138 Don Raineri – Father of Four Including Twins; One With Down Syndrome, The Other Who Passed Away At Childbirth

Transcript:

Tom Couch: The special father’s network is thrilled to be sponsored by Rubin law. A multi-generational law firm dedicated, exclusively to serving families, raising children with special needs. It’s not one thing they do. It’s the only thing they do. To find out more, go to Rubin law.com R U B I N. law.com or call 8 4 7 2 7 9 7 9 9 9 and mentioned the special father’s network for a free consultation.

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Don Raineri: You know, for my daughters, I probably missed a number of their milestones, but for David, we, you know, his, his learning to walk as you as learning to stand to, you know, to crawl, to stand, to walk. We made parties out of all of those types of things and just really celebrate the small things that just, you know, it, it brings joy and happiness.

But bring me, you know, live in the moment. Yeah. You do have to plan for the future, but just to enjoy every day with your child.

Tom Couch: That’s our guests this week. don Ranieri. Don is the father of four children. One who has down syndrome and another who sadly died at childbirth. We’ll hear Don’s family story, including his involvement in dads.

A charity dedicated to strengthening dads to be more present in their children’s lives. That’s all on this special fathers network, dad to dad podcast. Here’s our hosts, David Hirsch.

David Hirsch: Hi, and thanks for listening to the dad to dad, podcast, fathers, mentoring, fathers of children with special. Presented by the special father’s network.

Tom Couch: This 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 dads, 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. Please go to facebook.com groups and search dad to death.

Tom Couch: And now let’s listen to this conversation between Don Ranieri and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Don Ranieri of downers Grove, Illinois.

Who’s a vice-president of regulatory affairs at Astellas, the Japanese pharmaceutical company, and as the father of four, including one who died at birth and another with Thompson. Don thank you for taking the time to do a podcast interview for this special father’s day.

Don Raineri: It’s my pleasure, David. Thank you for having me,

David Hirsch: you and your wife while I’ve been married for 33 years now, the proud parents of four children, Anna 29, Marissa 27 and twins, Nicholas and David who were born 22 years ago.

Sadly Nicholas died at birth and David has down syndrome. Correct? Let’s start with some background. Where did you grow up? Tell me something about your family.

Don Raineri: Yeah. So I grew up about 80 miles Southwest of Chicago in a small community. The town is called Oglesby, Illinois. It’s a town of about 2000 and I was the middle child of three.

I have a sister who’s five years older and a brother who is. 20 months younger than, than me. It’s um, it’s a very rural, um, farming, mining community. My dad was a laborer in a local mining company that manufactured cement. My mom was a stay at home mom. I was the, uh, first of the family to go to college. My sister did, but she went years after I did.

And it was a great place to grow up, but, um, it was also nice to get out of the small town and go to the university in Chicago.

David Hirsch: So I’m sort of curious to know, how would you describe your relationship with your dad?

Don Raineri: So in my younger years, just as some important background, my dad came from a broken family, so my dad never had a very healthy relationship with his parents.

He was largely raised by his two older sisters and, um, I didn’t meet my grandfather until I was in junior high. And sadly, I never met my grandmother, even though she lived within. Uh, five to 10 mile radius of, of our family. So, you know, growing up, my dad had very high expectations because my brother and I were so close in age, he instilled a strong sense of competition, but he wasn’t warm.

He wasn’t warm as a dad. And I attribute that to a product of his upbringing. Um, You know, interestingly that changed very significantly later on in life. As, as he got older, as he battled some illnesses, he became very warm and caring. He was always warm and caring with the grandchildren, but I always felt him.

Put a lot of pressure on me and my brother to be the best that we could be in, whether it be sports or academics. And, and so there were some strains in the relationship growing up, but it grew into a very strong and loving relationship. As I got older and married and started having my family.

David Hirsch: Well, if I can paraphrase, it sounds like he had a good work ethic.

You mentioned it was labor. And, um, given his background, you know, he did the best with what he had. And, um, I’m wondering when you think about your dad, if there’s an important takeaway or two, a lesson learned or something that comes to mind, when you think about

Don Raineri: your dad, a couple of things, as you said, he was, um, just instilled a very strong sense of work ethic in all of us.

And I see that in my own children. I think it’s carried through the generations. When I was in high school, my dad, uh, made both my brother and I worked for a summer as a labor. In underground tunnels where rock would be mine. So you can imagine a hundred degrees in these tunnels, but wearing full gear to protect yourself.

It was, you know, it was, it was a tough job. And I think my dad had us do that to show us what our lives could be like if we didn’t pursue an education. So for me, it was a great, it was a great experience that, that he had us do. And I think the other thing, you know, my dad always treated everyone equally.

And I think that’s a very important lesson that I learned from him. He always, regardless of the challenges that he had in his life, he always had a smile on his face. He had a nickname, uh, people called him sunshine because he was always, he was always smiling. And I think that was something that, that I, I took very seriously as well.

I never treat anyone any differently than I would. I would treat, you know, my family. And I think those are two very important life lessons for me. Yeah. Well,

David Hirsch: thank you for sharing. You did mention, um, that your dad’s dad, you didn’t meet him until you were in junior high and the relationship was a little disappointing.

That’s my word, not yours. Um, and, uh, I’m wondering if, um, your other grandfather, your mom’s dad was involved in your life.

Don Raineri: So my mom’s father died when my mom was five, but her mother remarried. And so her stepfather was very involved in, in my life, uh, in, in his later years. But would mow his lawn. And I always look forward to the weekly lawnmower things because afterwards we would sit and he would tell me stories, um, about his life, uh, you know, growing up and everything.

And I just found these stories to be not just great history lessons of my family, but just about life in general. So those were very meaningful discussions. Okay.

David Hirsch: So is your step grandfather that you were just referring to? I want to remember you took a BS at university of Illinois in pharmacy, correct.

And you got some more education. What other education

Don Raineri: did you go? So I got a doctorate in pharmacy as well. So when I was near finishing pharmacy school, I wasn’t quite sure that it would be challenging enough for me. So I contemplated medical school. I took the, um, the MCATs, um, got accepted, but I chose not to pursue medical school.

I instead got a doctorate in pharmacy. Um, it was, um, obviously not. A number of years of, of education. And I had also started dating my future wife and that was another influencing factor. So I got a doctorate in pharmacy and then I followed that with a two year research fellowship. And then my first position was, uh, a faculty position teaching in the college of pharmacy and the department of medicine at the university of Illinois.

David Hirsch: Excellent. So did you think you were going to. Pursue an educational career then as opposed to a call it a, a worker career?

Don Raineri: Yeah, I really did. I was really, I’m convinced that I was going to be a tenured professor in the university and do do, um, original and industry sponsored research in the, in the CNS area.

Um, it changed after a couple of years of working for the, the, the, the state of Illinois and not getting a pay raise by coincidence, working with. In the pharmacokinetics laboratory, analyzing, um, blood samples for a specific drug. I ran into an individual who asked me if I’d ever considered a career in the pharmaceutical industry.

And after having a discussion with him, I just decided to go for that. And so for the last 30 years, I’ve had a career in the pharmaceutical industry.

David Hirsch: And from what I remember, you were with Judy, Sarah.

Don Raineri: Um, I was with GD Cyril for a total of seven years. Um, I was with the Tories, um, for a couple of years. Um, and in my current role at Astellas, I’ve been there.

I just had my 15 year anniversary in July.

David Hirsch: Okay. Let’s switch gears. I’m sorta curious to know how you and

Don Raineri: Wally met. So Wally and I met in pharmacy school. My wife was in a class two years behind me and she asked me out on our first date. And, um, it took a couple of dates for me to realize that it was the real deal.

So

David Hirsch: is she also a pharmacist then or not?

Don Raineri: She is a pharmacist. Yes. She practiced pharmacy. For several years, maybe five years full time, several years. Part-time while there. Children were young, but for the last 10 or more years, she hasn’t practiced pharmacy

David Hirsch: switch gears and talk about special needs first on a personal level and then beyond. And let me first start by saying very sorry for the loss of one of your twins, Nicholas, at the time of his birth. Um, What was the backstory? Was it a high risk pregnancy? Just because, uh, you were having twins or.

Don Raineri: No, it wasn’t, it was a very, uh, normal pregnancy with very normal, um, doctor’s visits.

Um, we were surprised that we were having twins. There was no, um, fertility, drugs involved. My wife’s family does have a history of, of twins that run in the family. And so we were thrilled, you know, having two girls, um, thinking that we will have a complete family with two girls and two boys. So it was, as I said, a very, very normal pregnancy, um, ultrasounds while one twin was slightly smaller.

There was no concern raised by the OB and my wife and I were. I just decided to accompany her for a late, um, pregnancy doctor’s visit. Um, so it was maybe a month before the scheduled, um, delivery day. We knew that she would have a C-section and I can just remember the look on the doctor’s face and he kept trying to.

Um, hear the heartbeats. And then he told us that he was very concerned because he was having a very hard time hearing one of the heartbeats. And so he, we were very, his office was very close to the hospital. He asked if we wanted an ambulance, but he wanted us to get to the, um, Hospital right away so that he could arrange for the delivery.

Um, I, I drove my wife. We just, you know, we went through as fast as we could. We got her into the delivery room. Um, but by the time Nicholas was delivered, they weren’t able to resuscitate him. Wow. And so they delivered Nicholas first in an effort to try to resuscitate him. Um, Uh, when they told me that they couldn’t, I just remember being in the delivery room, uh, praying over Nicholas and they delivered David.

I heard him cry. Um, and the doctor came over to me and his first words to me, more that, you know, we think your son might have down syndrome. And I just remember looking at him and I said to him, but he’s alive. Right. And I mean, that was the only focus. Of my day at, you know, at that time I wasn’t going to put a label on him.

I was just happy that he was alive. And regardless of what challenges there might be, those were, it wasn’t even something that entered my mind at that time.

David Hirsch: That sounds like a very dramatic story. You go in for an ultrasound, you know, sorta like a monthly checkup and all of a sudden your list over to the hospital, you know, sort of like a ASAP type of thing.

And, um, I can only imagine what that must’ve been like, um, in your point about the down syndrome, being more of a secondary issue, right? Uh, because you’re celebrating the fact that he is alive and you might’ve taken that for granted and had the situation with Nicholas, not kebab the way you described it.

Exactly. And my heart reaches out to you guys. Uh, but that was what, 22 years ago

Don Raineri: now? 22 years ago. Yeah, it’s coming up on, uh, the birthdays, um, November 11th.

David Hirsch: So before David’s, uh, diagnosis with down syndrome, Did you, or while you have any experience with, uh, special needs,

Don Raineri: Justin, maybe a year or year and a half before David was born a very close, close friends of ours from pharmacy school, um, who are married, had twins, one of their twins, the male twin had down syndrome.

And that was really the only exposure that I had to down syndrome.

David Hirsch: So it’s sort of a coincidental, you’re both having twins and one of the twins. Has down syndrome, correct. It’s almost like lightening striking and very similar patterns.

Don Raineri: Exactly. And we, um, they lived in downers Grove as well, just a few blocks away.

Very unusual situation, I guess

David Hirsch: when you take yourself back to that point in time, and obviously there’s a lot of uncertainty and emotions running, but as the dust started to settle, uh, where were you psychologically? What were some of the concerns or fears that you had early on?

Don Raineri: Yeah. I mean, so, you know, it, it w it was just a whirlwind of emotions at first, just trying to, I guess, accept the loss of Nicholas and trying to be the strong father figure.

Um, strong for my wife, strong for my, my daughters who are five and seven at the time who were, were just really. Uh, thrown by everything because, uh, as you can imagine, they had each planned on taking care of a baby and had helped picked out names and everything like that. And so for all of that, their, their, their dreams, just to be dashed and in a heartbeat, there, there was a lot, a lot to deal with at that time.

But I also had to be strong for David. David had some medical challenges when he was born, um, his, his bone marrow wasn’t producing platelets. And so they had to keep him in the hospital until his bone marrow kicked in. And fortunately it did on its own without any intervention. It was, it was a lot for my wife to handle cause he had low muscle tone.

He had a poor, I can reflect some nursing was an issue. And you know, there was just a tremendous amount of sadness while we’re trying to be. Grateful that we have this beautiful child in our house. So it was the whole gamut of emotions. I think for me, one of my concerns was, am I going to be a good enough dad for this special child?

You know, am I going to give him the life that he deserves? Am I going to be able to provide for him? Am I strong enough? You know, to be a good dad for him? That was, that was what was going through my mind.

David Hirsch: Yeah. Well, thanks for sharing. And, um, I appreciate your authenticity. Was there any, uh, meaningful advice that you got early on that helped to put the down syndrome diagnosis into perspective?

Don Raineri: You know, I don’t think we ever made an issue out of it. I think w you know, because he, he, he survived, we had kind of made a pledge that we weren’t going to treat him any differently. I mean, obviously we’re going to meet his needs, but we were going to treat him the same as we did. Our two other children and that we would nurture and motivate and inspire him.

Um, but we, you know, we, weren’t going to give him a label. We weren’t going to set limits for him. And I think that’s why she’s evolved to be just the tremendous young man that he is today. That’s fabulous. I mean, literally there were a lot of fears. I mean, I, I didn’t know some of the medical complications, you know, that he could potentially face and, and we’ve been very blessed in that.

He’s been, he’s been very, very healthy, you know, he’s, he’s, he’s verbal. Um, he’s extremely active in many different activities. And I, and I think it’s a lot because of the way that we, we raised him. We, we, we didn’t see him as being, um, being any different.

David Hirsch: Yeah. Well, I think that what I heard you saying is that, um, you tried to attend to whatever his needs are, but you did everything with them as whether he had down syndrome or not.

Right. What I witnessed Don is at, um, and I know it’s unintentional, but some families will cuddle a child who has a weakness, whatever the weakness has. It doesn’t even have to be a special need and what they don’t realize inadvertently the further handicap in there. Exactly by not having high standards or high expectations and, you know, hopefully helping them each reach their full potential.

That’s what you want for your kids anyway, whether they’re typical or atypical. And, um, thank you for being so articulate about it.

Don Raineri: And, and David’s still tries to, to milk that, you know, he’ll, he’ll say my, my wife’s birthday was on Halloween and he said, mom, for your birthday, I’m going to let you make my breakfast for me.

You know, you got a wicked sense of humor. Um, but, but, you know, yeah. If, if, if you make an offer to do something for him, he will take you up on it. And so I had to, you know, growing up with my daughters of course, that, that, that beautiful smile. You know, they would do anything for him. And I’m like, no, you guys have to let him figure this out on his own.

Yeah, that’s

David Hirsch: good. So speaking of, uh, his sisters, Anna and Marissa, I’m sort of curious to know what impact David’s had on a sister’s your marriage or the rest of your family for that.

Don Raineri: Yeah. So, so he’s, he’s had a tremendous impact. So for example, you know, with the time that David spent with, um, the different therapists, whether it be, um, speech therapy, physical therapy, occupational therapy, I think that was a huge influence on my 27 year old daughter muddy.

So in her career decision to become a pediatric physical therapist, she has her doctorate in physical therapy. My older daughter, Ana is in, um, she works for a midterm. Athletic club and she, I’m not sure what her exact title is, but she is in a, in a customer service role. And I, and I, and I think just, just being in that role that she is in, she is just great in terms of her interactions with people she’s got tremendous.

Interpersonal skills combined with that strong work ethic that she inherited, uh, with my dad has allowed her to be very, um, successful in her career. And, you know, as when they were dating, I would always judge the boyfriends, the friends that came over in terms of how they interacted with, with David. And if they didn’t warm up to David or if they were afraid of David or whatever, I always kind of let them know.

That wasn’t maybe my first choice for them. So I’m, I’m blessed in that. My, my oldest daughter’s husband, Ben is like a brother to David. He’s a he’s, he’s a son to my wife and I, and he he’s a brother to David. And the bond that they have is, is very special. And my, uh, daughter muddy says boyfriend as well.

Um, just equally just the relationship that David has with John is, is, is very special.

David Hirsch: Yeah. Well, um, I’m interested to hear that because they’re not the first person who’s mentioned that, uh, if you do have a child with special needs that it’s like a litmus test, right.

Don Raineri: It is,

David Hirsch: you know, what friend, girlfriend, depending on whether you have daughters or sons, right.

You know, how do they interact with, how do they react to, and, uh, David obviously is such an integral part of your family. You know, you couldn’t accept somebody in your family who didn’t get it or didn’t understand, or didn’t embrace him for who he is. And, uh, you know, um, it’s not a good or bad things, but it’s just one of those things, right.

That, uh, sort of a built a litmus test that you had there all along these years.

Don Raineri: Yeah. He’s the, he’s the nucleus of our family is what I, what I tell everyone, the glue that holds us.

David Hirsch: That’s fabulous. So I’m sort of curious to know what supporting organizations you for light on for David or for the overall family as he’s been growing

Don Raineri: up.

Yeah. So we’ve been very involved with the Ray Graham association. Um, he’s participated in a number of active activities through Ray Graham and special Olympics has been a huge part. Uh, David’s uh, participated in basketball and track swimming, baseball. Uh he’s he’s been riding horses at the Hanson center, uh, which is part of the Ray Graham.

Um, since he was. Three or four he’s been completing in the equestrian events in special Olympics since the age of seven or eight. And if we weren’t in the middle of the pandemic, he would have just had a, um, competition, um, in, in October, which, you know, all of those events got canned. We live in, in district 99.

I mean, David David played the baritone in the band to imagine this little kid lugging this big baritone. When he was in fifth grade, it was almost bigger than him. Um, but he played it all through high school. Know one of, one of the highlights of that was, uh, his, the, the district 99 high school bands won some big competition and David’s freshman year in high school got to play Carnegie.

Oh, my gosh. So for me, it was such an emotional experience. Um, just to, to see your, you know, your, your kid with down syndrome on, on the stage playing Carnegie hall, and I was missed it. I was coming back from a business trip, uh, from Japan and I was debating whether I should fly directly from Tokyo to New York, but I thought I’d.

I’ll go. And it was the end of February, early March and a snow storm. And two of my flights were canceled and I literally literally got there right. As I needed to get him backstage to get drunk. And ready to perform, but I made the performance, but I was, um, there was a part of me that was worried if I was ever going to make it.

Cause I had my flight the day before it was canceled. I was supposed to fly out the night before, have a family celebration. I literally got there hours before the actual performance, but I got to see them. And that was a highlight a highlight of a lifetime. So

David Hirsch: we’re able to record the performance.

Don Raineri: Yes. My wife has that.

My wife has that. Yes. Yeah. Well that

David Hirsch: sounds like one of those. Special keepsake type experiences for the whole family, right? Not only for David, but for yourself, your wife and the rest of your family.

Don Raineri: So, yeah. And it’s, you know, kind of the philosophy we have because we always said to him, you know, how do you get to Carnegie hall practice, practice, practice, and that’s.

The motto that we’ve had for him for anything he does, he has to practice everything. It might take him a little bit longer, but with practice, he can do the same things that others without a disability.

David Hirsch: Yeah. Well, um, from your lips to God’s ears, I’m hoping that anybody listening to this podcast, uh, will embrace because that’s all it is.

It just takes people longer. Right? Exactly. Some people. I have different talents. And if it’s something that’s on your heart or something that you have the will for, you know, you’d just have to be persistent. So thanks again. So any other organizations or activities that come to mind, um, that, uh, David’s been involved in?

Don Raineri: Yeah. You know, special Olympics has been the big one. He’s he’ll be living in the transition program. He’s going into a program called Eagles that will help to continue life skills. He’ll be taking classes at a college up to page, you know, We just keep him so busy. He’s a senior altar server in our parish.

He, um, has a green belt in a traditional, um, karate class. That’s only three belts away from a black belt. Um, and, and he, he’s probably right upstairs, upstairs right now. Um, taking his virtual drum lesson. And he works out with a personal trainer as well. So he’s, you know, we’ve, we’ve, we’ve, we’ve done a lot of things that, you know, we would do with any, any of our children.

David Hirsch: That’s fabulous. Well, I think that, um, one of our secrets raising our five kids was to make sure that they were always doing something idle time is the devil’s playground. And, um, it sounds like you’ve also embraced that, um, parenting philosophy, if you will.

Well, let’s switch gears and talk about, um, special needs beyond your own personal experience. And I’m, I’m sort of curious to know, how did you learn about this dad’s of steel and what does the organization

Don Raineri: do? Yeah, so I met David Steele, who is the founder of dads of steel, um, in early 2019. I’m pretty big into, into fitness and working out.

And I was just looking through some different websites and I, and I saw this and I was intrigued by it. So I went to their website and I, I saw Dave story, which I can share in, in, in a little bit. When I found out that he also worked out at the gym that I worked out, I and my daughter was working. I’m like, Hey, do you know this person?

And she says, yes, I do. Um, we watch his daughter in kid’s town, which she was managing kids town at the time. And so she made the introduction to Dave and I learned more about his, his organization. Um, Dave started the organization back in 2016, following the death of his infant daughter on Aubrey violence.

For days. As any parent goes through, um, you know, following the loss of a child, I mean, you you’re, you’re, you’re lost. You’re you’re struggling. Um, he had, he had put on weight, he wasn’t exercising and Dave was a college, uh, former college basketball player and very, very active. And he. Just had this vision of creating this organization that would bring dads together to motivate them, to encourage them and to inspire each other.

So it’s become a, you know, a place where dads can come together. They can. Share their successes. They can also share their struggles and they, they can do that in a safe place. Basically the whole vision is that we want dads to become the best version of themselves that they can be for their families.

And that’s really where dads of steel has come from. So in late 2019, we. I gave converted dads of steel from an LLC to a not-for-profit. Um, a board of directors was created. I was asked by Dave to join the board of directors and we’ve done some, some good things, but we’re challenged now by what we can do.

And, you know, with current COVID pandemic, we, you know, we we’ve got some, some great ideas.

David Hirsch: Well, I’m very inspired, um, by the work that you’re doing. And it’s so consistent with what we’re doing with the 21st century dads foundation, um, about helping dads to become the best version of themselves. We talk about it, uh, dads being present physically, emotionally, and spiritually and their children’s lives.

And I know that that’s something that you both share in common that you both lost a child, uh, early on. Is that the common thread with all the dads who are involved with dads as steel or not necessarily?

Don Raineri: No. Probably one of the platforms that we can continue to advance. Uh, during this, this time we have a group that we started back in March of grieving dads.

We call it, um, or our grieving dads group. We get together every Sunday morning for an hour, um, via, via WebEx. And it’s a very safe place where we can come and talk about our feelings. I know for both dad and for me, certainly almost 22 years ago now. Many many resources for moms, but there weren’t a lot of resources for dads and dads, you know, handle grief differently, but dad’s grieve.

You know, it just wasn’t comfortable. Even my closest friends, I had a hard time opening up to them because they had never gone through this type of, of loss before. And so we wanted to create this grieving dads group to bring dads together where they could be very open and vulnerable and share their feelings.

And I’ll tell you, we’ve, we’ve got a regular following any given day. We’ll have as few as four, as many as 10, but we’re really trying. The word out there. We’ve got a regular from the Netherlands who dials in every Sunday from the Netherlands, another person from Tennessee, a number of people that are local, but we’ve had them from all other states.

And we’re just, we’re really just trying to, to build our, our message. We, we have topics that we talk about. I think one of the neat things that we’re doing is we’re, we’re collecting content and I think we will be developing like a one-page sheet that. It can be distributed to dads at a hospital who have lost a child.

We have enough content that we hope to write a book in the future as well. I think there just needs to be more resources out there for, for dads so that they know that they’re not alone in their grief journey.

David Hirsch: Well, I think it’s amazing what you guys are doing. I remember from a prior conversation, it’s the top 10 things you’d tell a grieving dad who’s lost a child is out.

You’re referring to that one page sheet.

Don Raineri: Well, yeah, we were going to do like the top five to 10 things that you had, you would share with, with the dad. We’ve also, you know, are wanting to develop one on like the first holidays, like how to get through the first holidays. Um, there’s, there’s a number of these one-pagers but we also have enough content.

I think that we could write a book because there are just so many. So many situations that you end in and, you know, there are times even, you know, even for me, our loss has been 22 years. There are times when you just out of nowhere, this wave of grief will come over you and you can’t suppress it. And you are confused by where it’s coming from, but it happens.

And we just want dads to know that those are all normal feelings. And I think we have some support. Material. I mean, it’s, it’s a club that no one wants to be a part of, but we’re all part of it. And we’re all United by, you know, something common, whether you lost your child at birth or whether you lost your child.

To cancer at an older age or due to, to trauma. It’s, it’s still a loss and it’s something that stays with you for the rest of your

David Hirsch: life. Well, very powerful, very profound. Thank you for doing the work that you’re doing. And we should probably circle back a couple of years down the road, just to see how some of these things have transpired.

So I’m sort of curious to know what role has spiritual ality played in your lives.

Don Raineri: Yeah, so, um, While I wasn’t raised Catholic. I converted to Catholicism after the birth of our daughter Medusa. So I’ve been a faithful Catholic for the last, uh, 27 years. My wife has Cuban. Her Catholic identity is extremely important to her and for us, I really think it was our faith community that helped us get through.

Our loss. Uh, my daughters were enrolled in Catholic school at the time and just the love and support from the families. Um, we probably never had to make a meal for the first three months. When we brought David home, there was a, a tremendous outpouring of love, love and support. So our Catholic identity and our Catholic faith.

Is is very, very important in our lives. And as I said, David’s a senior altar server and it’s, it’s very important for him. David is always the one who will just here’s some bad news and no matter where he is, he’ll just say, dad, let’s stop and pray about this. And it’s just, you know, it’s from his lips to God’s ears.

I, I I’m, I’m, I’m convinced.

David Hirsch: Yeah, well, that’s fabulous. Thank you so much for sharing. I’m thinking about advice now, and I’m wondering if there’s, um, beyond the conversation we’ve had, if there’s any advice that you’d want to share with a dad or parent for that matter, who’s raising a child with differences.

Don Raineri: Yeah. So our very early on, I just, you know, I was, I wasn’t living in the moment, you know, I was like planning for the future or reflecting on the past. I, you know, just live in the moment, you know, enjoy the small achievements, you know, celebrate the small things. Don’t sweat, the small stuff, you know, I know that sounds a bit, a bit cliche.

Um, but for David too, it was don’t focus on what he can’t do. You know, celebrate his difference differences, but don’t set limits for your child either. Don’t tell them all you, you won’t be able to do that. Let them try it. I mean, just, just for us, I think, I think for me, I was very, very, you know, very career focused.

I, um, in one of my roles was global, so I was, you know, traveling the globe and I was. You know, for my daughters, I probably missed a number of their milestones, but for David, we, you know, his learning to walk as you, as learning to stand to, you know, to crawl, to stand to walk, we made parties out of all of those types of things and just really celebrate the small things that just, you know, it, it brings joy and happiness, but really, you know, live in the moment.

Yeah, you do have to plan for the future, but just enjoy every day with your child.

David Hirsch: Yeah, well, words of wisdom. Thank you again for sharing. I’m sort of wondering why is it that you’ve agreed to be a mentor father as part of the special fathers now work?

Don Raineri: I just, I think I have a lot of experience that I can share.

You know, I’ve been around the block, you know, I’ve got 2 22 years of experience with David and I just think for me to be able to give back and share maybe some of the struggles that are. Faced and how I’ve worked to overcome them or where I’ve failed, um, to share those experiences with, with other other dads.

I didn’t have that type of resource for me, but I, I think, um, for me, you know, I’ve kind of got a servant leadership mentality. It’s all about, it’s a, it’s about giving back.

David Hirsch: Well, we’re thrilled to have you. Thank you again for being involved. Let’s give a special shout out to Dave steal. Dad’s a steal for helping connect.

I’m wondering if there’s anything you’d like to say before we wrap up?

Don Raineri: No, just, you know, thank you for this discussion today. I mean, it’s, you know, having a child with a disability, um, has been a true blessing for us and I, and I, I think, you know, while individuals that may be differently abled, they have no limits.

So don’t set limits for your child and just give them these experiences. And the return that you will get is. Exponential, just a true blessing.

David Hirsch: That’s fabulous. So if somebody wants to learn more about dads of steel or to contact you, what’s the best way to do that.

Don Raineri: They can either go to our website, which is www dot dads of steel and that’s S T E L e.org.

Or they can send me an email directly at, um, Don at dash. Of Steele S T E L e.com.

David Hirsch: Excellent. We’ll include those in the show notes. So it’ll make it as easy as possible for somebody to learn about the organization or to reach out to you, Don, thank you for your time. In many insights, as a reminder, Don 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 to you. Please go to 21st century dads.org. Thank you for listening to the latest episode of the special father’s network dad, the dad podcast.

I hope you enjoyed the conversation as much as I did, as you probably know, the 20% your dad’s foundation is a 5 0 1 C3 not-for-profit organization, which means we need your help to keep our content free, to all concern. Would you please consider making a textile full contribution? I would really appreciate your support.

Thanks again.

Don Raineri: Thank you.

Tom Couch: And thank you, 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 fathers, go to 21st century dads.org. That’s 21 St. Century dads.

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. Please be sure to register for the special father’s network, biweekly 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 story, please send an email to David at 20%. Dot org. If you

Tom Couch: enjoyed this podcast, please be sure to subscribe on iTunes or wherever you listen. But dad to dad podcast was produced by couch audio for the special father’s network.

Thanks again to Rubin law for supporting the dad to dad pod. Call Rubin law at eight four seven two seven nine seven nine nine nine nine and mentioned the special father’s network for a free consultation. 8 4 7 2 7 9 7 9 99