141 – Rob Harris, Father Of Three, Two Who Passed At Birth – Advocates For ‘Now I Lay Me Down To Sleep’ A National Non-Profit

Transcript:

Tom Couch: Special thanks to horizon therapeutics for sponsoring today’s special father’s network. Dad to dad podcast, horizon therapeutics believes that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases.

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Rob Harris: But he’s a joy and he knows very well about his, his big brother’s in heaven. Um, we go out and we visit them at their, what we call them their special place, which is a cemetery and we celebrate their birthdays and we, uh, we go and decorate out there for the holidays, like Thanksgiving and Christmas in particular.

And, uh, he’s very aware of where of his brothers and, um, He’s he’s a special kid.

Tom Couch: It’s Rob Harris, our guests this week on the dad to dad podcast. Rob tells the heartbreaking story of how he and his wife, Gina lost two children at childbirth and the happy occurrence of the arrival of their third child, a bouncing baby boy named RJ.

It’s an incredibly moving tale and one you’ll hear on this special father’s network, dad to dad podcast. Here’s our hosts, David

David Hirsch: Hirsch. Hi, and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs presented by the special fathers network. The

Tom Couch: special father’s 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 dads to support them. To find out more, go to 21st century dads.org.

David Hirsch: And if your dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to

Tom Couch: death. And now let’s listen to this conversation between special father Rob Harris and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Rob Harris of Littleton, Colorado, who is a high school principal and the father of three boys, including to the passed away prematurely. Rob, thank you for taking the time to do a podcast interview for the special father’s

Rob Harris: network. Well thank you, David. It is a pleasure to be here and it is a pleasure to be speaking to you about something, um, as near and dear to my heart as this.

David Hirsch: Yeah. You and your wife, Gina had been married for 16 years now. The proud parents of three boys, RJ. David who passed away in October, 2007 and Ethan who passed away at 24 weeks gestation, you also experienced two miscarriages along the way. Let’s start with some background. Where did you grow up? Tell me something about your growing up

Rob Harris: about my childhood.

Well, I grew up in Oklahoma city, Oklahoma. I was born and raised there. So if you guys hear a y’all coming from me in this interview, you will know the origin of that now. So yes, grew up there. Uh, we did move around a little bit. Uh, it was about 13, 14 years old. We moved to. My parents’ home state of Louisiana, actually for just a short period of time, uh, with my dad’s job.

Uh, but then ultimately we ended up in St. Louis, Missouri, uh, where went and attended high school. But then upon graduating from high school, there went back to Oklahoma to go to college. And, uh, my family believe it or not ended up back in Oklahoma as well. So that’s, uh, that’s my home state.

David Hirsch: Thank you for sharing.

And, uh, when you were growing up, did you have siblings?

Rob Harris: I did. I have a older brother and an older sister. And they would tell you if they were here, that I’m the obnoxious little brother. So

David Hirsch: you had mentioned there’s quite a big age difference between the three of you?

Rob Harris: Yes, my brother’s eight years older than I am.

My sister is 12 years older than I am. And they, uh, they have a hard time when they realize that their little brother is in his late forties now. So that brings them, uh, to face with their own mortality, I think.

David Hirsch: Yeah. That’s just the reality of the situation. So I’m sort of curious to know, you mentioned, uh, your dad moved around for work.

What did your dad do?

Rob Harris: My dad was actually, you know, in the, in the eighties tech world and the emergence of computers and computer systems, he was actually, uh, in that business. And so, uh, with those moving, uh, he just was moving up within the company. And then, uh, he changed companies, uh, when we went from Louisiana to St.

Louis and then eventually, uh, upon retiring, he, uh, opened up his own business for a little bit and then did some work in the computer industry with some, uh, But some old people that he worked with in Oklahoma. So that was kind of his retiring transition.

David Hirsch: Okay. I think you remember, I remember you telling me that your dad was rather active and healthy.

Rob Harris: Yes, absolutely. A, a avid runner, a avid tennis player. And then at the end of his life, he, uh, was a very active God golfer. Um, I do believe I mentioned this to you. He unfortunately got diagnosed with Parkinson’s, uh, about six years ago and has recently passed as a result of complications of Parkinson’s disease.

But, uh, yes, he was very active and we bonded a lot as father and son through the sport of running. I’m an active runner now. Due to my, uh, my father’s influence cause he, he ran quite a bit and, uh, that was something that he and I did together quite a lot.

David Hirsch: That’s fabulous. Uh, there’s not too many guys that can say that they have dads that were active enough to do things with them, especially as young adults for that matter.

So I’m sort of curious to know, how would you characterize your relationship with your dad?

Rob Harris: My dad and I had a good relationship and the fact that he really modeled how to act more so than he spoke about it. He w he was a pretty reserved guy unless, you know, my brother and I made our mother mad. And then we got the wrath of our father, but, you know, he was, he was pretty quiet and unassuming and led more by example, more so than anything else.

And, um, you know, I would say that our, um, conversations weren’t. Always necessarily very deep. Um, but he made up for that through modeling. If that makes sense, he kind of modeled what it meant to be, uh, to be a gentleman, you know, as I’ve been a husband to my wife and. Remembering some of the things that my father did for my mom, because he loved my mother and he loved my mother very well.

And he was a great example, uh, to follow. And so it taught me a lot, even though he didn’t speak about it, his actions more so taught that to me on the, how to be a, how to be a good husband.

David Hirsch: Yeah. Well, I think that, um, the actions do speak louder than words. And I remember at my grandfather’s funeral, how does he was my father figure?

He died at age 93 when I was 40. So the better part of 20 years ago, I, um, ran across a poem by Ralph Waldo Emerson. And, uh, the statement or the phrase that comes to mind is that your actions speak so loud. I can’t hear what you’re saying. And, uh, that’s sort of how I interpreted what you were saying about your dad.

You know, he, wasn’t always saying, telling you what to do, but he was just a great role model. And I think you mentioned to me that he was a deacon on a previous conversation. So obviously his spirituality played an important role in his life as well. Yeah.

Rob Harris: His faith was incredibly important to him and yes, he did model that very well.

And he was a deacon. He was a Sunday school teacher and, um, I was very dedicated to that. That was, that was one of his biggest, uh, role modeling markers, uh, for lack of a better word is him in printing that on his children’s lives and the importance of, uh, faith and, um, and us living that out. For sure.

David Hirsch: That’s fabulous.

So when you think about your dad, is there an important lesson or a takeaway that comes to mind? Something that, you know, You do today as a result of, you know, the role model that your dad was,

Rob Harris: you know, the, one of the best characteristics about my father and, um, and I can even connect this to my grandfather, his, my paternal paternal grandfather, uh, his dad is, my dad was incredibly kind.

He was a very kind, uh, sincere person who genuinely cared for others. And I never knew my paternal grandfather. He passed away before I was born. But everyone that I know that knew him and even his eulogy at his funeral, uh, cause we actually have the written document of it speaks to how kind my grandfather was and how everyone liked him and how everyone liked my father.

And one of the things that I know is deeply embedded in me that I got from him is the importance of kindness. And being kind to others, even those that you disagree with and always assuming the best in others. And, um, my dad was excellent at that.

David Hirsch: Yeah. Well, thanks for sharing. There’s a lineage there and, uh, there’s something that’s been passed down.

That’s a good something to be passed down. So from what I remember from an educational standpoint, you went to Southern Nazarene university in Bethany, Oklahoma. Yeah. Colorado Christian university. Um, and I’m wondering when you finished your education, what is it that you were thinking about or where was your career pointing you?

Rob Harris: Well, uh, when I got my bachelor’s degree, um, from Southern Nazarene university, at that point in time, I, uh, I knew I wanted to work with students to some capacity. Um, my first job was not a traditional teaching job. It was working at a home for, for students who were making some poor decisions in their life that led them to be in this particular facility.

It wasn’t like jail or anything like that, but it was a, it was a controlled environment to help them get back on track. And I was more like a tutor mentor coach from that I had the opportunity to work. Youth camps over the summer, which opened the door for me to get into, uh, uh, education at a private school.

Uh, where I began teaching social studies and that kind of opened up the door, uh, for me to pursue a career in education. Um, my master’s degree is in curriculum and instruction, which is an educational degree. And, um, and that’s what I’ve been doing ever since. But, you know, the initial call to do that was wanting to work with and to help students out, do for them to see, um, you know, realize their best potential.

David Hirsch: And from what I remember, you had mentioned that you had spent 14 years in the classroom and then the last six years or so as an administrator.

Rob Harris: Yeah, the total it’s, the administration piece has kind of moved around a little bit. I was an athletic director for a while, then went back to teaching and then went back into, uh, administration at the, at the assistant principal had lead principal type of positions.

David Hirsch: I’m sort of curious to know, uh, how did you and Gina meet?

Rob Harris: That’s a great question, because that actually happened at the school. Uh, we had, uh, assemblies at our school and, um, the school that I was working at at the time, I was the athletic director and, uh, Gina, which is my wife’s name. She, um, was invited to come and speak to our chap RSS.

And I remember sitting there in the audience and our, uh, performing arts theater, uh, where we would have assemblies. And I remember thinking to myself, wow, she’s really cute. Um, but you know, I didn’t think much more of it I’ve, you know, after that, I would just kind of talk myself out of it because I was the athletic director, but I also taught a couple of classes.

So right after the assembly, I had to go teach. And, uh, when I returned to my office, I see a photocopy of, uh, Gina’s postcard. Um, and in my principal’s handwriting gay, it said she’ll be 29 next month and still single, and then a cell phone number. And so I remember walking into my principal’s office, I was like, what the heck is this?

And she’s just like, I don’t know, Rob, I just have a good feeling. I just think you two would really get along. Well, there’s a, uh, she’s. I have this, have this. So I thought about it for a couple of days was wasn’t true. Gina accused me of trying to be cool because I think it took me a day or two before I actually called her.

Uh, so she thought maybe I was just playing it. Cool. That actually, I was trying to think of a way. To, uh, insert myself into her life. And so we were looking to start a cheerleading program and I had remembered that in her presentation, she talked about how she was a cheerleading coach. And so I used that, that was my end.

So I called her and said, Hey. We’re looking to start a cheer program and just kind of wanted to pick your brain. Well, she was onto me right away because I did not ask the right questions about trying to start a cheer program. So she knew there was more to that, but, um, I eventually got her to agree, to show up, to help out, uh, at a cheer practice.

And, um, I asked her out and, uh, She redirected rejected me initially, because she had already had plans with her mother that night. Cause I asked her out for that night and, but she did encourage me. She goes, but please ask me out. And uh, and we’ll, and we’ll go take that first day, which actually wasn’t too long ago.

We celebrated our, uh, November 8th was our first date. I love

David Hirsch: that story. Thank you so much for sharing. Well, let’s talk about a special needs if I can phrase it that way on a, more of a personal basis and then, uh, beyond. And, uh, I’m sort of curious to know before losing your first two boys, David and Ethan.

Um, if you or Gina had any experience with the call it special needs community?

Rob Harris: Um, no, we actually, we didn’t.

David Hirsch: Um, well, what is the backstory on David? Birth, if you will. And then, uh, what’s transpired since then.

Rob Harris: Sure. Well, we, um, just like any parents, you know, we were married to, uh, or any couples, so to speak married couple, um, we were married for a couple of years and then we decided, Hey, it’s time to start thinking about having kids.

And so we got pregnant with our first son, David and thought everything was going just fine at about 20, 21, 22 weeks, something like that. Um, I could be off there, but we got our first ultrasound of where the agenda reveal happened. You know, we had never seen an ultrasound before, so we. Looked fine to us.

And, uh, we found out we were having a son. So I remember Gina and I were so excited about that. We, we left, we went and bought a couple of, uh, outfits, you know, a little boy outfits, uh, that we were going to have. And we began thinking things out for his nursery to have different, uh, you know, I’m a big sports guy.

I have different sports things, you know, up in the nursery for him. And we just went, went along business as usual. Unfortunately, a few weeks later, um, our doctor had been out of town. They analyze the ultrasound and, um, they found some. Complications. So we get a phone call. We were actually working at a conference, um, a youth conference that, uh, that Gina used to organize and run.

So we’re there, we’re in the middle of a, an activity. And I see her on the phone and she, you know, gestures me to come over. She’s like, it’s the doctor? Something’s wrong? With with David. And so, uh, the very next day we went into, uh, the doctor’s office and that’s when we were informed that David had a condition that’s called Potter syndrome and Potter syndrome is simply, um, the fluid in the.

In the uterus, there was not there. And I learned from this, that, because there’s not that fluid, um, because he didn’t have kidneys, uh, Potter centers syndrome, uh, his kidneys never formed. And as a result of that, uh, the fluid is not present and his lungs will not be able to, to form and basically found out he will not live.

Um, after birth, um, he would be alive and he would be pain free, uh, while he was with my wife. Uh, but upon birth, uh, he would pass. And so receiving that news about your first child was devastating. And I think we just immediately went into shock, um, because. We didn’t really know of anybody that had experienced something like this, at least in our family and amongst our close friends, we had never heard of anything like this before.

And so, you know, uh, at this point we’re left asking questions and, um, you know, our world is turned upside down.

David Hirsch: Yeah. Well, I’m very sorry to hear that. Uh, I’m just trying to put myself in your shoes, learning about that situation, probably investigating, you know, what is this Potter syndrome? And, you know, the devastation that goes along with realizing that this is going to be a very short lived experience.

So was he to term then, or how did the pregnancy progress on what, what trends.

Rob Harris: Yeah, good question. It followed like everything that we went in and talked to her doctor because we’re with a parent ontologist and then we went to our regular OB GYN and, um, you know, he kind of told us what we can expect and everything kind of fell ran according to what happens with people who get the diagnosis that their child has Potter center.

Um, it seems to be very prevalent amongst, uh, Uh, males more so, uh, but you know, girls can get it as well, but he went to 30, 34 weeks, which was about typical. I think it was anywhere between 30 to 35 weeks. Um, then there, then they start coming prematurely and, uh, we agreed to carry David for as long as we could.

Um, and at that time that was our time of bonding with him. We read to him. Um, at night, um, you know, respond to him. He didn’t kick very much, which was typical because he didn’t have the fluid, uh, in there. Uh, but he did, he did move and, uh, there was responses we think to us and, uh, we use that as an opportunity to bond with our child.

And, um, and we wouldn’t trade that for a moment. There were moments and times that it was difficult, um, because of course my wife is looking pregnant and. When you see a mom who is expecting, that’s usually good news and people want to enter in conversation, especially other women like, oh, when are you expecting, when are you due?

And that we weren’t ready for it. You know, and it got to the point where, um, my wife and I would go on into a maternity store. So for her to be able to, uh, pick out some clothes that she needs, and then I would go up to the register to pay for it because, uh, at certain stores they’d always ask, oh, when are you due?

What are you having? You know, are you excited? I bet you can’t wait. You know, And we learned, you know, after a couple of those encounters at that put Gina in a very difficult position. And so, uh, from then on, I went and made those purchases to try to shield her and protect her from that. And, uh, but yeah, you don’t think about that.

Uh, whenever you’re walking through all of this. So he was born in, uh, like I said, 34 weeks, uh, three pounds, 13 ounces. Um, we were part of the reason why we felt good about carrying him and doing the things is one, it’s a testimony to our face. You know, we believed that, uh, you know, that this is the time that we’d been been granted, uh, with our son.

So we’re going to take every opportunity, but we had more than one doctor say that he would not experience anything. That he would not be in pain at all. Um, and that made us feel better because that was one of those things where like, we don’t want our child to experience any type of pain. And so, um, you know, he was, he was born classified as a stillborn, um, and they told us he may be alive for a minute or two, but.

What they assured us as he would kind of shut down almost like a computer. So there wouldn’t be any pain really, uh, in response to that. So, uh, but he was born, still born. And, um, and that was, that was hard because when you’re put in a situation like that, when you go to a hospital to give birth, you’re supposed to be walking out with a baby.

And my wife and I walked out of the hospital and two handed. And, uh, that’s a, that’s a difficult, that’s a difficult, difficult journey to be on.

David Hirsch: Yeah. Well, thank you for sharing and being so open or transparent about the situation. Um, and you had all this time to think about it as opposed to, oh, we’re going in for the delivery and then finding out about it, like all at once.

And I don’t know what’s better or worse. Um, but I, I think that knowing, um, If you had to pick one path probably as better, so that you’re prepared for that situation. And like you said, you maybe were more engaged or you spent, you were more intentional about spending the time with David before the delivery, which you might not otherwise have.

So, um, again, my heart reaches out to the two of you. To have had that experience, but that was just the beginning of your journey, right. To become parents. Um, and what’s transpired since then.

Rob Harris: Well, after that, you know, they, uh, sured us, that this was probably just an anomaly that, uh, you know, that’s, these things happen from time to time.

Um, usually, you know, unfortunately a lot of people have walked the path of miscarriage. Uh, that’s not uncommon. Um, with, uh, husband and wives, I’ve, we’ve met a lot of people that have miscarries. And one of the things that they told us is usually a, a baby, like David most likely would have been miscarried, but for whatever reason it did not.

And so for, yeah, for all intents and purposes, they’re like, you’re, you should be fine. Go ahead. And so shortly after we, uh, we got pregnant again and had high expectations. Excuse me. We had high expectations of like, everything was going to be fine. So at this point, uh, under our healthcare provider, because we had had this incident with David, they went ahead and scheduled us for our first ultrasound visit at 14 weeks.

Um, to go ahead and go to a pairing fetologist. Um, To get to get the high definition, uh, ultrasound, make sure everything was okay. And one of the first things that we got is, well, there’s fluid there, which, you know, David did not have fluid, so we thought, oh great. But then we knew something was wrong because the, uh, the ultrasound technician was on the ultrasound.

The pairing fetologist was in there and he walks over and asks to sit down. Or the ultrasound technician is. And I remember Gina and I looking at each other going, this doesn’t look good. And so he’s looking around at it and, you know, making some notes and so forth and so on. And he looks at us, you know, he finishes up and wipes off my, my wife’s belly and says my office is right next door.

Do you mind just walking in there and I’ll be in there to talk to you about a couple of things. I remember walking out of there and I was angry because I knew it wasn’t going to be good news. I just had this feeling that it wasn’t going to be good news and sure enough, he came in and told us, and at that point in time, they couldn’t even determine the sex of the baby.

And, um, Uh, I’ll go ahead and say he, because we did find out a little bit later on that, uh, it is a boy, but, uh, so he, Ethan, uh, cause we will name him. Ethan, um, had what was called cystic hygroma and hydrops, um, which was a condition where he had too much fluid fluid in his tissue. And he had some growths on either side of his neck and other things and they said eventually his heart will get.

And, um, because of the nature of his condition. Now, what was bizarre about this whole thing is they were two completely unrelated conditions. And, um, our doctor who had been a fetologist for 18 years, that he had never seen anything like this. Um, and they actually even asked us to do some, some genetic work.

Uh, which were like, sure, go ahead. Um, but, uh, Ethan, you know, it was a matter of time. We kind of did the same thing that we did with David, spend our time with him, uh, to read to him, talk to him. Um, but we, we went in weekly, uh, to get an ultrasound, to see if his heart was still beating. And, uh, unfortunately the one day, uh, That we walked, we walked into the doctor’s office, uh, went to get to the ultrasound.

His heart had stopped. And so that day we checked ourselves into the hospital for, so then for them to be able to induce, uh, for him to be able to be born, um, That was a, it was a different circumstance and it was a far more difficult circumstance, you know, obviously, uh, leading up to that, you know, the delivery was a lot more painful for my wife and, um, his condition where David was really was a beautiful baby, um, to be able to see him was he was beautiful.

Ethan, you know, because of the nature of his condition, uh, had some disfigurement and other things like that, which was very, very difficult. Um, so that was hard. And, um, and having to walk through that journey and then afterwards, uh, Medical professionals really could not come up with any answers for what was wrong.

They had some hypothesis because we went on and had two more miscarriages. Um, and part of their hypothesis is, is they didn’t think that we could have a healthy boy, because one thing that we learned from this and whether or not this is still medically accurate, but at the time, what they told us is most miscarriages are boys generally.

Which I thought was interesting. Um, I have not researched that, so I don’t want to be putting out false information, but that was something that we were told at that time that, um, that most miscarries are boys. So what they thought is we had had four pregnancies of four boys that had complications. And so as a result, they said, well, we don’t think, um, you can have a healthy boy for, for whatever reason.

And they had various explanations of what that, uh, what that possibly could look like.

David Hirsch: While that is so much taken Rob. Um, but it sounds like you weren’t deterred as far as trying to become parents, natural parents. Um, and there is, if I can say it this way, A bright spot to the story. Yeah. Well, you really struggled, like you just described becoming parents the first four times out, if you will.

Um, you do have a son, right? How is it that, uh, RJ who’s now eight, uh, has come into the world and what’s transpired here.

Rob Harris: That’s a miracle story. And, uh, I would tell all your listeners about, uh, just why it’s a miracle, but I will just give you the very quick, uh, summary of all of that we got pregnant. We weren’t actually planning.

We, we really know. I mean, I know there is, you know, the birds and the bees, so to speak. So I’ll spare the audience, you know, that whole thing, but we really didn’t intend for this to, uh, to transpire because we weren’t real sure where we were, where are we going to consider adoption, which is a wonderful, wonderful avenue for couples to become parents and many that we know who have actually taken that journey, but we weren’t a hundred percent sure about that yet, but then, you know, we find it.

Gina’s pregnant. So, um, you know, we’ll go to the doctor and do all this usual thing. And so we get to 14 weeks. According to our doctors is the time when everything should be developed, that can do a high resolution ultrasound and they can determine if there’s going to be any issues. So we pull into the, uh, to the doctor’s office, we’re in the parking garage and I will never forget this because my wife and I am holding her hand.

Uh, we walked to the literally kind of like the edge before we’re going to exit the parking garage to, uh, to go into the, uh, to the bill. So the medical building and my wife stops and says, it will be a miracle if the baby’s okay. It’ll be an even bigger miracle if it’s a boy, because at that point in time, we’ll get to of.

Just came to this conclusion that we’re probably having a girl. So we go up and we do the ultrasound and the doctor’s in there and she’s giving us a play by play. This looks great. This looks great. This is developing normally. And I mean, just in my wife and I are just getting more and more excited. And then at the very end, you know, we could, we’re looking at this TV, that’s up in the corner.

That’s, you know, uh, broadcasting for lack of a better word, the ultrasound. And she goes, do you want to know what the gender is? And my wife and I are like, absolutely. And then they had this icon just flash up. It’s a boy. And I figured that at this point in time, because unfortunately at this moment in time, I had way too many ultrasounds.

And when I saw that, I’m thinking to myself, I think that’s a boy. And when it said, it’s a boy, I still, I, I treasure this moment. And I remember it very distinctly. I’ve looked at my wife and I looked at her eyes and I saw how happy she was, because one of the things that she had always said is she always felt like she would be a mom to a boy.

And for the fact that she got her wish. It was amazing. And just to see her overcome with joy, um, and knowing that we were going to have a son and you’re right to RJ and RJ stands for Rob Jr. I guess I’m that narcissist? No kidding. There’s a family lineage to that I’m named after both my, uh, my grandfathers.

And so, uh, RJ is carrying on that, uh, that mantle, so to speak. But he’s a joy and he knows very well about his, his big brother’s in heaven. Um, we’d go out and we visit them at their, what we call them their special place, which is a cemetery and we celebrate their birthdays and we, uh, we go and decorate out there, uh, for the holidays, like Thanksgiving and Christmas in particular.

And, uh, he’s very aware of where of his brothers and, um, He’s a, he’s a special kid. He really is. And he is, uh, the apple of his mother and his father’s eyes. That’s for sure.

David Hirsch: Yeah. Well, uh, thank you for sharing. Um, what I hear and I hope this comes out right, is that your appreciation for being parents is so much more vivid and palpable than it is for the rest of us.

And I think part of it has to do with the. Challenges that you described having a child and these four swings and misses, if you will, that, you know, have really been challenging, right. Psychologically and mentally, emotionally challenging experiences. And, you know, you don’t take things for granted, right?

Like you were saying, when you first got pregnant. You know, you get pregnant, you know, go to the hospital, every baby, you go home, you know, rinse and repeat type of thing. If you want to have more than one time. And, uh, you know, it wasn’t that way at all, um, far from it in your situation. So again, thank you for sharing that.

There’s something that I want to do, uh, um, explore, which has to do with, um, the work that Gina does now and the organization. Now I lay me down to sleep. Um, how did you first become aware of the organization and what role did it play in your lives?

Rob Harris: Yeah, no, that’s a, that’s a great question. And that’s a, actually an I a, a really cool adventure journey, uh, in and of itself where Gina went to college, she got her undergraduate degree in broadcast journalism.

Um, and she was friends. Was this particular a woman who was the executive director. And now I lay me down to sleep at the time Jessica reached out to, uh, Jean. And told her a little bit about night. Now I lay me down to sleep and what their mission is and what it is that they doing. They had an opportunity to, uh, do a story, um, that was going to be carried by the Los Angeles times by nine news here in the Denver area, uh, which is the NBC affiliate.

But, uh, now I lay me down to sleep at the time was still fairly new. It was a national organization and their mission is this. They take remembrance photography for parents experiencing the loss where they, uh, you know, the death of a baby. And so what we got to experience with this is, as we carry David, as Gina carried David more appropriately, we got the opportunity to get these, uh, maternal pictures of Gina pregnant with David, and then got pictures after he was brought into this world after he was born.

And those pictures are incredibly valuable to them. What we found out is through the grieving process one, it was, it was a tool for us to be able to validate his life, um, because we have pictures of him. Um, and his life is validated. Now he’s not some memory and mom and dad’s, uh, memories in our, in our mental mind bank.

He’s he had a statement here on this earth and that is, uh, forever captured through photography and Gina. No kind of jump ahead a little bit. Um, this kind of opened the door Gina’s background is in nonprofit work and this eventually led to her becoming the, uh, uh, chief executive officer of now I lay me down to sleep, um, because she’s a mom who’s experienced.

And she has lived at, and, um, we’ve had two experiences with that. We got our pictures with David, but with Ethan at the time, and this was before she became a CEO and Gina has heard from countless. And I mean that countless, like it would, we would have to sit down and begin counting and counting and counting of mothers, especially pair of mothers who are older, uh, before, you know, the various technology mediums we have now who wish they would have had something to remember their child that they lost because they feel like they have a hole.

And we can relate to that a little bit because we don’t have pictures of each. Quarterly, some kind of a photographic image of Ethan and it has been an incredible healer. Step for many families, not just us, but for many families, they cherish these photographs. And these are photographs that are well done by professionals or they’re photographs that volunteers take.

There’s a medical program that now lay me down to sleep is currently doing. That has been great during the COVID pandemic, where nurses who care for these families. Are taking pictures. They send them in to now. I lay me down to sleep to their professional photographers and retouch artists and they retouch them and they give them these beautiful, beautiful professional, uh, portraits.

So families can feel like they have something. The thing that really helped Gina and I, when, uh, I I’ve mentioned earlier that we walked out of the hospital and two handed, but the one thing that we did have something to look forward to. Was knowing that we were going to get our pictures and get our pictures of David.

And that was really healing for us. And that’s been healing for many families who have unfortunately had the need of the services of now I lay me down to sleep.

David Hirsch: Yeah. Well, very powerful story. Thank you for sharing. Not only from a personal perspective, but uh, Giving our listeners an idea of what the organization does and the impact that it has on so many others.

And from what I remember from a prior conversation that might’ve been with you, maybe it was with Gina, that these pictures are not the last chance, but the only chance for photographs in many situations. And what does that mean?

Rob Harris: It’s a mortalized through photography, you know, Jean and I’ve had this conversation before. Like, I don’t know if, if people do this, but if you talk about, if your house were to catch on fire, what would be the things that you would want to salvage and get out of there that insurance could not pay for?

And without hesitation are photographs of dates. Um, would be the first thing that we would grab because of the significance that that has on us, because those are our moments and it is moments captured in time, uh, by the photographers that again, validate the life of our. And it’s are pictures that we will have.

And long after our expiration here on this earth, we, you know, we hope that, um, our son, RJ will carry and have those pictures himself to know that that was my older boy. And, um, and to be able to share that with potentially his kids who knows. Um, but it is a, it is a moment that is, that is important for all the families who have to walk this incredibly difficult journey.

It is healing in the sense because they now feel like they’re the lives of their children are validated. And, uh, because of something as easy and as tangible as a photograph, their child now, um, their life has been validated.

David Hirsch: Yeah. And I think, uh, in addition to that, the point is, is that, um, with a child that might have a rare disease who has a short life expectancy, there are opportunities to get pictures taken right over the first couple of weeks, first couple of months, maybe the first year or so, but not so much.

So if you have a child, uh, who, whose life is very limited, um, like you just described. So thank you again for sharing and being so open and transparent about it. I’m wondering about advice now, and I’m thinking beyond perhaps what you’ve mentioned already. Um, if there’s any advice that comes to mind that you might be able to offer dads who would be listening to this and not just ads who find themselves in one of those.

Oh my gosh. Type of situations with the child who might not make a determine or might not. Make it beyond a stillborn, but just to all dads for that matter, if there’s any advice you can offer

Rob Harris: now, a great question, David, and you know, something that I wish I could have gone back, especially to 2008 and give this advice to myself whenever we lost Ethan, because as dads, we’re natural protectors, we want to take care of not only our children, but our wives and.

I remember that moment of feeling incredibly weak when I could not spare my wife, the pain, uh, when I could not save my children because of, uh, you know, because of their, their medical complications. Uh, you feel very hopeless and you feel very weak and that’s okay. My advice is it’s not a time for false strength.

Um, it’s okay. To grieve. I think oftentimes dads put themselves in this position where they push it all the way down into the, your innermost consciousness and they don’t deal with. Or they, they think of themselves as a failure and it’s none of those things. Yeah. You’re not a failure. You need to be there for your wife.

You need to be there, um, during this time. But also you have to take care of yourself in the sense that if you are hurting, um, to talk to professionals who can walk you through the, these, these difficult, uh, circumstances, because sometimes we just need to be able to get it out. And when, I mean to, it’s not a time for false strength is you don’t need to act like everything is okay.

And not admit that to others. Um, it’s not okay. It’s tragic. It’s difficult. We’re not, um, um, it’s not the natural order of things. Um, parents. Are not wired to bury their children. Um, and, and that’s a difficult prospect and that’s a difficult journey to be on. So, um, you have to kind of balance things out.

You have to be strong for your wife. You have to be strong for your, for your loved one and care for them as they go through this. But also. On the flip side, you gotta, you can’t lie to yourself and say that everything is okay. It’s okay. It’s not a matter of weakness to grieve. It’s not a matter of weakness to go and get help if you need it.

And it’s not a matter of weakness if you don’t bury it deep in the deep dark recesses, because it will come up, it will come up, uh, in, in, in your mind and it’s better to get that taken care of. And it’s okay to grieve. It is okay to. Um, it’s, it’s natural. It’s part of the human condition, uh, grieve the loss and, um, and, and go through the necessary steps to be able to cope and to deal with that loss.

David Hirsch: Yeah. Well, thanks for sharing. And, uh, it’s very vivid in your situation, right? Because you. Have a loss like loss of a life. And I know a lot of the dads in the network talk about grieving the loss that they anticipated having with their son or daughter who might have special needs, that they might not be able to talk or walk or the type of things that they would have anticipated doing with their kids going for walks.

Playing sports or something like that. And that is a grieving process as well. Yes. And it’s really important to embrace that. Not like you said, tuck it away, you know, push it down because it’s not healthy. Right. It’s going to come out. You know, it’s not always going to come out in a healthy way, so thank you again for being so open and thoughtful about that.

So if somebody wants to learn more about now, I lay me down to sleep or to contact you. What’s the best way to do it.

Rob Harris: Well, now I lay me down to sleep. The, uh, the website is, uh, N I L M D T s.org. Um, that’s a great, uh, reference, um, for you to be able to go to, again, that’s in, I L M D T s.org. You can go there and on, there is a lot of information about the organization, uh, what all it does, if you have, uh, someone who.

Uh, experiencing, you know, that they’re, um, going into labor and they’re going to experience a loss. There are volunteer coordinators that are on call. There’s a number that you can call. There will be all the resources, uh, contact information, uh, for the different employees, not just my wife, who’s a CEO, but others who would be more than happy to answer questions.

And then also information. If you’re a photographer yourself on how to a volunteer. And, uh, to do this because it is it’s incredibly rewarding work because what you’re doing is you’re providing this type of remembrance, uh, photography for families who were forever be indebted to your work and your professionalism as a photographer.

And, uh, that’s, that’s really special.

David Hirsch: Yeah. Well, thanks for sharing. Rob, thank you for your time. In many insights. As a reminder, Rob is just one of the dads. Who’s part of the special father’s 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, please go to 21st century dads.org.

Thank you for listening to the latest episode of the special father’s network data dad podcast. I hope you enjoyed the conversation as much as I did, as you probably know. The 21st century dads foundation is a 5 0 1 C. Not-for-profit organization, which means we need your help to keep our content free, to all concerned.

Would you please consider making a tech selectable contribution? I would really appreciate yours. Rob. Thanks

Rob Harris: again. Thank you.

Tom Couch: Thank you for listening to the dad to dad podcast presented by the special fathers network. The special father’s 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. Go to 21st century dads.org.

David Hirsch: And if you’re a dad looking for help or we’d like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.

Also, please be sure to register for the special father’s network. Bi-week the zoom calls held on the first and third Tuesdays of every month. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling. Please send an email to David@twentyfirstcenturydads.org.

Tom Couch: The dad to dad podcast was produced by couch audio for the special father’s network. Thanks again to horizon therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop and bring forward medicine. For people living with rare and rheumatic diseases.

Discover more about horizon therapeutics horizontherapeutics.com.