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.

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 are parents to three young adults, including 21-year-old Benjamin, who was born with a brain bleed.

Brian Page: I said, “So dad, in some ways that was kind of a miracle.” And he said, “Well, as physicians, we don’t really use that terminology, but he’s doing what 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 would love him 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 Shepherd’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 Fathers Network podcast.

Brian Page: I thought back to what the doctor had said. “Mr. Page, he is never going to walk.” This kid is running a race, and he won the race.

Tom Couch: 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 Shepherd’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 Natalie have been married for 31 years and are the proud parents of Harold, now 25, Autumn Grace, 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 Flossmoor, Illinois, south of Chicago, in the suburbs. My father was a physician, and he has since passed. My mother is now a retired college professor, still living. I have a one sister, so it was just the two of us.

My sister is an attorney who worked for the State Department. She was appointed by the Obama administration to be the first ambassador to Sudan.

David Hirsch: Sudan, the country Sudan in Africa?

Brian Page: In Africa. She gets a Harvard Law School grant. She’s two years younger than I am. But obviously we were very, very close growing up. I just saw her this past weekend.

So really, I just had a very suburban lifestyle. My parents were the first African American family to move to Flossmoor. So that was kind of historic back in the ‘60s. In 1965, they had decided to move from the city to the suburbs. It’s kind of a whole story really with them.

But based on red lining and things like that, nobody would give this black physician a loan. 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 destined to 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 how you’re looking to buy a house in the suburbs.” My dad said, “We haven’t found anybody that’s willing to finance the house for us.” And so he said, “If you’re still interested, I’ll personally make sure that loan gets done.” So that ended up happening. My mom is still in that house today.

David Hirsch: That’s fabulous. So just to be clear, you were the first African American family in Flossmoor?

Brian Page: Correct.

David Hirsch: And what was that like? Can you think back to what it was like growing up there? Was it awkward, or what type of experience did you have?

Brian Page: Growing up was terrific for us. We were 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. One was the newspaper my parents would get sometimes. Sometimes it’d be delivered. The delivery man would drive, and instead of just throwing into the driveway—my parents had a circle drive—instead 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 or at the window. Which just infuriated my father. My father would notify the police and the guy would speed off in this red van. So I remember that.

We used to get phone calls, again before we’d have voice mails and things like that. And I’ve answered the phone. My father is a general practitioner. This person would pick up the phone, and he would say, “Your father is performing illegal abortions.” As a kid, I didn’t know what abortion was. All I knew is that it sounded like my dad was doing something that was illegal. My dad would eventually told us, “Don’t be answering the phone, leave it alone.”

But Flossmoor was a great community. I was obviously the only black kid in school. But I didn’t know any different. I mean, so, Flossmoor is a very heavily Jewish community. It’s changed over the years. I mean, I had great friends. I still keep up with a lot of people that I’ve known from back then. The community is small, roughly 8,000 landlocked. But high school and all that was just a great experience for the most part.

David Hirsch: Okay. Well, that’s fabulous.

Brian Page: My sister came to school. Then that meant there was a second black student then at the school.

David Hirsch: So did they think you were brother and sister?

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. So we had a very interesting dynamic growing up.

David Hirsch: Yeah. Well, you both have come a long, long way from that situation and it’s just remarkable. And think how much the world’s changed in our lifetimes.

Brian Page: That’s right. And to add part of our growing up, I think what made the experience so rich, with my mom being a social work professor, and she was heavily involved in many other nonprofits. Both my parents were just very active in professional activities. And my dad was a big time golfer. So all those other kinds of things happened.

But what helped I think for me and for my sister is that we got exposed to so many different things. I mean, as I said, our friends were all different races and ethnicities and from different places and they’d traveled around the world.

And so we really were just fortunate just to be involved, in going to bar mitzvahs. Our other friends were attending Catholic churches. I mean, it was just a great big 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 that would be absolutely true. That’s right.

David Hirsch: So thanks for sharing.

Brian Page: Oh, my pleasure.

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

Brian Page: We had a great relationship. My dad died in September 2016. He was professional, but he was just one of the funniest people I’ve ever known. I mean life of the party, very engaging. But he was strict. I mean really had a very iron fist, high expectations, when it came to education and things like that.

He was from Atlanta, and basically grew up in the inner city, and just was blessed with all the different opportunities that really happened for him. He went to college. He played saxophone, so had a musical scholarship to go to college in Atlanta, which is where he met my mother. But kind of our bonding was golf and tennis as a kid. But we could pretty much talk about anything.

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

I used to not understand as a kid, why he would come home, and he’d just say, “Long day. I’m just exhausted.” I’m thinking, “You just have people coming in, and you’ve got a stethoscope around your neck. How could you be tired?” You know? But then I went to his office and really got to see how he engaged with people. And there’s so many people that he would put at ease. I would sit outside his office and hear the patient sitting in the room with him. They would be laughing.

And he would just address things 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 the emotional energy that you expend caring about people. Both my parents really were caregivers.

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. So we can be out on the golf course playing and somebody wasn’t doing well. And he would step in, go ahead and help them. So it was just great to see. He was a terrific example. Someone that worked hard, loved people, cared about what he did. So that was a great legacy that he left behind.

David Hirsch: Was there 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 is he really would talk about being present, just being there, and that’s what I saw. He would go to work, and he’d come back home, and just spend time obviously with friends and family and stuff. But the biggest thing was that he was there. And I think that’s kind of what, without saying it, I 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 did anyone else serve as a father figure while you were young, or as an adult for that matter?

Brian Page: As adult mom, Natalie’s dad, whose name was Benjamin. He died the year that Benjamin was born. So Benjamin was born in 1996. We found out that Natalie’s dad had cancer, lymphoma, and so that was really difficult. So he ended up, Benjamin was born in June of 96 and her dad died in October of 96. It was really tough.

But he had a profound impact on my life. He was like another father, different than my dad. He was a real visionary and compassionate. We got a chance to spend a lot of quality time together, traveling together. Part of the reason Benjamin was named after him was just the example that he set. I mean, he was a terrific dad. Aways involved in different things, that kind of person. He and I could sit down, and kind of like what we’re doing, just have just a relaxed, casual conversation talking about life.

He was well-read and knew things that were going on in the world. It just seemed like he touched so many different things, and people just loved him. Everybody called him Benny. He quietly did things behind the scenes. He wasn’t a showy person. If somebody needed food, or maybe they were struggling to pay their rent, or their kids didn’t have some gifts for Christmas, he would do things like that through his church, and he personally didn’t want anybody to know.

But he just made sure that things like that were really taken care of. I found it really impressive, and I just loved him. His passing was very difficult because it was a white person that if I had things going on with work or family, or, just trying to navigate different things, he was the person you could talk to about anything. High integrity. Confidential. 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 premature death.

Brian Page: Yeah, absolutely. To be in your fifties and pass that early, that was very difficult.

David Hirsch: Yeah. Well that strikes pretty close to home for somebody in their fifties now.

Brian Page: Exactly. Well, the other part I’ll add is that the impact that he had, even when he was in the hospital when Benjamin was born, we were able to bring Benjamin to the hospital with my oldest. And then—it will probably make me emotional just to say it—Natalie just held Benjamin up to him, and then she just said, “Dad, it’s Benjamin.” And her dad had been praying because of Benjamin’s situation. Then he looked at him and just said, “He’s going to be okay.” And not long after that, he passed.

So it was really kind of a powerful, almost a biblical kind of moment, that he saw him. It was almost like he was holding on to make sure, with Benjamin being in ICU, and the prognosis didn’t look good. I mean, it was really pretty amazing.

David Hirsch: That’s very powerful. Thank you so much for sharing.

So let’s talk about special needs. And we’ll start with your personal experience with special needs. Before Benjamin was born, did you or Natalie have any connection to the special needs community?

Brian Page: None whatsoever. Zero.

David Hirsch: So what was your first reaction upon learning about Benjamin’s diagnosis?

Brian Page: For me, I think—and it’s probably just my personality and how I’m wired—I kind of almost went into just “stop the ship from rocking” mode. Natalie was completely thrown off base. Our older son had already been born. So Benjamin was roughly three and a half, four years behind our oldest, Harold. The first part was the fact that he was premature, and she had an emergency C-section.

David Hirsch: So how premature was he?

Brian Page: Benjamin was born at 32 weeks. So two months premature. And what had happened, we had gone for just a regular doctor check. And when we got to the doctor that particular morning, the long story short, you could tell the doctor was concerned. We didn’t know exactly what was going on. And he just said, “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, “I’m not really hearing much breathing. It seems like your baby is not really having a lot of activity.” And so he said, “Don’t be alarmed.” I mean, he’s trying his best to kind of keep us calm, you know? And so of course Natalie’s asking me in the car what was going on. And I said, “The doctor is just kind of concerned. It seems like the baby’s not really moving much.”

And then she’s crying in the car, we’re going home, I have to get her something to eat. At least eat a banana or something else. And then the doctor wanted her to come back, and he said, “Before you come, call me.” And so we called on the phone before we left the house. And then he said, “Mr. Page, don’t get alarmed, 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 C-section.”

So I called my mother-in-law and my father-in-law, my parents, everybody, all the people that we knew, and asked them just to be praying. I was trying to keep Natalie calm, because 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, Natalie’s asking the doctor, “What’s going on?” And he said, “Your baby’s breathing has continued just to slow. So we need to get him out.” And then she just like, “Well, what do you mean? It’s so early? It’s like two months early.” Then he just said, “Mrs. Page, your baby’s dying. We have to.” And then that just shocked Natalie. She just sat up and then she’s just like, “Oh, Brian!” And she starts crying.

And then they’re getting her prepped and take her off into the room. And I had to step out and then call the other relatives and let them kind of know what’s going on. My in-laws got on a plane immediately. Of course after that part, it was a relief when he came out, and obviously he was breathing, and he’s crying. We’re thinking that it’s all okay.

David Hirsch: How big was he when it was born? How much did he weigh?

Brian Page: Three pounds, nine ounces.

David Hirsch: Wow. That’s really tiny.

Brian Page: Yeah, so he was very, very small. My daughter ended up being smaller than he was.

David Hirsch: Did she should go full term?

Brian Page: She was born at 28 weeks. You’re learning more about me, David, than you could’ve ever imagined. And I hope I’m not spinning this in the wrong direction. But for Autumn Grace then to be born at 28 weeks, after knowing what we’ve gone through with Benjamin, there was a real fear.

Natalie’s comment was, “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 after Benjamin? Because they were never really sure what exactly caused the bleed and everything else. And so Autumn Grace was two pounds, two ounces.

David Hirsch: Oh, my gosh.

Brian Page: We were putting like doll clothes on her. She was that tiny. I could hold her in my hand. It was just unbelievable. So with Benjamin, the hardest part was once he was born, thinking that he’s okay, only to find out that his ventricle’s not working. We didn’t know anything about shunts, what that really meant, having to go ahead and basically tap into the top of the brain, checking fluid levels. The question was: is he going to be able to function? They were saying that potentially he may never see, never walk, talk, sit up, roll over. He could be blind, could be deaf.

David Hirsch: Those are all the things they said?

Brian Page: Yes.

David Hirsch: Early on?

Brian Page: Early on. And it was all in the report. 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, just to continue just to really be praying over that. So it really was more of a shock.

And I can’t say 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—trying to explain to him, and what does that really mean for us as a family? And there were just a lot of questions.

David Hirsch: Just to recap, he is born two months premature, correct? He weighs three pounds, nine ounces, and he has a brain bleed. You had to have a shunt put in to help the fluids circulate. How long was he in the hospital, in the ICU, or in the hospital in total?

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

David Hirsch: So they stabilized him. He started to grow and develop.

Brian Page: Correct.

David Hirsch: 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 have this tender little being that you are nervous about even putting in an infant car seat, and then driving home and not wanting to hit a bump in the road. And then you’re thinking, okay, we also have this child that we didn’t know if it’s a condition that was going to basically resolve itself, now that he’s had the shunt placed—what that really meant. We were so ignorant in so many aspects.

It helped that my dad was able to talk to me and explain a lot about what a shunt was. The doctor was very good as well, telling us about 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 shunt malfunction, and we hardly even understand what the shunt was. What do you mean? If there’s a malfunction, your baby may end up having projectile vomiting. His eyes may roll in the back of his head. It’s just mind-blowing.

And you’re like, okay. And then it was hard. 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’re still talking about just the whole thing with infant crib syndrome and 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.

Honestly, David, it was overwhelming. We’ve got another child, and we’re living in Atlanta. We have no support other than neighbors. So it was just 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, if his heart were to stop, just what to do, how to resuscitate him. So that it was difficult is an understatement.

David Hirsch: It sounds overwhelming. I can relate in a very, very small way, because I imagine one day he’s in the hospital, he’s hooked up to all these monitors, and then they say, “Mr. and Mrs. Page, good news. Benjamin’s going home.” They take all the monitors off and they say, “There you go.”

Brian Page: That’s exactly right.

David Hirsch: It’s like, well, wait a second. Why did he need all those monitors just a couple minutes ago? And now he’s able to go out into the real world without all that stuff?

Brian Page: That’s right.

David Hirsch: So our second child, our daughter Amanda, was a set of twins. She was conceived as a set of twins. The other didn’t make it, wasn’t viable. So a high risk pregnancy. Similar situations. She was delivered at 32 weeks, three pounds, six ounces, I think was the weight. So very similar. And she was in the hospital for weeks, and 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. I’m sure nurses say this about all babies. Like, “Oh, they’re such a cute baby,” but they kept on talking about just what an adorable little boy he was. And so they would come in the night shifts, and they’re all playing with him.

So when we bring him home at two in the morning, when we’re exhausted and we should be in bed asleep, he’s wide awake. It’s just like this was daytime for him. They didn’t have all the lights on, just the ICU. And so that was another whole part of the adjustment. And you have to making sure to get him on a normal feeding pattern. Like, well, you guys didn’t really even do that when it was in the ICU.

David Hirsch: Well, it’s wild. So it sounds like some of the things that you learned about what might occur were rather dramatic and would challenging, 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, that now you have the benefit of looking back at?

Brian Page: Wow. Yeah. I can tell you the hardest piece was, as the time went on, he’d have shunt revisions and shunt malfunctions. At least twice he had a malfunction that he had to be helicoptered. One was while we were on vacation, driving down to Florida. It appeared that he was just non-responsive.

At that time we were in a van 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 were not familiar with all these things that could happen if you have a shunt.

David Hirsch: How old 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. And so we ended up stopping at this particular rest area. I took him in the bathroom, just kind of put some water on his face and just was kind of talking to him. He still wasn’t really responding, just seemed like he was almost kind of zombie like.

We took him to a hospital that was kind of in that area. And once we got to the hospital, they didn’t really know what they could do. 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 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 from where we were was probably a two and a half hour drive and just pouring rain. Natalie’s crying in the car. My daughter starts singing some song, which was, “ Jesus, Jesus how I trust you.”

We then all are crying in the car. It was almost like the crying was worse than the rain, because I could hardly see. Natalie told the helicopter pilot, “Can you let us know at least when you land?” because she was afraid they weren’t even going to be able to get through the storm. So they did call when they landed. Obviously we had cell phones at that time.

Traffic just seemed like it opened up on the interstate when we were driving, which was the strangest thing. Like there was almost nobody out on the road, probably because the weather was bad. So whatever the time would have been—let’s say it was three hours—it seemed like we made it in two. I mean, I don’t remember driving like a crazy person, but I know we were just trying to get there as quick as we could.  

And we called our friends in Atlanta. Valdosta, Georgia—that’s where we were. Our friends drove down because we had stopped to see them. They 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 went into the zombie stage. The very things that they said. He was projectile vomiting. His eyes started to started rolling in the back of his head.

Natalie was trying to figure out what to do. We heard a thump in his room, because he had just fallen out of the bed. I went in there and picked him up, and then brought him in our room. I was kind of trying to check and see what he’s doing. And Natalie’s like, “What are you doing?” And I was yelling, “Call 911.”

So the ambulance showed up at the house, and they rushed him to the hospital near where we live. And then he ended up being helicoptered to the University of Chicago, which is where his physician is, the neurosurgeon.

So those are some of the things that have just been difficult. I guess it’s kind of a long answer for the advice part. What happened with those helicopters, which of course was a tremendous expense, the one nurse at one point said to me, “This has got to be a lot of money that you and your wife have to be paying for all these medical bills and things like that.”

And I said, I said, “Yeah, well, you do what you have to do for your child.” And she just said, “It just seems like it would be better then 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 it.” And then she just said, “Well, to each his own,” and kind of walked away.

David Hirsch: What a rude thing.

Brian Page: Yeah. It was. I thought, “Regardless 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 came around us. I mean, we’re fortunate, we’ve got a real great group of friends and community of people, through our church—in different churches we’ve been a part of over the years, because we’ve moved—that said, “Hey, we’re going to really be praying for him.” Colleagues I had, bosses, people would make meals and come by. It wasn’t so much what they said, but their actions just showed that, “Hey, we’re here to support you. We know that this is really difficult.” They just loved on us and really we’re kind of a community.

The other thing I’ll say is we have kind of a interesting story. We were driving home from when we first were bringing Benjamin home from the hospital in Atlanta. And while we were getting closer to the house, there was a mother pushing a child that was in a wheelchair down the sidewalk on the side of the road. As soon as Natalie saw it, she just started crying. I just said, “What’s wrong. Are you okay?” And then she said, “I just felt like I heard Satan say to me, ‘That’s going to be your baby.’”

And again, we didn’t know what Benjamin’s life would look like down the road. And I said, “Natalie, we’re just going to go ahead and pray for that woman and her child.” And so we just prayed out loud in the car that God would really just bless that family and any other families that might potentially be impacted—again, not knowing what it was going to mean for our family. But for other families, that they would one day see some light and some grace, because 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, just for us as a couple. “God, you saw fit for whatever reason that this is what we have. And this is our lot in life. And we’re going to just walk it out. We’re going to be the best possible parents.” We didn’t have our daughter at the time, but to our kids, to our family and just continue just to love them.

And I think part of our perspective is that we would love Benjamin unconditionally and not put a ceiling over his life, and just to have expectations that he was going to continue to grow and do everything that 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: What are some of the more important decisions that you and Natalie have made raising three children, including one with special needs?

Brian Page: We know some of the challenges cognitively that he really has, and so we work with that. But 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 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 “vegetable,” and that he’s just going to be off in the corner with 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 your family has 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 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 shunt.” Special Olympics for us was terrific because Benjamin got to participate.

I remember 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, just the boom sounds.

And so he’s standing at the starting line, and I’m there with Natalie and my other two kids. And they fired the pistol, and the kids all start running. Well, Benjamin doesn’t start running, because 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 the other kids already started running. So then Benjamin takes off and he’s running behind them, keeps on running, keeps on running. Eventually he catches up. He passes them, and then he wins the race, and we’re all 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 him. He’s still running.

David Hirsch: Oh my gosh.

Brian Page: 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 Natalie’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. “Ben! Ben! Stop!” He’s still going, not looking back. It was doing exactly what we told him. “Run. Don’t look back, keep on going.”

So eventually I catch up with him and stop him. By this time, when I finally get back over there, the ceremony is starting to go ahead, and they’re awarding the metals and everything like that. “Benjamin Page,” and he’s not there on the platform. And I’m like, “He’s coming, he’s coming.”

David Hirsch: Do you have videotape of that?

Brian Page: It’s the funniest thing. So here I go as a dad, like sobbing from just sheer joy. I’m at the track, I have to run after him, and 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, because he has been able to do Special Olympics swimming, track, bocce ball. He’s had all these different opportunities, and just the fellowship and the teamwork and the comradery. And again, their whole model, that really everybody is a winner. So that’s just been fantastic. And so it’s been great 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 run around the track—was because I thought back to what the doctor had said, “Mr. Page, Benjamin 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.”

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

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

David Hirsch: I don’t think they’re doing it out of malice or to be overly negative. Maybe they’re covering their tracks or they’re trying to create a realistic expectation. But to paint a vivid picture of the range of possible outcomes, many of which never come true.

So instead of imagining the worst or thinking it’s going to be as bad as it is, 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 is: don’t preworry your worries.

Brian Page: Oh, that’s good.

David Hirsch: It’s like you can’t control the future. You can’t change the past. So just be in the moment and focus, and God will determine what the outcome is.

Brian Page: Well, the thing that the neurosurgeon in Atlanta told us…and that’s where my dad helped me from a medical standpoint. So I would say, “Dad, 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. The bus driver. When people would make fun of kids riding the short bus, and I’m like, “We’re excited that he’s riding a bus, and how the bus driver painstakingly day after day would help Benjamin with his fine motor skills to fasten the seatbelt.” Because he’d get on, and then she’d get up, and she’d strap him in. And they mentioned she’d worked with him on that.

She helped them little things, like when he’d come home, one of us would be at home. And he’d get to the door after school, and walk up to the door, and he couldn’t pull the handle and push the button on the screen door at the same time, because it was two different things. And she worked with him on that. And so we celebrated when those things finally happened.

But to the point about what the neurosurgeon had said. At one point we took him back for a CAT scan, and Benjamin was walking down the hall. And Dr. Boydston is a great guy. And he just said, “Who’s that?” And Natalie said, “That’s Benjamin.” And he teared up, and he just said, “That’s Benjamin?” And she said, “Yeah.” And he said, “Mrs. Page, I’ve got to tell you, I never thought he would walk.”

And I told that to my dad afterwards. And my dad said, “Brian, Benjamin had the highest level bleed that you can have medically.” He said, “If you look at those CAT scans…” Which again, I’m no doctor. I stay at the Holiday Inn Express. My dad was showing me. He said, “Look at all that gray matter.” He said, “That affects your function and 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, 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 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 I said, “So, Dad, in some ways, Benjamin’s kind of a miracle.” And he said, “Well, as physicians, we don’t really use that terminology. But he’s doing what he’s not supposed to be doing.”

David Hirsch: Well, thank you.

So let’s talk a little bit about Shepherd’s College, located in Union Grove, Wisconsin. It’s a fully accredited three-year post-secondary program for students with intellectual 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’s strengths, and guided by Christian values.

How did you learn about Shepherd’s College?

Brian Page: Benjamin had an aide, a woman, 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 was this place called Shepherd’s College. And she asked if we knew about it.

And we decided that we would go and look into it. We 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. We just went up there 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 our oldest had gone on to college and had a great three and a half years—because he graduated early—we thought, “Man, it’d be fantastic if there was some kind of opportunity like that for Benjamin as well.” So that’s really how we got introduced, 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 he’s two years into a three year program, correct?

Brian Page: That’s exactly right.

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

Brian Page: I think what happened for me is once we heard about Shepherd’s, not knowing that Benjamin was going to go there, 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 someone thought of a place like this, that our kid, whether he went there or not, could potentially do.

So eventually we got to the place where we started going through the process. We thought, “This would be a great fit. He’d be able to experience college like his brother, live on campus, be away from home.” We were excited for him. He was excited about it. We were crying as we were experiencing the whole thing.

And then probably a year later, after he had already been there, one of their vice presidents approached me, because they were trying to fill some positions. Their leadership team was transitioning people, in a good way. They were retiring.

And so he approached me and asked just asked 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, he came back to me a couple more times. We got together. And then one day he just said, “Hey, we’re looking for a new vice president of advancement. Our current individual is going to be retiring in June. Would you possibly be interested in that?

David Hirsch: So from what I understand, Shepherd’s College has three program areas: horticulture, culinary arts, and technology. Is this the only post-secondary school of its type?

Brian Page: As far as we know. Others have 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 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 greater responsibilities, eventually following chores, and then learning how to do their own cooking and cleaning and laundry. It’s just been phenomenal just to watch them and see the growth for all the students.

One of the coolest things is they’re actually sent their admissions letter. Which you could appreciate as a dad, same thing that I’ve experienced with my oldest son and now with 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 “You have officially been admitted to Shepherd’s College,” is just unbelievable just to watch.

David Hirsch: And what a milestone that really is. So what impact has Benjamin’s situation had on his siblings?

Brian Page: A really large impact. My oldest Harold is now married. He married a young lady that he met in Argentina on a missions trip. Where Benjamin really touched Harold’s life, obviously other than just the fact of being his brother, was when Harold all through high school did several different missions trips, being a part of a Christian high school.

So he went to Guatemala and Honduras in particular. After his Guatemala trip, he stayed at an orphanage. When he went to the orphanage, what he didn’t know is that these children, babies and toddlers, 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 an athlete. He’s playing basketball and soccer and running track. And he just said, “Dad, 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 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 just an incredible life changing experience for him. He did continue on with the sports, and that’s how he ended up meeting his wife, who is a young lady from Argentina, and she used to do volunteer work there. So that’s really how Benjamin really kind of touched his brother.

With my daughter, she and Benjamin grew up kind of side by side because of the developmental delays that he had. It caused them to almost be best buddies. But eventually the gap started widening, as she grew 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 a mom in some aspects, swooping in and kind of doing everything for him. But then she was applying for scholarships at the various colleges, because 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 compassion, and kind of what she wants to do in life. And part of it is studying English and going into law. And then really being able to kind of touch on a lot of those other areas, including special needs and developmental disabilities, knowing that because she has a heart in equity and thinking fairness and people being treated equally. So 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 him. “Benjamin, you go ahead and shoot for the stars. 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 restrict him to go ahead. 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.” Benjamin would not be at Shepherd’s College.

I mean, we could look at certain things and say, “Well, he’ll never be able to drive.” 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 the Dan Ryan and to downtown Chicago? Probably not. But could he learn by going to a racetrack? Could I take him out to a farm and then let him get behind the wheel and show them what it means to go ahead and start and stop and brake?

And maybe it’s not dealing with traffic lights. Maybe he learns how to drive, and he never really has a driver’s license. 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 break out on his face. Like, “Wow. I did that. I did that on my own.”

So I would tell any other parent, “Just don’t limit them.” Sometimes the limitations on our kids that have special needs are the ones we’ve placed there. And it’s sad to say. I’m like, “Oh, I don’t want to do that, because I wouldn’t want anybody to do that to me.”

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

Brian Page: Honestly, David, it was like 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 think as a dad, we all get times that we’re frustrated. There’s times with Benjamin I’ve been exasperated. I’m not 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, 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 part of my own personal desire in life is…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 not to sit there and think, “I figured it out, you figure it out.” That’s sad if we’re not willing to reach a hand down and say, “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’m not only grateful just to be a part of the podcast, but just what you’ve done, by really connecting so many people together and having a heart for this. 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, visually impaired—you can go on and on and on. We of course see a lot of that at Shepherd’s College. But every one of these kids should have an opportunity and know that they also were created in God’s image, and God also has a plan and a purpose for them.

And so I’m just thrilled by the fact that you have a heart to go ahead and say, “Hey, I want to do this and make it known out there to other people,” because in many ways the special needs world I think is like the minority of minorities. They can kind of be pushed off to the corner, ignored, not given the proper attention.

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, of course it was in college, “Dad, I’m studying, so I have to be focused.” And I’m like, “Well, Ben, it’s okay if you have a girlfriend.” The big thing is they want to do the same things, whether it’s driving and having a bank account and having a job. He’d love to be able to one day work at Universal Studios, and he loves movies.

And in my mind, I’m trying to figure out ways, and my wife and I are 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 him know 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 Shepherd’s College, where would they go?

Brian Page: Well, we have obviously a great website, so someone can look at shepherdscollege.edu. 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. They can see some of the housing, just various things that they learn, through 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 in some other states.

So as of now, we’ve kind of identified Texas as being an area, or Florida being an area, because we are getting students that are coming from all over the country. They can certainly reach out to me or any of our other staff, our recruiters. We’re excited and love talking to families, helping them to understand what the process really is, 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 has agreed to be a mentor father as part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

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. 

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

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