019 – How Brian Page, VP Shepherds College, raised a son with a brain bleed.

Transcript:

Dad To Dad 19 – How Brian Page, VP Shepherds College, raised a son with a brain bleed.

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. That’s 21stcenturydads.org.

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

Tom Couch: And I’m Tom Couch. Today David talks to special father Brian Page, Brian and his wife, Natalie, our parents to three young adults, including 21 year old Benjamin, who was born with a brain bleed that I said, so dad, in some ways that has kind of a miracle.

Brian Page: And he said, well, you know, as physicians, we don’t really use that terminology, but he’s doing well. He’s not supposed to be doing.

Tom Couch:  Brian talks about the challenges of raising a child with special needs.

Brian Page: I think part of our perspective is that we want to love them unconditionally and not put a ceiling over his life and just to have expectations that he was going to continue just to grow and do everything that God really had for his life.

Tom Couch: And through hard work and lots of encouragement, Benjamin has gone on to live a productive, busy life.

He’s now a student at Shepard’s college.

Brian Page: It was just overwhelming in a positive sense to walk around this campus, to see these other students that had. A variety of special needs to know that there was something that someone thought of a place like this, that our kid, whether he went there or not could potentially do.

Tom Couch: That’s all on this Special Father’s Network podcast.

Brian Page: Thought back to what the doctor had said. Mr. Page is never going to walk this kid running a race and he won the race.

So here’s David Hirsch’s conversation with special father Brian Page.

David Hirsch: I’m thrilled to be talking today with my friend, Brian Page of Homewood, a father of three and vice president of advancement at Shepard’s college.

Brian, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Brian Page: My pleasure. Thank you.

David Hirsch: You and your wife and the Natalie had been married for 31 years and are the proud parents of Harold now 25. Autumngrace is now 18 and Benjamin 21 who was born with a brain bleed.

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

Brian Page: I grew up in lots more Illinois, South of Chicago in the suburbs. My, um, father was a physician he has since passed. My mother was a, is now a retired college professor, still living. Um, I have a one sister, so it was just the two of us.

My sister is a, uh, attorney. That’s worked for the state department. She was appointed by the Obama administration to be ambassador for the first ambassador to Sudan,

Sudan, the country Sudan in Africa and Africa. That’s all my dad never told me no. She, um, gets a Harvard law school grant. Um, two years younger than I am.

But, um, obviously we were very, very close growing up just our, this past weekend. So really, I just had a very kind of, um, suburban lifestyle. My parents were the first African American family to move to Passmore. Um, so that was kind of historic back in the sixties. So in 1965, they had decided to move from the city to the suburbs and kind of a whole story really with them.

But how. Based on red lining and things like that. Nobody would, um, give this black position alone. And my dad had decided that they just would no longer try to find a house in the suburbs. It looked like they were just estimates continue to be in the city. There was a story in the newspaper and a local banker in Chicago Heights.

Read the story and called my dad on the phone before a voicemail and cell phones. And he said, dr. Page, I saw a story in the paper about you’re looking to buy a house in the suburbs. My dad said the, I said, um, we haven’t found anybody. That’s willing to finance the house for us. And so he said, if you’re still interested to help personally make sure that loan gets done.

So Paul, um, so that ended up happening. My mom is still in that house today.

David Hirsch: So that’s fabulous. So just to be clear, you were the first African American family in plus more? Correct. And what was that like? Can you think back to what it was like growing up there?

Um, was it awkward or what, what type of experience did you have growing up?

Brian Page: Was, was terrific for us. We were, you know, sheltered from a lot of things that really were going on, but there’s certain stories that really stood out that I shared, even during my dad’s funeral. Um, one was the news. My parents would get the sometimes and then sometimes it’d be delivered. Um, the delivery, the man would, um, drive.

And instead of just throwing in, you know, into the driveway, he would, um, my parents had a circle drive. He would, um, Sort of driving around the circle. He would actually drive across their grass and then throw the paper as hard as he could at the door at the window. Um, which just infuriated my father and my father were dead on the police and the guy would speed off in this red van.

So I remember that, um, our member, um, We used to get phone calls again before we’d have voice mails and things like that. And I’ve answered the phone and you know, my, my father is a general practitioner. This person would pick up the phone as a kid, and then he would say, um, your father is performing illegal abortions.

I didn’t, as a kid, know what abortion was. All I knew that sounded like my dad was apparently doing something that was illegal. My dad would pick up the phone and, you know, eventually tell us don’t be answering the phone, leave it alone. The philosopher was a great community. I was obviously the I’m the only black kid in school.

So that was, but I didn’t know any different. I mean, so, uh, foster is a very heavily Jewish community. It’s, it’s, you know, it’s changed over the years. I mean, I had great friends. Um, still keep up with a lot of people that I’ve known from back then. Um, you know, the community is small, you know, roughly 8,000 landlocked.

Um, but just, um, you know, always kind of a high school and all of them was, was just a great experience for the most part.

Okay. Well, that’s fabulous. I know that sister came to school. Then that meant there was a second Lac student then at the school.

David Hirsch: So did they think you were brother and sister or was that not initially?

Brian Page: Initially they didn’t think so because my sister was very fair skinned, so she looks like she could be maybe European and passes as something else. Okay. So we had a very interesting dynamic. Growing up.

Yeah. Well, you both have come a long, long way from that situation and not just from our football and, you know, think how much the world’s changed in our lifetimes.

That’s right. In a positive way. Right. And to add part of our growing up, I think what made the experience so rich, you know, with my mom being a social work professor, and she was heavily involved in many other nonprofits and. Well, if my parents were just very active and just, you know, just professional, you know, activities, and my dad was a big time golfer.

So all those other kinds of things that happen. But what helped I think for, for me and for my sister is that we got exposed to so many different things. I mean, as I said, um, you know, our friends were all different, you know, races and ethnicities and from different places and that traveled around the world.

And so we really were, um, just fortunate just to be involved in. You know, going to bar mitzvahs, um, are the friends that were, you know, attending Catholic churches. I mean, so it was just, it was just a great, um, you know, melting pot in a lot of ways in this little tiny community. And everybody knew one another, which was also nice.

David Hirsch: That’s was exciting. So I could jokingly say that you were a speck of chocolate in a vanilla world at the time.

Brian Page: You could say that and they would be absolutely true. That’s right.

David Hirsch: So thanks for sharing.

Brian Page: Oh, my pleasure.

David Hirsch: So, uh, how would you describe your relationship with your dad?

Brian Page: We had a great relationship.

Um, you know, my dad died in, uh, September, 2016, but the, um, he was, you know, he was professional, but he was just one of the funniest people I’ve ever known. I mean, um, life of the party, um, very engaging and. Uh, but he was splitting with strict, I mean really had a very kind of iron fist, um, high expectations, you know, when it came to, you know, education and things like that.

I mean, because, you know, he, um, was from Atlanta basically, you know, grew up in the inner city and just was blessed with all the different opportunities that, you know, really happen. Having for me, went to college on a get played saxophone. So. At unmusical scholarship, you know, to go to college in Atlanta, which is where he met my mother, but we just, uh, we played, that’s kind of, our bonding was golf and tennis as a kid, but we could just pretty much talk about anything.

I mean, he was very active. It was nice to know that she had a dad that, I mean, that I saw consistently going to work. I used to think that especially when he was running his own practice, you know, that, you know, why don’t you just take today off? He said, well, Brian, if I don’t work. I don’t get paid when there’s patients that are waiting and expecting me to, to be there.

And I, you know, just was helpful. I used to not understand as a kid, why you would come home and you could appreciate a day, but you know, it’s. They’re older and I would think you’d come home and just say that, you know, long day I was just exhausted. I’m thinking you just have people coming in and you’ve got to set the scope around your neck.

How could you be tired? You know? But then I went to his office and really got to see how we engage with people. And there’s so many people that, you know, he would put people at ease. I would sit outside and his, in his office and here I’m in the, you know, patient’s sitting in his arm, you know, in the room with them.

They would be laughing and, you know, he would just address things that they really had going on health wise. And it was just a great thing. But then I saw why, well, no wonder you’re tired. I didn’t understand it until I was really an adult myself. But you know, the emotional energy that you expended, you know, caring about people, you don’t really, this both my parents really were caregivers, you know, before people really were doing.

House calls. My dad would go and visit people. People would know he was a physician. Everybody called him doc, you know, so we can be out on the golf course playing and somebody wasn’t doing well. And he would step in to go ahead and, um, you know, help them. So. You know, it was just great to see was that he was a terrific example.

Someone that worked hard, loved people, cared about what he did.

David Hirsch: So that was a great legacy that he left behind as far as anything he said or did that comes to mind advice that he gave you maybe about being a dad or just about character.

Brian Page: One of the biggest things, um, that I, I thought that, you know, he really would talk about being present, you know, just, you know, being there and that’s, that’s what I saw.

He would, he’d go to work and he’d come back home, you know, and just, um, spend time obviously with, you know, friends and family and stuff. But the biggest thing was that he was, he was there and I think that’s kind of what without saying it, that I really also saw. So that was probably one of the biggest pieces of advice that he really gave me.

David Hirsch: Okay. That’s awesome. So if anyone else, uh, that served as a father figure, uh, while you were young or as an adult for that matter,

Brian Page: was it, um, as adult mom, Natalie’s dad, um, whose whose name was Benjamin? Um, he also died. He died, um, the year that Benjamin was born. So Benjamin was born in 1996 and, um, Natalie’s dad.

We found out that he had cancer, um, lymphoma. Um, and so that was really difficult. So he ended up, uh, Benjamin was born in June of 96 and. Her dad died in October of 96. So it was, it was really tough, but, um, he had a profound impact on my life. Um, he was like another father, um, different than my dad. Um, but yet he was a real visionary, um, compassionate that, you know, we got a chance to spend a lot of quality time together, traveling together.

And which part of the reason Benjamin really was named after him was just. The example that really, he said, I mean, it was a terrific dad. I’m always involved in different things, kind of person. You could just sit down and I’m just kind of like what we’re doing. Just have just a relaxed, casual conversation talking about life.

He was well-read new things that were going on in the world. I mean, just seemed like he touched so many different things and people just loved him. Everybody called him Benny and he, he quietly did things behind the scenes. He wasn’t a, um, A showy person, somebody needed food, or maybe they were struggling to pay their rent or kid didn’t have, you know, some gifts for Christmas.

He would do things like that, you know, through his church. And personally didn’t want anybody to know. But just to make sure that things like that were really taken care of, and I just found it really impressive and I just loved him. And since his passing was, was very difficult because it was a white person that if I had things going on with work or family, or, you know, just trying to navigate different things, he, the person you could talk to about anything.

Yeah, high integrity. Confidential was, it was, he was very, very cool.

David Hirsch: Only very fortunate to play a role in your life, even though it was cut short by his stuff. Yes. Premature death. Yeah,

Brian Page: absolutely. You have to be in your fifties and pass that early. That was very difficult.

David Hirsch: Yeah. Well that strikes pretty close to home.

Was somebody at the fifties now. Right, right, right.

Brian Page: Exactly. Well, the other part I’ll add is that the impact that he had even, um, when he was in the hospital, Benjamin was born. We were able to bring Benjamin to the hospital and with my oldest. And then it probably make me emotional just to say it. And Natalie just held a Benjamin up to him.

And then she just said, Dan it’s it’s Benjamin. And her dad had been praying because of, you know, which we’ll get to, but with Benjamin’s situation and he’d been praying and then he looked at him, he just said, he’s going to be okay. And not long after that, he passed plow. So it was really kind of a powerful, almost a biblical kind of a moment that, you know, he saw him almost like he was holding on to make sure that.

You know, the Benjamin being in, you know, you know, and I see you and, you know, the prognosis didn’t look good. I mean, it’s so really was really pretty amazing, you know?

David Hirsch: So anyhow, that’s very powerful. Thank you so much for sharing. So let’s talk about, uh, special needs and we’ll start with your personal experience with special needs before Benjamin was born.

Did you and Natalie have any connection to the special needs community?

Brian Page: None whatsoever.

David Hirsch: Zero, zero pop. So, what was your first reaction upon learning about Benjamin’s diagnosis?

Brian Page: You know, for me, I think, and it’s probably just on my personality, at least, at least my personality and how I’m wired. I kind of almost go into just, um, kind of, um, stop the ship from rocking mode.

So Natalie was really just, um, completely thrown off base. You know, we had already had, you know, our older son had already been born. So Benjamin literally was, you know, roughly. Three and a half, four years behind, you know, our oldest Harold, the first heart was the fact that he was premature. So she had only, it really was, it was an emergency Csection.

David Hirsch: So premature was it.

Brian Page: Spectrum was born at 32 weeks. So two months premature. And what had happened, we had gone for, um, just a regular, you know, doctor check. And when we got to the doctor that particular morning, the long story short was that. The doctor you could tell, he was concerned, didn’t know exactly what was going on.

And he just said, um, you know, I’d like you to go back home for a little bit, just kind of rest, get something to eat and then come on back. Well, he told me in the hallway, he said, I’m not really hearing much breathing. It just seems like, um, you know, your baby is not really having a lot of activity. And so he said, so don’t be alarmed.

I mean, until he’s trying his best to kind of keep us calm, you know? And so of course Natalie’s asking me then the car, what was going on. And I said, you know, the was just kind of concerned. You know, it seems like the baby’s not really moving much. And then she’s crying and the cars were going home. I have to get her something to eat.

He said, at least eat a banana or something else. And then they have you come back. So he said, before you come call me. And so we called on the phone before we left the house. And then he said, uh, well, he said, you know, Mr. Page, don’t get the alarm, but I’d like you to get here as soon as possible. We’ve already gotten a room prepared for you.

We’re going to have to go ahead and do an emergency scene segment. So I called my mother in law and my father in law, my parents, everybody, all the people that we knew as people just to be praying, trying to keep Natalie calm because she’s, my wife was just inquisitive by nature. And so the questions were just flying.

Of course, I didn’t have a lot of answers. So that was really the stunning part, because then we got there and then now he’s asking the doctor what’s going on. And he said, your baby’s breathing is continued just to slow. So we need to get him out. And then she just like, well, what do you mean? You know why it’s so early?

It’s, you know, it’s like two months and then he just said, he said, mrs. Paige, she said your baby’s dying. We have to, and then that just shocked madly into like, she just sat up and then she just like, Oh Brian, and she’s, she starts crying. And then they’re getting her prepped and take her off into the room.

And, you know, I had to step out and then call, you know, the other relatives and let them kind of know what’s going on. My inlaws got on a plane, um, immediately, just so they could go ahead and fly down. So I think for us, of course after that part, it was a relief that, you know, when he came out. You know, and obviously that he was breathing and you know, he’s crying.

We’re thinking that it’s, that it’s all. Okay.

David Hirsch: How big was he when it was born? How many, how much did he weigh? Three pounds.

Brian Page: Nine ounces. Wow. That’s really tiny. Yeah, so he was, yeah, very, very small. My daughter ended up being smaller than, and then he was, um, which

David Hirsch: she should go full term.

Brian Page: She was born at 28 weeks.

I’m like learning more about me David, than you could’ve ever imagined. And Natalie tried exactly part of it. And I hope I’m not spinning this in the wrong direction. But for our autumn grace, then to be born at 28 weeks after knowing what we’ve gone through with Benjamin, you know, there was a real fear, you know, analogous comments, where are we going through this all over again?

Because it was kind of a debate. Do we even take a chance and having another child, you know, after Benjamin? Cause they never really sure what exactly. Caused the bleed and F and everything else. And so an autumn graceful was two pounds, two ounces. Oh my gosh. We were putting like doll clothes on her.

Cause she was that tiny can hold her in my hand. It was just unbelievable. So with Benjamin, it was just the hardest part was, you know, once, once he was born thinking that he’s okay only to find out that his ventricles not working. We didn’t know anything about shuts, what that really meant, you know, having to go ahead and basically tap into the top of the brain checking fluid levels.

The question was, is it going to be able to function? They were saying that potentially, you know, that he may never see, never walk, talk, sit up rollover, um, could be blind, could be deaf. I mean,

David Hirsch: those are all the things they said.

Brian Page: Yes.

David Hirsch: Early, early on,

Brian Page: early on. And it was all in the report, which. Natalie actually kept that report as hard as it was.

I think she cried all over the report. And then after that, she kept that in her Bible for years and I’m just will continue just to really be, be praying over that. So it really was more of a shock. And I can’t say because we were devastated or anything, we just didn’t know what was ahead. And that was the hardest part.

It was just this big unknown. And we already have this three, four year old little boy at home. That was full term and was healthy and active. And now we’ve got this completely different situation of trying to explain to him and, you know, what does that really mean? You know, for us as a family. And it was just a, a line of questions

David Hirsch: that we’ll just to recap, he is born two months premature, correct.

He weighs three pounds, nine ounces, and he has a brain bleed, which. You had to have a shunt put in to help the fluids circulate. How long was he in the hospital and the ICU or in the hospital and Tuttle?

Brian Page: Uh, almost like to what his normal term would’ve been. So probably for about two months that he was in the hospital.

David Hirsch: So they stabilized him. Right. He started to grow. Correct. And no develop. And do you remember what it was like when you first brought him home?

Brian Page: Yeah. It was a panic in a lot of ways because you’re, as you know, as a dad yourself, you don’t really, you already have this tender little being that you are nervous, just even putting in a car seat and infant car seat, and then driving home and not wanting to even go ahead and hit a, you know, a bump in the road.

And then you’re thinking, okay, we also have this child that. Has, we didn’t know if it’s a condition, if this was going to basically resolve it now that he’s had the shunt placed, what that really meant. We were so ignorant in so many aspects that help was because my dad was able to talk to me and explain a lot about, you know, what a shot was.

The doctor was very good as well, what this meant and what would happen. But I think the anxiety we had was that they talked about different things about if there’s a shot malfunction or like we hardly even understand what the shunt is. What do you mean? If there’s a malfunction, if there’s a malfunction, um, your baby may end up having projectile vomiting.

His eyes may roll in the back of his head. I know it’s just, it’s just mindblowing. And you’re like, okay. And then, you know, it was hard. Could go ahead and slow. We’re wondering, does he have to come home and have a monitor in the bed? Do we even let him be in another room by himself? You know, you’re still talking about, you know, just the whole thing with infant crib syndrome and you know, children passing.

And so all of these things are like kind of swirling through our heads. And then you add in the other piece that. He may not crawl, may not be able to really go ahead and communicate and let you know what’s going on. If he’s experiencing any pain, you’ll have to be watching to see if it looks like there’s any potential swelling in his head.

It was honestly, David, it was, it was overwhelming and we’ve got another child and we’re living in Atlanta. We have no other support other than neighbors. Um, so it was just, um, it was hard to fathom. And I think literally it was almost like we’re trying to walk. Day by day, not knowing what to do, not really know how to do it.

Asking questions, sitting in a CPR class, having to learn how to, if his heart were to stop, you know, just what to do. Yeah. How to resuscitate them. So it was, um, difficult. It’s understanding.

It sounds like a overwhelming, I can relate in a very, very small way because I imagine one day he’s in the hospital, it’s hooked up to all these monitors and then say, Mr mrs.

Page, good news cringe. Woman’s going home. They take all the monitors off and they say, there you go.

That’s exactly right.

David Hirsch: It’s like, well, wait a second. Why are they need all those monitors just a couple minutes ago? And that he’s able to go out into the real world without all that stuff. That’s right. So our second child, our daughter, Amanda was a set of twins.

Um, she was conceived as a set of twins. The other didn’t make it, it wasn’t viable. So high risk pregnancy. Similar situations. He was delivered at 32 weeks. Wow. 3.6, three pounds, six ounces, I think was the way so very similar. Wow. And she was in the hospital for weeks and you know, a lot of drama going on around that.

And then one day they just said, okay, take all the monitors off. Here we go. It’s time to take your daughter home. It was like, well, are you sure?

Brian Page: Right, exactly. And then you don’t know, as a parent. Are we ready? Because there’s such a safety in that hospital environment when they’re really getting around the clock care, someone is watching those monitors.

I know when Benjamin came home, that was one of the hardest transitions for us is because he was, you know, the nurses. I mean, I’m sure nurses say this about all babies. Like, Oh, they’re such a cute baby, you know, but they kept on talking about just what an adorable little boy was. And so they would come in at night, you know, in the night shifts.

And they’re all playing with them and just, you know, just everything you can possibly imagine. So when we bring them home, At two in the morning, you know, when we’re like exhausted, which should be in bed asleep, he’s wide awake, you know, just like this was daytime for him. They didn’t have all the lights on, you know, just the ICU.

And so that was another whole part of the adjustment. And you have to making sure that, you know, get them on a normal feeding pattern. Like, well, you guys didn’t really even do that when it was in the us.

David Hirsch: Well, it’s wild, it’s wild. So it sounds like some of the things that you’ve learned about what. My occur were rather dramatic and, uh, to be challenging to not only here, but to be in that report that you were talking about, what type of advice did you get early on?

Good or bad, but now you have the benefit of looking back.

Brian Page: Wow. Yeah. I can tell you both, you know, the hardest piece was as the time went on, he’d have shunt revisions. He sands shot malfunctions. Um, he’s had, uh, at least twice that he had a malfunction that he had to be helicopter. One was while we were, um, on vacation, driving down to Florida, it appeared that he was just non-responsive while we were in it.

At that time we had a band, we were in Georgia. And so we were stopping at the gas station. Benjamin was just kind of just staring off in one direction. Wouldn’t turn his gaze or anything like that. And we didn’t know. That potentially this could be a seizure. We just, just were not familiar with all these things that could happen.

If you have a shot,

David Hirsch: how would he have been at the time?

Brian Page: Probably three or four.

David Hirsch: This was in a car seat.

Brian Page: Yeah. Right, right. Yeah. Okay. And so we ended up stopping at this particular rest area. I took him in the bathroom, just kind of, you know, put some water on his face and just was kind of talking to me. It really, wasn’t still wasn’t really responding, you know, just seemed like he was almost kind of zombie, like.

Took him to a hospital, that hospital that was in the kind of in that area. And once, once we got to the hospital, they didn’t really know what they could do. And they, so we had to contact the neurosurgeon. The neurosurgeon said, I think he’s going to have to be taken to one of the other hospitals, which was in a university of Florida’s campus in Gainesville.

And so he ended up being helicoptered from the hospital in Georgia to Florida. We had to then drive behind the helicopter. Which was a good from where we were. It was probably two and two and a half hour drive and just pouring rain. Natalie’s, Natalie’s crying in the car. My daughter starts singing, you know, some, some song, which was I’m just Jesus, Jesus how I trust you.

we then all are crying in the car. It was almost like the crime was worst than the rain cause I could hardly see, um, Natalie told the helicopter pilot, can you let us know at least when you land, because she was afraid that were they even going to be able to get through the storm? She is. So they did call obviously cell phones at that time called their phones.

They’d landed. They were treating them.

Frantic just seemed like it opened up on the interstate when we were driving, which was the strangest thing. Like, like there was almost nobody out on the road who probably probably wasn’t awake cause the weather was bad. And so, but it seemed like we made, you know, whatever the time would have been.

Let’s say it was three hours. It seemed like. We’ve made it into or something. I mean, I don’t remember driving like a crazy person, but I mean, I know we were just trying to get there as quick as we could and, um, called her friends in Atlanta. They drove it with Valdosta, Georgia. That’s where we were. Our friends drove down because we had stopped to see them drove down from Atlanta, stayed at the hotel with us while Natalie and I could deal with Benjamin.

So that was one of his helicopter rides. Another time was here in Chicago, he was having a malfunction and Natalie kind of just froze. He just kind of went into the zombie stage and. The very things that they said he was, he was projectile vomiting. His eyes kind of started to started rolling in the back of his head down.

He was like trying to figure out what to do. Cause we heard a thump in his room. And so he had just fallen out of the bed. And so I went in there and picked him up and then, you know, brought him in our room and, you know, kind of trying to check and see what it’s doing. And now it’s like, you know what we need to do?

And I was like, yes, yelling, call nine one one, call nine one one. So the ambulance showed up at the house and they rushed him to the nearby hospital where we live. And then he ended up being the helicopter too. University of Chicago, which is where his position is, I’m the neurosurgeon. So those are some of the things that have just been difficult.

I guess it’s kind of a long answer for your, for the advice part. What happened with those helicopters? Which of course was a tremendous expense. The one nurse at one point had said to me, she said, um, this has gotta be a lot of money that you and your wife have to be paying for it. All these medical bills and things like that.

And I said, I said, yeah, so, well, you know, you do what you have to do for your, for your child. And she just said, I’m just seems like it would be better than if he didn’t make it. And then I just said, excuse me. And then she just said, well, you’re just racking up all these medical expenses. And I said, my dad’s a physician and I’ve never known anybody to be in the medical field that would make such a callous comment.

She said, well, I’m not trying to trying to be mean or anything. And I said, you know what? I’d have to pay for the bills, whether he made it or he didn’t make it, I’d rather pay for him that he made. And then she just said, well, teachers home kind of walked away. And.

David Hirsch: What a rude thing. Yeah. It was

Brian Page: just, I thought, regardless of a, of a kid’s condition, how would you say something like that?

I’m like you’re in the wrong field. I mean, that’s not sensitive or compassionate at all, but others really kind of came around us. I mean, you know, we’re fortunate, we’ve got a real. Great, you know, group of friends and community of people, you know, through our church, in different churches, we’ve been a part of, you know, over the years, cause we’ve moved that said, Hey, we’re going to really be praying for them.

Um, colleagues that I had bosses people would make meals come by and just it’s, wasn’t so much what they said, but their actions just show that, Hey, we’re here to support you. We know that this is really difficult and you know, just, I felt like just kind of loved on us and really we’re kind of a community.

The other thing I’ll say is because we have just kind of a interesting story, because we were driving home from when we first were bringing Benjamin home from the hospital in Atlanta. And while we were kind of coming and getting closer to the house, there was a clearly a mother pushing a child that was in a wheelchair down the scene, on the sidewalk, on this, on the side of the road.

As soon as Natalie now, they saw it, she just started crying and I just said, what’s wrong. Are you okay? And then she said, I just felt like. I heard Satan, just say to me, that’s going to be your baby. And you know, again, we didn’t know what Benjamin’s life would look like down the road. And I said, they only said, we’re just going to go ahead and we’re going to pray for that woman and her child.

And so we just prayed out loud in the car just that God would really just bless that family and any other families that might potentially be impacted, you know, with again, not knowing what it was going to mean for our family. But other families that they would at one day, see some light and some grays and cause, cause you could almost look and no matter how bad we think it is with Benjamin somebody else’s situation is worse.

It seemed like that really turned things, you know, just for us as a couple, you know, God, you saw fit for whatever reason that this is what we have. And this is, this is our Latin life. And we’re going to just walk it out. We’re going to be the best possible parents. We can not just to Benjamin, but granted we didn’t have our daughter at the time, but you know, to our kids, to our family and just continue just to love them.

And I think part of our perspective is that we want to love them unconditionally and not put a ceiling over his life and just to have expectations that he was going to continue just to grow and do everything that, um, No God really had for his life, which has been kind of cool to see.

David Hirsch: Very powerful, very powerful.

Thanks for sharing

Brian Page: and forgive the emotion

David Hirsch: or some of the more important decisions that you and Natalie have made raising three children, including one with special

Brian Page: needs. We know that some of the, the challenges cognitively that he really has. And so we work with that, but, you know, in terms of behavior and expectations, we’ve always said, These are the things that you’ll do and that you’re expected to do and how you talk to people and how you treat people and responsibilities.

And if there’s things that he couldn’t do, then we could kind of work around that, but we didn’t want it to be that he was just treated as a quote, unquote, a vegetable, and that he’s just going to be off in the corner and no kind of interaction, no kind of challenges. So I think that’s been huge. It’s been huge for him, but I think also for us as well.

David Hirsch: So. You made reference to special Olympics. I was going to ask what supporting organizations that your family have been able to rely on and what role has special Olympics played?

Brian Page: Oh, huge. Special Olympics was just a godsend in so many ways because you, the challenge that special needs kids oftentimes have.

Is, they don’t have their own community. They can be isolated. And it’s hard to go ahead and say, Oh, this is a child that it has a shunt. Let’s see if we can find another kid that also has a shot. I mean, it’s so special Olympics for us was terrific because there’s been, got to participate. And then I remember him.

He was in one of their track meets the hard thing with special Olympics is that if you’re doing some of the races. They still use the pistols at the starting line. So that was a little stunning because he’s very sensitive to sound. He doesn’t like fireworks too, just the boom sounds. And so he’s standing at the starting line and, um, you know, I’m there with Natalie and my other two kids and, you know, they fired the pistol and you know, and this kids all start running well, Benjamin doesn’t start running cause he’s standing there covering his ears with his hand because he knew the sound was coming. And so then I was just like run!

That was exactly how it was. And so then he, the other kids, you know, I’ve already started in they’re running. So then Benjamin takes off and he’s running behind him, you know, keeps on running, keeps on running it. Eventually it catches up. He passes them and then he wins the race and we’re all like, you know, celebrating and crying.

This meant that he was going to be able to go to state. He was getting a gold medal. And so while we’re all celebrating and high fiving in the stands and everything, we look out on the track. Well, no one told them he’s still running. Oh my God. I look up and Benjamin is like halfway around the track for something that was like a hundred yard dash, still running, still running, still running all the way on the other side.

We’re way over here. And so then Madelyn’s just like, he’s still running. And I was just like, Oh, no. So of course I’m not supposed to be an event. So I take off running on the outside of the track and I’m trying to run bad stop and he’s still going, not looking back. It was doing exactly what we told them.

Run. Don’t look back,

David Hirsch: keep on going.

Brian Page: So eventually I catch up with them and stop them. By this time, when I finally get back over there in the ceremony, starting to go ahead and hoarding the metals and everything like Benjamin Page, and he’s not there on the platform. And I’m like, he’s coming, he’s coming.

Well, but videotape or that it’s the funniest thing. I mean, so, and here I go from just sheer joy of like sobbing as a dad. Um, I’m, you know, really I have to track and then like, they get like, I’ve got to run after him. And since then, it’s like, I shifted to embarrassment. Like, Ben, what are you doing? But I think the whole thing with special Olympics has been terrific.

Cause he has been able to do. Special Olympics, swimming, track bace. I think it is about people. He’s had all these different opportunities and just the, the fellowship and the teamwork and the comradery has just, um, you know, and, and again, kind of their whole model, you know, that really everybody is a winner.

I mean, so that’s, that’s just been fantastic. And so it’s been great to. To really be a part of that. And we’ve seen his growth, the track part, why that was so powerful for our family, not him winning or the continuing to re run around the track was because I thought back to what the doctor had said, mr.

Page is never going to walk. And I said, this kid is running a race. And he won the race and he’s still running. And you said he wouldn’t even walk. So.

David Hirsch: Yeah. Well, I don’t want to rail on the medical community, but, uh, they’re just wrong to be able to plan all these negative seeds.

Brian Page: That’s right. That’s right.

You know, and

David Hirsch: I don’t think they’re doing it a malice or to be overly negative. Maybe they’re covering their tracks or they’re

Brian Page: trying to create a,

David Hirsch: I don’t know if it’s realistic expectation, but you know, to. Paint a vivid picture of the range of possible outcomes, many of which never come true. Correct. So instead of imagining the worst or thinking it’s going to be as bad as it is, you know, things usually don’t turn out that way.

So if you can discipline yourself, knowing what you know today to not be distracted by all the potential negative outcomes, one of the ways I phrase it as don’t preaward your words.

Brian Page: Oh, that’s good. Right. It’s like,

David Hirsch: can’t control the future. You can’t change the past. So just be in the moment and that’s right.

Focus and, you know, God will try, we’ll determine what the outcome

Brian Page: is. Well, the thing that, um, our, the neurosurgeon in Atlanta, he had told us, and that’s where my dad helped me from a medical standpoint. So my dad said, you know, I would say Dan, I was like, you know, they’re saying, he’s not going to be able to do this and do this and all these different things, you know?

So we celebrated along the way, every single thing, you know, the bus driver, you know, when people would make fun of, you know, your kids riding the short bus and I’m like, We’re excited that he’s riding the bus and how the, the bus driver painstakingly day after day would help management with his fine motor skills to Fasten the seatbelt.

Cause he’d get on and then she’d get up and she’d go ahead and strap him in. And they mentioned she’d worked with them on that. She helped them little things like. You know, when he’d come home, like we’d be at home. One of us would be at home and he’d get to the door after afterschool and walk up to the door and he couldn’t pull the handle and push the button on the screen door at the same habit, same time, because it was two different things.

And she’d worked with him on that. And so we celebrated when those things finally happened. But to the point when the neurosurgeon had said, at one point we took him back for a cat scan and Benjamin was walking to walking down the hall. And dr. Boydston was, his name is great. Great guy. And he just said, um, he said, who’s, who’s that?

And Anna said, that’s Benjamin. And he teared up and he just said, that’s Benjamin. And she said, yeah. And he said, mr. Mrs. Page, I kind of tell you, I never thought he would walk. And I told that to my dad afterwards. And my dad said, Brian, he said, Benjamin had the highest level bleed that you can have medically.

He said, if you look at those cat scans, which again, I I’m, no doctor can say I stayed at holiday Inn express. So I sit in, my dad was showing me, he said, look at all that gray matter. He said, that affects your function and your, you know, your ability and mobility, all these other medical terms, my dad was really using and he said, he’s not supposed to be doing what he’s doing.

And he said, so as a physician, he said, We’re trained to go ahead and just tell you, based on what we see based on all the research, this is not supposed to happen. And I was like, wow. And so then that really made me have a better understanding. It really wasn’t that some are like that nurse. Some weren’t really trying to be negative.

They’re just going by their training and it just really hit me. So in a lot of ways, and I said, so dad, in some ways, And Benjamin’s kind of a miracle. And he said, well, you know, this position is, we don’t really use that terminology, but he said, but he’s doing well. He’s not supposed to be doing. Yeah.

David Hirsch: Well, thank you.

So let’s talk a little bit about Shepard’s college located in union Grove, Wisconsin. It’s a fully accredited three-year postsecondary program for students with intellectual and or developmental disabilities. And I remember the mission is to prepare young adults with intellectual disabilities for appropriate independence, a level of self sufficiency that is aligned with individual strengths and guided by Christian values.

How did you learn about Shepherd’s college?

Brian Page: We had, um, Benjamin had an aid, a woman, um, that was just terrific. And she would talk about different opportunities when Benjamin was going to be finishing up high school or even after their transition program. And so one of the things that she had mentioned to my wife, a couple of different things, um, but one of them that she mentioned was this place called Shepherd’s college.

And she asked if we knew about it. And we decided that we would go in and kind of look into it really, really didn’t know much. But then we decided we would take a visit because the nice thing for us, it’s only hour and a half, two hours from our house. And just went up there to kind of just check it out because we were really trying to think about what his future would look like down the road.

If it meant staying with us, if it meant a group home, we certainly were not thinking about college, but because our oldest had gone on to college. And if you had a great. Three and a half years, cause he graduated early. We thought, man, it’d be fantastic. There’s some kind of opportunity like that for Benjamin as well.

So that’s really kind of how we got introduced really through this particular aide. And then we’re kind of blown away about what we found out after that.

David Hirsch: Excellent. So Benjamin’s been there for how many years?

Brian Page: Two years.

David Hirsch: So two years into a three year program,

Brian Page: correct? That’s exactly right.

David Hirsch: And what did you learn about Shepherd’s college that led you to take a job though?

Brian Page: I think what happened for me is once we heard about shepherds, not knowing that Benjamin was going to go there, it was just, um, overwhelming in a positive sense to walk around this campus, to see these other students that had a variety of special needs, um, to know that there was something that someone thought of a place like this.

That our kid, whether he went there or not could potentially do. You know, so the eventually, you know, we got to the place. So we started going through the process and thought this would be a great fit. You’d be able to, you know, experience college, like his brother live on campus, being away from home. Um, we were excited for him.

He was excited about it. We were crying as we were kind of experiencing the whole thing. And then probably a year later after he had already been there, one of their vice presidents. Had approached me because they were trying to do some filling of some positions. Their kind of leadership team was transitioning people in a good way.

They were retiring. And so he approached me and asked I’m just for some counsel. So it’s always funny when you’re doing consulting work and not getting paid. You’re just really giving advice, which may mean it’s worth what you’re giving. So he’d asked me at one point and I told them some things that they may want to consider doing.

They implemented those things and lo and behold it worked. And so, because it worked, then I, he came back to me a couple more times. We got together and then one day he just said, Hey, we’re looking for, um, a new vice president of advancement. Um, our current individual is going to be retiring in June. Would you possibly be interested in that?

So from what I understand, Shepard’s college has three program areas, horticulture, culinary, arts, and technology. Is this the only postsecondary school of its type.

As far as we know, um, others have gone and of course done research to try and find out what else is really out there. But the benefit of course, of being accredited and being able to offer financial aid has just been obviously huge for so many different families.

And it’s just unique because of the whole idea of appropriate independence, taking students and transitioning them year by year, first year in the dorm, second year into, on campus homes. And then the third year moving into apartments and taking on. You know, greater responsibilities, you know, eventually following chores and then learning how to go ahead and do their own cooking and cleaning and laundry.

It’s just been phenomenal just to watch them and see that, see the growth for all the students. One of the coolest things is then they’re actually sent out their admissions letter, which you could appreciate as a dad, same thing that I’ve experienced with my, my oldest son and out my daughter. And seeing these kids sitting there with anticipation that.

They’ve really wanted to go there and now they’re opening up the letter and like you have officially been admitted to shepherds college is just unbelievable just to watch and what a milestone that it really is. Yeah.

David Hirsch: So what impact has Benjamin situation had on a siblings?

Brian Page: A really large impact? Um, my oldest Harold.

He’s now married and married a young lady that he met in Argentina, um, on a missions trip, but we’re Benjamin really just touched Harold’s life. Obviously, other than just the fact of being his brother was when Harold, um, all through high school did several different missions, trips, um, being a part of a Christian high school.

So he went to. What Amala and Honduras in particular, after his Guatemala trip, um, he stayed at an orphanage and when he went to the orphanage, what he didn’t know is that they had all of these children, infants and toddlers, babies, and toddlers that, um, all had special needs and they were just drawn to him like crazy.

And so when he got back, he was really just kind of torn because he was he’s, he’s an athlete. It’s playing basketball and soccer and running track. And he just said, dad, um, I don’t know if I want to play basketball anymore. He was just crying. And I said, really what happened? He just said, I, I just can’t stop thinking about these kids.

And one of the children that he interacted with turns out also had a shunt like his brother. So that was really, um, just an incredible life changing experience for him. He did continue on with the sports and that’s how we ended up meeting his wife, who is a. Argentina and young lady from there and she used to do volunteer work there.

Um, so that’s really how Benjamin really kind of touched his brother with my daughter. She and Benjamin kind of grew up kind of side by side because of the developmental delays that he had. It caused them to almost be just, you know, best buddies. But eventually the gap started widening is. She grew in, you know, just in terms of her educational pursuits and her own learning and development.

And Benjamin of course, was not continuing just to grow at the same rate. And so the gap started to kind of widen and she almost became, um, a mom in some aspects swooping in and kind of doing everything for them. But then she, um, she was applying for scholarships at the various colleges cause she’s about to graduate from high school.

That was part of her narrative of really talking about her brother, how that shaped her, how it gave her a sensitivity and the compassion and kind of what she wants to do in life. And part of it is study English and go into law and then really be able to kind of touch on a lot of those other areas, um, including, um, you know, special needs and developmental disabilities, knowing that cause she has a heart in equity and, um, thinking.

Fairness and people being treated equally. So it’s been great. It’s been great just to kind of watch her development in that area.

David Hirsch: That’s fabulous. So what advice can you share with dads or parents for that matter about helping a child with disabilities reach their full potential for us?

Brian Page: For me and for my wife, it’s always been just challenging, Benjamin up.

You go ahead and Mike, you know, you shoot for the stars. You know, if you don’t hit the stars, at least you’re gonna fall someplace close for Benjamin. What we don’t want to do is ever kind of restrict him to go ahead and we’ve really made it a practice of not saying what he couldn’t do. You can’t do this, you can’t do that.

I’m to the point, you know, Benjamin would not be at Shepard’s college. I mean, we could look at certain things and say, okay, well he’ll never be able to drive. You know, realistically that may be the case. He may not drive with all the stimulus and other things they have to learn, but if he has a desire to drive, then I try to think, okay, how can I help him learn how to drive?

Does that mean driving up and down and you know, through, um, you know, The Dan Ryan, you know, and to downtown Chicago, probably not, but could he learn, you don’t buy, I’m going to a racetrack cause I take them out to a farmland and then let them get behind the wheel and show them what it means to go ahead and start and stop and break.

And maybe it’s not dealing with traffic lights and that could be possible just to maybe he learns how to drive and he never really has a driver’s license. You know, but he’s learned what it means to be behind the wheel, because I found that that can be so empowering. And when he does things like that, you can just see the grin breakout on his face.

Like, wow. Like I did that, I did that on my own. So I would tell any other parent, um, just don’t limit them. Sometimes the limitations on our kids that have special needs are the ones we’ve placed there. And, and it’s, it’s sad to say that I’m like, Oh, I, I don’t want to do that. Cause I wouldn’t want anybody to do that to me.

That’s fabulous. So why did you agree to be a mentor father as part of the special fathers network?

Honestly, David, it was like, it was a no brainer having mentors and a network for fathers and a place where someone could call and it could be safe. And just to say, you know what, I’m at my wit’s end. I mean, I think as a dad, I mean, we all get times that we’re frustrated.

I there’s times that Benjamin I’ve been exasperated. I’m no. A role model from that standpoint that you always have it together. You never get upset, but I think the other side is knowing that there’s a resource of someplace that you can pick up the phone, you could call and bounce, some ideas off of someone, get a sense of like, Oh, so you’ve been through that.

Or you understand that. Or, you know, what may be down the road for me. So for me, it resonated just in my heart and knowing that I’m in front of my own personal desire in life is I want to, you know, there’s a verse in the Bible that talks about Abraham. Abraham was blessed to be a blessing. And that’s part of what I really want to do.

I want to be able to help other people and that to sit there and think like, I figured it out, you figure it out. You know, that’s kind of sad if we’re not willing to kind of reach a hand down and say, Um, let me help you and kind of pass it on. They can benefit from it one way or another, just having someone to talk to.

David Hirsch: Awesome. Is there anything else you’d like to say before we wrap up?

Brian Page: Well, the biggest thing is I just I’m like Natalie grateful just to be a part of the podcast, but just what you’ve done, you know, by really connecting so many people together and having a heart for this, um, I think by you creating that, you’ve kind of allowed this to be put on a platform and giving a voice to the voiceless.

But the most important thing is really giving exposure to the world of special needs. Everybody’s situation is different, whether it’s a child, that’s a quadriplegic or autistic or down syndrome. I mean, you can, you know, visually impaired, you can go on and on and on. We of course see a lot of that at Shepard’s college, but.

Every one of these kids should have an opportunity and know that, um, you also were created in God’s image and God also has a plan and a purpose for you. And so I’m just, you know, just thrilled the fact that you have a heart to go ahead and say, Hey, I want to put this and make it known out there to other people, because in many ways, Um, the special needs world, I think is like the minority of minorities, you know, they can kind of be pushed off to the corner, ignored, not given the proper attention.

Um, because I know for Benjamin, he wants the same opportunities. He wants to one day get married. He wants to have a girlfriend. He tells me, enforce it and Collins, he was like, dad, you know, like I’m, I’m studying, you know, so I have to be focused and I’m like, well, Ben, it’s okay if you have a girlfriend, but yeah.

The big thing is they want to do the same things. I mean, so whether it’s driving and having a bank account and having a job and, you know, he’d love to be able to one day work at universal studios and, you know, he loves, it loves moody movies. And I’m like, in my mind, I’m trying to figure out ways. And my wife and I doing the same thing, how can we make this happen?

Not ways of saying like, well, you can’t move out to California. You can’t live on your own. We want to continue to let them know like. That’s possible. We’re not going to go ahead and stop it. We just have to figure out a way to make it doable.

David Hirsch: You have to adapt.

Brian Page: Adapt. Absolutely.

David Hirsch: So if somebody wants information on shepherds college, where would they go?

Brian Page: Well, we have obviously a great website, so someone can look at shepardscollege.edu. So, if they go on the website, they can see videos, information, all sorts of details about the college, about our students, appropriate independence. They can reach out to any of us. If they’re interested in a tour, the videos show kind of an overview of the campus.

We can see some of the housing, just various things that they learn, you know, through the horticulture and the culinary and the technology. And we’ve got wonderful staff. We’re willing to take people and show them around the campus, even as we’re in the process of. Looking at other sites where we can possibly start doing some branches and some other States.

So as of now, right now, we’ve kind of identified, um, Texas as being an area of Florida being an area because we are getting students that are coming from all over the country. They can certainly reach out to me. Any of our other staff, our recruiters, we’re excited and love talking to family is kind of helping them to understand really what the process really is.

That at any time and seeing also if they’re interested in volunteering and even potentially being donors.

David Hirsch: Excellent. So Brian, thank you for taking the time and many insights. As a reminder, Brian is just one of the dads who was created 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, do your own. Please go to 21stcenturydads.org.

Thanks again, Brian.

Brian Page: Oh, absolutely. My pleasure, David. Thank you.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process.

New fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers. Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids.

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

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

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