he wanted to stay or go. And we stayed by his side and waited. That night we took a few minutes just to go out and get a pizza.

And within like 10 minutes of eating our pizza, we got a call from the hospital, from one of the visiting fellows, as I said, from India, who asked if we had permission to get a catheter in the Luke’s umbilicus, and that there was little chance of success, because alcohol had been applied consistently for 11 days and it was completely dried up. But to his surprise and amazement of all the clinicians, and that’s not an overstatement, everybody was quite surprised, he was able within five minutes to get the catheter in, and immediately gave him a blood transfusion.

So that that was kind of a turning point for Luke. But we still had the problem with his kidney not functioning. And so one of the residents came in one night and was wondering what to do. This is true. He put Luke’s hand in warm water, and his kidneys kicked in. They didn’t think they were going to kick in. So his kidneys kicked in, and because he had all these fluids, his body had become inflated, because he wasn’t passing any of the fluids. But it was that moment when the young resident put his hand in the water that his kidneys kicked in and he just peed. And that was it.

David Hirsch: Oh my gosh.

Jim Mueller: Yeah. That was an amazing and tremendous moment. So because we were there ready to let him go. I wish Margot were here, because she has such a great mind for details. She would share with you these extraordinary experiences, and I would say, “Oh yeah, that too.”

Well, over the next few weeks, Luke just developed and was beginning to thrive and doing fine, and then suddenly after three weeks, they discovered all these cysts in his brain, due to the infection and the broad spectrum harsh antibiotics that killed the brain cells.

So it was very interesting. At that point, we saw a neurologist who said, “Well, you’re probably best if you just put him in a special home somewhere, and allow them to take care of him, because he’s going to be all of these terrible things.”

What was interesting is before I had the conversation with the neurologist, I’d talked to my friend Richard, Luke’s godfather, and I said, “We’re going to have this conversation with this neurologist.” He said, “Well, don’t listen to him.” He said, “Be polite. Let him say what he believes and move on.” And that was such wonderful advice, because what this physician was telling us was all these terrible things of what Luke would be. And those things did not come to pass.

And Luke just became this wonderful young man. Although we were able to get him to walk when he was little, as he grew he stopped being able to walk with assisted walking. We tried to teach him how to feed himself when he was young, but he just didn’t have the motor control to feed himself. And he did have deterioration of the optic nerve. The neurologist said he’d be cortically blind, is what he called it.

Well, Luke kind of didn’t follow that pathway. I should also say, it was funny, after three months in the hospital, Luke decided to get up on his hands and knees and look around. And so during the next week, I was with Luke at sunrise and sunset. It was a new moon. And the idea was that at sunrise and sunset, I was with Luke using this healing energy that I been inducted into.

So, for 30 days we did that. And then on the 63rd day in the NICU, on September 21st, which was three days before his due date, he came home with an ostomy bag and an apnea monitor to make sure that he didn’t have breathing problems at night.

So after about four weeks at home, we took him to another neurologist, and the first thing he exclaimed is, “This baby sees.” And the main issue was Luke’s head growth, because the neurologist at the hospital, the neurosurgeon, had told us that he was going to be blind and he wouldn’t be able to see, because his optic nerve was also deteriorated. But somehow Luke was able to see. And even though he had a small head, he was a handsome dude.

A few weeks later, we had the ostomy reversed. And there were no seizures. His movements were normal. And he had this special, special smile, and that laugh that just kept everybody. So even though he was three pounds in the hospital, within his first four weeks at home he was already nine pounds. So that was Luke’s birth.

David Hirsch: That is an amazing story. He is a miracle baby.

Jim Mueller: Yeah.

David Hirsch: I’m dumbfounded. So that was a quite a journey the first two months of Luke’s life, because he was so premature. He was so small. There are all these complications. It must’ve been a roller coaster ride, physically and emotionally, for you and Margot those first two months. When you look back on it, how was it that you were able to put it in perspective and sort of persevere through it all?

Jim Mueller: Yeah, I’m sure Margot has her perspective, but mine was, you just keep focusing on Luke and the joy of having him in our lives. He’s just such a wonderful kid and such a joy to have.

And at that point, just holding him was wonderful. So, you’d take it a day at a time, and being in his presence, I was happy enough. So I’m not sure we looked at the problems as much as just being with him in the moment and accepting the challenges that came with that.

David Hirsch: So when you look back, not over that period of time, the first a couple three months, but the time thereafter, talk about some of the more important decisions that you and Margot made over the course of the next couple of years.

Jim Mueller: I think one of the most important things we did was that Margot stopped working. She devoted herself fully to Luke, while I continued to work. So she was really his main caregiver.

And she became an expert on everything, all of his conditions. She was an expert. She knew the terminology. She knew the law. She knew what we could get for him. She was his extraordinary advocate. And at one point I joked with her that she should form a new club called BAM, which is Bitch Advocate Mothers. It might sound a little harsh, but it was the idea that no matter what anyone says, you’re an advocate for your son, and if you’re well-informed, you can be that person.

I mean, she was far more informed than I and was constantly filling me in and helping me along. But the challenges were making sure he had the right doctors. I mean, we went through several doctors until we found ones that were just the perfect fit.

But by Margot’s example, I should say, I just supported her. And you knew when you had the right physician who connected with Luke, who cared about us as a family, and was willing to work with us and talk with us and be more than a technician of medicine, but truly to be a physician. That helped a great deal.

The challenge was around his feeding. Since early on it was clear that even though we started with him learning to feed himself, he reached his limit of neuro motor development. And as he grew, he couldn’t feed himself.

Also, as he grew, he stopped walking assisted and had to be in a wheelchair. Those things are very hard, because we’d hoped he would be able to navigate by himself. So getting him the technological support and getting him the educational support.

We disappointed several principals by understanding the law, and what we were allowed to ask for, and insisting upon it, helping them understand that inclusion was more important than rote learning. So Margot was just an extraordinary advocate. Again, as a dad, I was far behind her, but learned a lot from her and was with her every step of the way.

David Hirsch: So you didn’t always live in Florida?

Jim Mueller: Right.

David Hirsch: Luke was born in the Chicago area, is that correct?

Jim Mueller: He was born in, at that time, it was Lutheran General Hospital

David Hirsch: In Park Ridge. Why is it that you chose Delray Beach, Florida?

Jim Mueller: Oh, that was for Luke. He was going through a time. He just couldn’t take the cold as much. So I just poked around looking for an opportunity to move us here so that he could thrive.

David Hirsch: So how old would Luke have been at the time that you moved to Delray Beach, Florida?

Jim Mueller: Let me see. We moved here in 2005 so that was what, almost 15 years ago. Luke was 10 years old.

David Hirsch: Okay. And, had he been going to school then? Was he included in classrooms?

Jim Mueller: Yeah, up north he was very much, and Margot did all the research down here to find the right school. And it’s very hard, because schools down here are very different. When we lived in Chicagoland, each town had its school system pretty much. They were small school systems, and they’re more personal.

Here, all of Palm Beach is one school system, so it becomes very impersonal, very rote. So instead of looking at the school system, you look at the principal. What’s the culture that the principal is developing at the school?

And we move Luke through one, two—in the second school it worked out really well, because he also had an aide who was a perfect match. So one, two, three schools. Yeah, in just elementary schools, we went through three schools with Luke finding the right match, and that worked out pretty well. And then when he moved on to high school, the high school was extraordinary too.

Boca High as an extraordinary school, and it’s because of the principal and the culture he sets. But having the right principal, school culture, and not stopping until you find it. Having the right education coordinator, you might call that, having the right aide for Luke, all of those things. We always made sure the match was right and didn’t settle.

And in addition to that, knowing Luke’s rights and being well informed about them and insisting upon them. Not everybody cares about your child as much as you do. And that’s why we came up with the idea of BAM, because sometimes you just have to make sure you’re heard on your child’s behalf, since they don’t have power.

David Hirsch: Very powerful. Margot just sounds like an exceptional mom. I know that they call them tiger moms, but not in this context that we’re talking about.

Jim Mueller: She’s the nicest person in the world. But she’s firm.

David Hirsch: Yeah, well, it’s like anything else. If you educate yourself and you’re knowledgeable, you have the ability to communicate accurately, and you’re not going to get pushed around or pushed off to the side, and you can fight for what you’re entitled to or what your child’s entitled to.

Jim Mueller: Exactly.

David Hirsch: So did Luke graduate from high school?

Jim Mueller: He did. He did graduate from high school. And slowly, he just couldn’t be at school, and so they graduated him, gave him a diploma.

David Hirsch: Okay. Well that’s quite an achievement.

Jim Mueller: Yeah. I’m not sure how much Luke cared about that.

David Hirsch: Well, how was he able to communicate with you? You said he was nonverbal, right?

Jim Mueller: Yeah. Well, he tried to form sounds. He tried to form words, and so we could somewhat understand him. We also got him a communication device so that we would, well, Margot, again, initially it was one of those big, large Dynaboxes that cost eight grand, and she would program it with certain phrases, and she would set it up so he could hit a switch.

So she would ask him a question, and if it was, “That’s the one I want,” for instance, he would hit a switch and say, “Yes, that’s the one I want.” So he was able to answer yes/no questions. And after the iPad came out, a lot of app developers for disabled individuals started producing applications obviously, apps that they could use to communicate.

So she got to know several app developers, and for the iPad it went from being $8,000 to program it to $800. And the apps were $8, $10, maybe $20, but the costs dropped a hundredfold once the apps came out, and the Apple devices came out, because you could hook a switch to the iPad and program it to be his communication device.

David Hirsch: Are there any communications when you look back, that you cherish more than any others?

Jim Mueller: I think there’s a couple of them. One of our favorite activities was sitting together watching action movies. And so we drove to movie theaters—Sunday mornings were best, because there weren’t many people. Occasionally even this was difficult for Luke because he had sensory integration issues that caused him to become disoriented when the noise was too loud.

There were times we didn’t make it to the movies, or we left early. And to compensate, we purchased a large flat screen TV and built up our action movie library. We had nearly 200. And so oftentimes when we watched them in the afternoon, on the weekends, he would dose off with his head on my chest. And even though we didn’t finish the movies, that was a really sweet, sweet time.

Luke was also well known at the local building supply store, where he made friends with many of the very kind people who worked there. He was always quick with a hi. He always said hi to people. He was very clear that that’s what he was trying to communicate. And it meant a lot to them. And Margot would find this humorous, because I would actually have conversations with people outside of work, which she didn’t think I was capable of.

Similarly, Luke had friends at Target. He enjoyed, as Lili calls it, the Target experience. And it was interesting that for Luke and his mother, this became a kind of a social experience. And one of the memories from there was Luke’s impatience. When a conversation with people went on too long, he’d start with a soft, “Hey,” a reminder that it’s going on too long. And if it went beyond that, he got loud. He wouldn’t be quiet until Margot stopped the conversation.

David Hirsch: I guess that would be a sign to Margot to be a little bit more quick to the point.

Jim Mueller: Yeah. But he also loved his music. I should just mentioned that. And the experience he had with his sister is perfect. If Luke was in the car, he was in control of what we listened to, and he’d get a very serious look on his face, and any selection that didn’t meet his approval, he’d let us know that’s not the one he wanted. Through some vocalization, it was very clear.

There were so many challenges, as you alluded to, and the pain associated with Luke’s physical issues. He would break down crying at times, and we couldn’t know what was wrong. And it was very hard to feel helpless in the face of all this.

And we’d say, “Luke, what is it?” And that became a common phrase of concern. And we’d look into his eyes and try to figure out why he was upset. And without hesitation, we would start doing what we do. It’s just like programmed into us. We’d check his body for injuries. We’d reposition him. We’d lift him out of his chair, over our shoulders, to see if he had gas, or just hold him in our arms and walk until he was quieted—even as he grew older.

There were frustration times too, when he demanded that we stopped doing whatever we were doing, no matter how important or urgent it was for us, to take care of his needs. And sometimes we lost patience. We raised our voices at times with Luke out of frustration. And one of those favorite memories actually related to that is, one time out of total frustration, one of us said, “Jesus Christ, Luke, what is it?”

And apparently that was one of the funniest things he ever heard. And he burst out laughing. If things got a little tense, we would just say that to Luke, and he would laugh, and we’d all follow suit.

David Hirsch: Yeah. Did he have any favorite music? Any favorite artists? Any favorite songs?

Jim Mueller: Yes he loved Avril Levigne and the Almond Brothers, certain songs. So he had a wide variety in taste over time. And Margot could tell you more of what his repertoire was. Because we actually had Luke’s own tracks. He had a Luke chill track, which we knew would calm him down. We had a Luke fun track, which would play in the car. So yeah, he pretty much determined what we would listen to. The music was very important to him.

David Hirsch: Yeah. Well, it’s great that you found that, because it added some peace of mind, probably to the whole family when you were traveling, like you were saying, when you’re all in the car together.

Jim Mueller: Yeah.

David Hirsch: Well, sadly, Luke lost his battle. Was it December 2016?

Jim Mueller: Yeah, it was a year ago and a few months. Seems like it was yesterday.

David Hirsch: What were the circumstances? Was it something health related or otherwise?

Jim Mueller: His body just deteriorated. It started deteriorating. He was in hospice for a year and a half, from July 2015 to December 2016. And his systems and organs started to shut down, and he just melted away from our lives over the course of the year and a half,

David Hirsch: That must’ve been very difficult for both you, Margot, and the rest of the family for that matter.

Jim Mueller: Yes. I would say it’s the most extraordinarily difficult thing I’ve ever faced.

David Hirsch: Well, I can’t even imagine. So I’m thinking about, Luke’s sisters. Jessica, who is older, who was a part of Luke’s life, but more so for Lili, your younger daughter, who’s 16, who only knew Luke, right. Because she was quite a few years younger. So what type of impact do you think Luke situations had on Lili?

Jim Mueller: Pretty extraordinary. She never finished reading him the book she was reading when he died. And that’s very hard for her. I think it can be captured in this. She had a communication assignment, and at age 13, she wrote this poem called “My brother.” And I think this kind of captures it.

The constant pinging, equivalent to the annoyance of a seatbelt warning

The pinging of Wheel of Fortune and Jeopardy, and I still love you.

Your tiny nose, your tousled hair, and I still love you.

Your scar-covered skin from countless surgeries and operations, and I still love you.

David Hirsch: Wow.

Jim Mueller: I’m not done. I just had to take a break.

Your uncontrollable laughter whenever you hear clapping, and I still love you.

Your mournful cries in the dark, the cries due to your hatred of being alone, and I still love you.

Your different brain, the one plagued with cerebral palsy, but I and everyone…..

Wow. I thought this would be easier.

David Hirsch: Yeah. Well, it’s so powerful at age 13, it just shows a level of maturity that very few people at such a young age would possess.

Jim Mueller: The last sentence is, “But I and everyone who meets you still love you.”

David Hirsch: Wow, that’s amazing. Thank you so much for sharing. So what is a Lili doing now? She’s in high school?

Jim Mueller: She’s actually in college and high school at the same time. Obviously by her poem, she’s a brilliant kid. So she’s in 10th grade high school. That’s within Florida Atlantic University. So she’s taking freshman year courses. She’s already completed 22 college credits, and she wants to graduate with her high school and college diploma the same year.

David Hirsch: Oh, she sounds like a Doogie Howser type of person. Somebody who’s super young, who’s got this intellectual gift, and she just doesn’t want to go at a slow pace, what to her is a slow pace, to others might be a normal pace, through high school. And what do you attribute that to?

Jim Mueller: Her genes. We also encouraged her just to be awesome as she is, nothing else. And she changed schools a couple of times. We just empowered her to make decisions. She’s just so damn smart, and we didn’t want to hold her back and supported her along the way.

And the other thing that we found in Luke’s passing is there’s a grieving group. And our feeling was, we don’t want to stay in the grief. We feel it deeply. We process it, we share it, and we want to look toward the light, rather than the loss. It’s that sort of a thing for us.

David Hirsch: Yeah. Well, it’s a different process for everybody.

Jim Mueller: That’s right. Absolutely. I agree.

David Hirsch: You don’t want to pass judgment on the process that you know is right or it feels right for someone. And it’s great that you have identified what works in your situation and provides you with a peace of mind and the ability to move forward, right?

Jim Mueller: Yeah.  

David Hirsch: And it’s a parent’s worst nightmare to lose a child. And after decades of being there, you have this void, and what fills that void? I don’t know.

Jim Mueller: And I didn’t mean to imply that the grieving group was bad. It may have sounded that way. Not at all, because I agree. Everybody has to find their own way, as you suggested. And for some people, this is extraordinarily helpful.

David Hirsch: Yep. So what was the most important gift or gifts you think Luke provided you, or your family for that matter?

Jim Mueller: A lightness and laughter. Probably the best way to say it. He was all of that. And to see him go through what he was going through and to be present every moment. And to break us free from our own issues to see the light. I guess it sounds a little Pollyanna-ish, but that’s how I would describe it.

David Hirsch: If I can paraphrase what you’re saying, just to make sure I understand. Those challenges that he faced, the courage that he had, helped put some of the day-to-day things that we might get caught up with in perspective.

Jim Mueller: Yes. You should have answered the question.

David Hirsch: Oh, no, no. I’m just paraphrasing what I thought I heard you say

Jim Mueller: You captured what I was trying to say in a fumbling way.

David Hirsch: I think when you’re overwhelmed, and it sounds like maybe you weren’t overwhelmed every day, but there must’ve been some overwhelming experiences on a day-to-day basis, it’s hard to get distracted by the things that, I think distract us on a daily basis. Whether it’s the weather, or a small disagreement with a family member or a work colleague, or something that’s just seems to be going against you.

Jim Mueller: Absolutely.

David Hirsch: It’s like, well, that’s not really what’s important, right? You’re dealing with life threatening, life and death type of situations, and it’s the real deal. And I don’t know that the average person, the typical situation, is like that. And I think when you look back on it, maybe you don’t realize it at the time, but it’s a gift to be able to be focused and be present and be in the moment with greater clarity than you might have otherwise.

Jim Mueller: Yes. And there were moments of great frustration. There are many, many moments because of the stress of trying to figure out what Luke needed, the stress of his extraordinary needs for care, whether it was in the middle of the night or during the day, the limitations on what we could do as a family because of Luke’s extraordinary limitations, you know?

But we all adapted, and I think it was the strength of our family unit. That was our team. And that worked. That was our thing.

David Hirsch: So thinking beyond your own family, one of the programs that we’ve been talking about as the Embrace program at Florida International University. Tell me about this program for adults with developmental disabilities.

Jim Mueller: Yeah. They hired my firm to work with them on strategic planning. And what FIU Embrace is, is a program of Florida International University that is seeks to change the way neurodiverse or people with impairments, however you want to describe those individuals, are fully integrated in society.

Not only through the range of services they receive, but culturally. There’s a change in the ethos of culture, so that people are with impairments or who are neurodiverse are not seen as different. They’ve created the program on the university side to provide educational access for neurodiverse individuals, people with impairments, you might say. So they have access to the university by making the appropriate accommodations and providing safety and security so that they can access a viable education.

David Hirsch: Well, you introduced me to Nicole Atong, who’s the director of the Embrace program at Florida International University. And I don’t remember the specifics, but I remember her telling me that this is not a project that might come and go, but this is something that’s been budgeted in on an ongoing basis. What was that specifically?

Jim Mueller: The university supports this program and understands that it’s integral to our future. It’s not a project. It’s a university funded initiative and a commitment from the university to see it through to success, which is pretty extraordinary.

David Hirsch: Well, I’ll just speak from my own personal experience. I’m still on the steep part of the learning curve and have a better understanding and appreciation on a day-to-day, week-to- week, month-to-month basis for the challenges that exist in society.

And when I think about what we’re doing with the 21st Century Dad’s Foundation, with the Special Fathers Network in particular, is trying to bridge that gap of understanding, and the overall community, so that we have a heightened level of awareness and enlightenment about the different challenges that people face and accept that we’re all different. That’s sort of what defines us is our differences, and be more accepting about those.

So I applaud the work that Embrace is doing at Florida International University, and I’m hoping that it’s a tremendous success and it will be a beacon of light for other entities, educational, and other entities here in the US and beyond.

So I’m thinking about advice now that you might be able to provide. What are the most important takeaways that come to mind when you think about raising a child with differences, and for that matter, for dads who have a child with a physical or intellectual disability?

Jim Mueller: Completely fall in love with your child, without boundaries, without barriers. Don’t be afraid, because the gifts you will get from that relationship are sweeter than anything. I say, that knowing that with some children, that’s harder. I watch a friend who has a child with autism who acts out a lot. I don’t know how she manages, because he’s aggressive, and it’s just in his DNA, I guess. But still you could see that she loves him.

And then the other thing is, is accept the fact that you’re not perfect, that you’re going to make mistakes and fail. But if you’re open to saying, “Oops, I can fix that,” the failure or the mistake is immediately erased. I mean, Luke was so forgiving, and I imagine most children with disabilities are very forgiving, once you realize, I should do that differently.

Never worry about what other people think, because they probably don’t understand your child. I mean, sometimes we would be out in public, and people would stare, and it would make Lili sad. But just realize that you have a special purpose that others don’t understand, and that this child has been given to you as a special gift for your own growth and development.

I mean, there’s nothing sweeter than my relationship with Luke. That’s why it’s the deepest loss I’ve ever experienced. My mother died six days before my son, and I understood her loss. It’s very hard to understand Luke’s. And even though I also knew it was coming. Does that get at your question?

David Hirsch: It more than answers the question. Thank you. I remember one of the very first conversations we had after Jim Polia introduced us, and I think I said to you, “Oh, you went up and above the call of duty,” and you were very quick to say, “No, that’s not the case at all.”

Jim Mueller: Yeah, I never saw it as that. You’re right. I never saw it as going above and beyond the call of duty. Either you love your child or you don’t. Well, I think one thing that I said.

David Hirsch: That’s what I remember you saying, and that was one of the most profound things I’ve heard in a long, long, long time. And it took a while to sink in, but it really was like a light bulb going on. It’s yes or no. It’s not like, “Oh, I love my child a little bit, or sometimes,” but you just need to embrace that, like you were saying a moment ago, make that your focal point and everything else is sort of secondary. That was a very profound statement, and an amazing insight. So thank you.

So, a little bit different question, but similar. What advice can you share with a dad, or parents for that matter, about helping your child?

Jim Mueller: Yeah, I think unless we’re blocked, we always reach for that next thing that captures our imagination. And so just don’t block them or say no or put limitations, even if sometimes it’s embarrassing. Don’t be embarrassed by your child, or if you feel that they’re making a scene, especially in public, if it’s something that’s a true expression, don’t limit them.

Don’t discipline the child for doing something that is just bursting out of their heart. Let them be all that they are. And be embarrassed if you need to be a little bit, if your child starts singing in public the wrong words, off tune, for instance. Don’t tell them to shush, unless other people are getting a little annoyed—but maybe they need to loosen up. I think that’s one thing.

David Hirsch: Okay, so an easy question. I think an easy question. Why did you agree to be a mentor father as part of the Special Fathers Network?

Jim Mueller: Well, having been a dad for 21 years, and I can understand, I mean, I feel I was pretty well informed. I worked in a healthcare system in a bioethics center for eight years, so I knew a lot. So there are a lot of people who didn’t have access to the knowledge that I’ve had access to.

And I’ve learned through 20 years of raising Luke, so I want to be available, I think to anyone, but particularly younger fathers who suddenly find themselves in this position, just to be supportive and help them understand that there is hope and there is joy in having a child with disabilities that others don’t have the privilege of knowing.

David Hirsch: Jim, thank you for taking the time and for your many insights. As a reminder, Jim 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.

Jim, thank you so much for your time and many insights.

Jim Mueller: Sure enough, my pleasure.

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 21stcenturydad.org.

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

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