Navigating Life as we Know It

Navigating Life with Lliam

November 04, 2020 Envision Media Group Season 1 Episode 12
Navigating Life as we Know It
Navigating Life with Lliam
Chapters
Navigating Life as we Know It
Navigating Life with Lliam
Nov 04, 2020 Season 1 Episode 12
Envision Media Group

Part one of a special miniseries that will be aired on key dates, Navigating Life with Lliam is a walk through of the experiences and circumstances that have defined our own journey and eventually led to Navigating Life as we Know It!

Support the show (https://www.patreon.com/NLAWKI)

Show Notes Transcript

Part one of a special miniseries that will be aired on key dates, Navigating Life with Lliam is a walk through of the experiences and circumstances that have defined our own journey and eventually led to Navigating Life as we Know It!

Support the show (https://www.patreon.com/NLAWKI)

Unknown:

Welcome to navigating life as we know it. This is Alex usually producer. But today host of a special episode of our show the beginning of a miniseries we are calling navigating life with Liam, a series that will focus on key events that happened 32 years ago that are nicknamed our adventures in disability life, we felt like it was important to share these stories because of the overwhelming and somewhat crushing isolation that often comes with this journey that we all have to take. We want you to know that you're not alone. And we want to give you a glimpse of what it was like for our own family. Thank you for tuning in. And let's dive into the interview. Thank you for tuning in to navigating life as we know it. It is Alex producer here taking the job as hosts for our first of our navigating life with Liam sessions. This is kind of a background about our own journey, and specifically Steven Kerry's journey through the wonderful world of disability rights with Lena, is that a good way of describing it? It's a pretty good way.

Steve:

Disability Rights.

Unknown:

Well, everything. Yeah. Disability life. This is all a lie. I I like that much. So we're here to talk about the adventures and disability life of Stephen Carey and Liam and well, the whole family together. So first off, people of course know, if you listen to the podcast, you've heard all of us talking at some point or there, but I would like to get a bit of a background on both of you. Please tell me a bit about yourself. I know this is weird coming from your youngest child, but pretend that I am some mysterious person interviewing you in a studio that isn't built into your own home. Okay. Shall I go first? Or how about let's make it really simple. How did you guys meet?

Steve:

How did we meet? Okay. That was interesting. We both had been coming off of a previous practice marriage. And Carrie had been married for seven years. And I had been married for 10 years. And this is back in 1983. And we went to not we didn't know each other We met at a Catholic retreat for people who have either lost a spouse through death or divorce. And

Kerry Johnson:

I have the beginning experience.

Unknown:

I hate to interject here for a second, I need to know. How did you the guy who comes from the arch Lutheran line end up in a Catholic retreat?

Steve:

I was seeing a therapist at the time helping me deal with all this. And they just happen to have a brochure and said, oh, by the way, there's this thing tonight, you might want to go to it. They had heard many good things about the beginning experience. And I thought Not tonight it was coming up and he said, Well, it's sure it sounds good. And I didn't. I was not a hardened Lutheran I grew up Lutheran. But that was

Unknown:

I've heard stories about how your

Kerry Johnson:

green card carrying

Unknown:

you when the other kids at the Lutheran School used to make fun of the kids who went to the Catholic school and I was eight years old. Yes. Well, formative experiences being what they are.

Kerry Johnson:

I ended up there. From a total and complete hard court full court press. Irish Catholic guilt mother. Yes. She said, you will attend this event. I tried any number of ways to evade and get out of it. to no avail.

Unknown:

Didn't she crank some like prophecy on YouTube that?

Kerry Johnson:

She did? Not at that time? Oh, thank God. But she just said no, no, you will go there was a family function. This is what blew my mind. There was a family function that was going to be happening. We found out later on, I found out was that same weekend I was like, Well, there you go. I can't go and she's like, oh, now you are excused from the family events.

Unknown:

Now people might be wondering exactly what it takes to earn that kind of an excuse or from a family event. This is the only recorded chance of that ever happening. As far as I know. There is no pretense or there is no nothing. Nothing was the basis of Oh, you can get out of a family event. No,

Kerry Johnson:

no, that didn't happen. No, no, this was you know, I've heard of acts of God. And I didn't believe them. I do now

Unknown:

you never got out of a family event that Nana gave you special dispensation. It was orders. Okay. Your order.

Kerry Johnson:

I had exit orders. I had my mission. I was given my assignment. There was no backing out. So away I went.

Unknown:

Okay, so now we know how you both got to this location. continue on.

Steve:

Well, I walked in late, everybody else was there ready? Yeah. But I had to stop to bring beddings

Unknown:

that set forth the rules of time.

Steve:

You had to bring something with Okay, something to share. So I had to stop at a grocery store and pick up some doughnuts or something. I don't

Kerry Johnson:

know. He made brownies. Just saying.

Steve:

Okay, well, anyway, I walk in. And I look around and I could see at the time was figure I am 3031 years old, or 31 years old. Okay. The average age of the room was probably more around 55 to 60. Yeah, except, except for I noticed one cute curly haired young lady with dark brown here, sitting in the room, and I thought I haven't sat down yet. I haven't registered yet. I thought, huh. Okay. And then we also we shed a butterfly name tag that you had aware in my name tag was, I believe, yellow? No, it was green, green.

Kerry Johnson:

Okay, so observant people.

Steve:

It was green, and I look around, I see that. Oh, that cute little girl with the curly hair has a green name tag had to

Kerry Johnson:

that was your group.

Steve:

That was the group we're gonna meet him. Okay, all the greens

Kerry Johnson:

went over here,

Steve:

blah, blah, blah. Now I want to pull a little prophecy here. I have not usually been gifted with prophecy in my life. But when I saw her, I heard one thing in my mind, you're going to marry her. And the funny thing is, I told her later about that. And she said, I would have run out of the room. And I said, Well, I'm good. I'm glad it Oh, yes. But I, I somehow knew that I was there for this reason. And I'm meeting this person. And it made me very, very nervous because I was coming from a position of very low self esteem. At that point. I suddenly became the custodial father of three children. One of them was nine or 11 years old, nine years old. Holly Anglin. Yeah, nine and then three and four. And so it was doing a lot of stuff. And I felt that I had been dumped and I didn't feel very worthy. But I was sudden, there's this gorgeous female there and I thought, Okay, well, it could have been can I marry her? Well, I said I was smart enough to keep my mouth shut.

Kerry Johnson:

Thank you. Yes. Okay. Okay. What's your side of this? Oh, good thing. He didn't say anything. The door was locked. She couldn't get out. Oh, my God, Dan, heavily chaperone. Did I mentioned this was a Catholic function. Oh, there were chaperones. Matter of fact, we were chatting afterwards after this opening session. And we were told at one point, um, it's rather late. We should go to bed now. It's like, Oh, okay. 3020. My, my man,

Unknown:

we don't we don't speak of set numbers.

Kerry Johnson:

And, you know, really, my mother made me come to this. It's okay. But anyway, so we behaved ourselves. And by the end of this weekend, this, this group that I was in, knew more about my life and my divorce than anyone in my family. And it was a very wonderful, fabulous experience. And we already had a wonderful basis for a friendship. And I totally blew him out of the water because he, we met afterwards, as our little group met afterwards at a place. We thought we'd go to have brunch. And he asked me out, and I had to tell him, no. And he was the look on his face. He was devastated. He was crushed. He was like, I was like, Oh my god, I can't do this.

Unknown:

Oh, my God, I

Kerry Johnson:

felt so bad. But that's typically what happened was that the next weekend that was my father's 16th birthday party. People. I am one of 11 children. Irish Catholic family. A 16th birthday party is not a small thing. This was not just my siblings, this one's aunts and uncles and cousins and things and such and

Unknown:

as an example when my when we get together for like our annual Christmas party which won't be happening this year and forth. Thank you. 2020 Yeah, um, but we do, we have recently settled on renting out of VFW Hall and yes, pretty much fill a good sized chunk of the room with people, because we're all that close. And that's usually just your siblings and their children and children's children's, you know, with a couple of ancillary outsides coming in. This would be those people plus more showing up yet a house, right? Was it a house? Oh, yes. Yes, knowing them. It was at their house. It was

Kerry Johnson:

it was at a house. And I thought, do I want to do this to this man, for a first date? Probably, didn't you? And then I said, sink or swim man. I felt so bad. He was devastated. I said, this is why I can't go out on a date with you. It's my father's birthday celebration, if you would like to come with you may. And I thought if he burns, crash and burn, have at it, otherwise didn't pass

Steve:

the test.

Unknown:

And just just as an FYI, when introducing individuals to the family in the past, I describe it rather accurately, as I've been told, as you're stepping into a kiln, basically, because the heats is going to be cranked all the way to 500. Get ready, you're gonna get grilled. Oh, yes. Oh, yes. Everybody is going to take a pass at you while you're there? because why not? This new person's here? Oh, goody. Let's find out what makes them tick.

Kerry Johnson:

Or as some of my brothers would put it, what are your intentions? In regards to my sister?

Unknown:

Knowing the kind of teddy bears that we have in the family? I love the aspect that yes, I could see it being intimidating. But it's also it's very much a position of from

Kerry Johnson:

the inside. It's amusing. Yes, on the outside, they can be rather overbearing,

Unknown:

and somewhat terrifying. I mean, I can imagine Tim being a truly terrifying presence in the right circumstances.

Kerry Johnson:

He can he did proton? Yes.

Unknown:

So how was the birthday?

Steve:

It was really very heavily populated. I have one brother, a mother and father. It's kind of like Ozzie and Harriet. And what are the kids name?

Unknown:

Boy, oh, boy, I will tell you this. All right. Now the Christmas difference is shocking. It has always been shocking growing up,

Steve:

but okay. And it was very crowded. It was very loud. It was very boisterous. But I didn't see an awful lot of interactions. And I came from a small family. But I saw a lot of people very animated, expressing love just in their faces, by the way, they're talking to each other. And I found that very attractive. You know, at the at the beginning, I experienced the winning, we had to do if you didn't already check your your vulnerability at the door, you had to you had to basically or not check the vulnerability. If you didn't check your defensiveness at the door. They took it away from you because you became very vulnerable in order to share. And so I was at the point already, where I'm ready for something new here. And we'll just see what it is. And I didn't have any preconceived notions about it. But I found that they were very nice people. However, it was interesting that one individual one of her brothers came up to me put his face right into my face and said, when she says go, leave. And I'm thinking, well, we just got here just a few minutes ago and didn't seem appropriate. And he was I mean, he was very insistent. It turns out that she had been dating somebody who was kind of like, more like a stalker. And, and he was just trying to be defensive. And I asked her about it later on, and she got embarrassed. But I mean, that's it. The thing is that we have brothers and sisters from a large family that each have each other's backs. For the most part. It's not to say they didn't have issues with each other, but it really came down to it. They weren't going to stand together. And I found that very, it's wonderful.

Unknown:

I love it. So we could go on for a long time. I've heard tons of stories in the intervening and the other session

Kerry Johnson:

and that

Unknown:

that is a truly truly full of foibles and hilarity and and the occasional weirdness that apparently running away from a door at one point in time. I remember correctly from the stories that I've been told over the years. But yes, first kiss. I remember that. That was my favorite one. Um, anyway, looping around, of course, obviously, and quite clearly you guys get married. Tell me about what the pregnancy was like. When you guys found out about Liam and Nicholas

Steve:

was backup one thing and realize that she married me and three children. Yes, true. I married her with no children. Mm hmm. So when when we found out that she was actually suspecting and found out, it was twins. I gotta admit, I was excited. But at first the predominant emotion was fear. Because I've got three plus two is five. I come from one brother. This is starting to seem a little bit crowded, and I wasn't sure financially, we could handle it. But then I realized the interesting thing is my father, my mother's my mother's father, my paternal maternal grandparents. My grandfather is a twin, born at 95. And so that was kind of a cool thing. I don't know there was of the twins in the family. But right away, I thought, well, that that could be a factor. But it turns like every other pregnancy in your family was a twin.

Unknown:

Yeah, it wasn't there a case study on that at one point, the burrs,

Kerry Johnson:

I'm sure, I'm sure.

Unknown:

Point is twins are outwardly lousy on one set of family all the time. You're getting twins like crazy.

Steve:

Not all identical, but several identical, but fraternal twins, right. So yeah, and you know, things are progressing rather well, except that it turns out that one

Kerry Johnson:

okay. My interjection is this. He was he he had some concerns. Oh, hell, no man got pasty white. When I told him it was going to be too. Okay. freaked out. And was like shaking in a corner.

Steve:

You should add that the Irish it's like to embellish stories quite a bit.

Kerry Johnson:

pasty white.

Unknown:

Okay, and yet I find so much artists dinner words.

Kerry Johnson:

Pretty much our Penny and per pound baby.

Steve:

What some problems developed, though. Yeah, no. Yeah,

Kerry Johnson:

it was it was a typical pregnancy. Up until six months. Steve had a way event through his work. And I checked with my doctors and see if that would be appropriate to attend. And he said, yeah, it was very, very, very wordy man.

Unknown:

Your concern at this point already, right?

Kerry Johnson:

No, no, not till we got back. His big thing was the doctor kept saying that he had some concerns about a twin pregnancy and that that was a high risk thing. I didn't understand that. Coming from one of 11 I have I have very fertile sisters. You know, half the time. If you swap spit, you're pregnant that this is just how it works in our world. And so I didn't understand this high risk business

Unknown:

because also a few of them had twins too.

Kerry Johnson:

Not until after me.

Unknown:

Really? I thought Shawn didn't have twins.

Kerry Johnson:

No, Shawn did not have twins. All her boys had twins.

Unknown:

Oh, yes. All her boys had twins.

Kerry Johnson:

Yes. Yes. She had three sons. All three of them had twins. So yeah, she didn't cut

Unknown:

they did. So I'm not surprised. I actually didn't realize that none of them had twins before you. Right. Right. Even I'm learning things here.

Kerry Johnson:

Well, no, I did Gigi have hers. No, no, because even Gigi, my younger sister had twins after me. Josh but yeah. Okay. Yeah. So I was the first one in my family to have twins.

Unknown:

You started it?

Kerry Johnson:

I started it. Right. Right, right. Sure. Of course I would. And so we went to this event, it was really I did not exert I didn't do anything. You know, we rode in the car for two hours. It was a lovely conference resort, blah, blah. I slept, took naps, whatever. came home, and I didn't feel comfortable. I didn't feel correct. I just felt like I had the flow. I called my mom. She was a nurse and said, You know, I'm just not feeling right. And this that and the other thing. She's like, Oh, my God, would you just go to the hospital just right now stop, just go to the hospital. I did. At which point they told me that I was in labor. There was nothing they could do to stop the labor. They couldn't stop it. And I was giving birth to my twins at six months. 24 weeks.

Unknown:

And there they were. Now, when you found out about that, What went through your head?

Steve:

What was there when it was all happening? I'm the one who drove to the hospital. But I'm panic. Well, first of all, we didn't know you're going to be in labor. We're just going to the hospital to check this out. Right. So why don't we get there and we hear that it's like, oh my god, there must be some mistake. I had no idea what the complications could be or would be. I didn't know. I guess they figured if he's going into pregnancy, everything into labor is that everything would be okay. I mean, I was really a novice. I was a dad three times, but there never was any complication. So I just thought that's pretty dumb, basically. So I, I didn't know. But then we, we began to hear they they medivac them out in a helicopter to children's Memorial Hospital within several hours after the birth, and the doctors did not look very confident, they look very concerned. And that begins to freak you out. Because all you're doing is you're looking for facial expressions. There weren't any smiles. There weren't any encouraging words. And they said that there's a he's really sick.

Unknown:

And we can hear Liam in the background right now he has woken up and it's decided that he is probably going to go raid the refrigerator, which is a favorite pastime of our lovely

Kerry Johnson:

Lord Liam. Lord Liam.

Steve:

Yes, they were, they were born at little over two pounds, two pounds and a few ounces

Kerry Johnson:

each, which was pretty good for six months.

Unknown:

So moving through this part, I want to talk to you about some Before we go further into the different problems that we face right away. I would like you to tell me, did you feel like you were getting clear information during this? Not at all? So you didn't feel like you had any decent communication?

Kerry Johnson:

Oh, heck no. And then we were we were separated. He was not in the delivery room. I was in this room by myself with all these people I did not know. And this this was happening and I did not want it to happen. I wanted it to stop I wanted this to and so no, not very clear information at all.

Unknown:

You had no one there with you

Kerry Johnson:

know, Nobody. Nobody on my team. My mom, my mom did come to the hospital. But she wasn't allowed in there. She was with which did she did you see my mom? No, you didn't see my mom.

Unknown:

I can't recall. I don't blame it. There is a level of PTSD that probably exists with this particular incident. So

Steve:

like your my brain had just been put into wearing blender. Yeah, I didn't know what was going. I didn't know what to think I didn't know what to do. I was powerless, totally powerless to stop or alter the events were just sliding down the hill. And I couldn't change it. I couldn't steer it. I couldn't do anything about it. Exactly. Exactly.

Unknown:

I'm very, very certain that that is a feeling that others have definitely felt along with you. I'm I didn't know that you were completely alone for all that. Yeah, that's really definitely

Kerry Johnson:

my first pregnancy, no idea what to expect no understanding of what was going on with me or my body, or how this was affecting either baby. Because basically, Nicholas Liam was first born Nicholas was second. Nicholas ended up going through two labor's because he went through Liam's and then his own. And then there was a 20 minute delay between A and B, which was some concern. Again, I didn't know about this until much later. And then comparing stories with other people who've had twins. Usually they're like one or two minutes apart, not 20. That's that. To me. That was all what

Steve:

saw our medical education began after that. Because you begin to hear all kinds of stuff and in, you hear it and you don't really perceive what you're hearing, because of the stress factor. And sometimes the doctors that tell us two or three times at least maybe two or three times because I'm just in a daze. They're shell shocked. Just Yeah, no, I yeah, it's I knew nothing was good about this. We didn't know how bad it could be.

Unknown:

So we're gonna take a really quick break here. And we're gonna get back and get into the how bad it actually was portion of this interview. So we'll be right back. Thank you for tuning in to navigating life as we know it. This is Alex, your producer, and for this episode, your host coming at you live with your macbreak announcements. First off, thank you to everyone who has helped us to get where we are today are people who have offered us beta listening, the folks who have let us interview them. Everybody, you have been phenomenally helpful, and most importantly, our listeners. Every time we have engaged with you it has helped us make our show better. So if you have any suggestions, comments or would like to hear about a certain topic, reach out to us on Facebook right away and let us know what you think and we will be certain to respond to you. We'd also like to announce that as requested someone reached out and wanting to know more about the way social security works when it comes to benefits with SSDI. We have gotten a hold of people with social security and we will be bringing you a two episode breakdown of that, that we hope will be a enjoyable experience for everybody and wildly informative that will be coming as part of our second season. But we want you to know, it is on its way. On the production staff side, we would like to also congratulate our hosts, Steve, for being named the recipient of the 2020 David D. Smith Humanitarian Award issued by the American Institute of Architects of Grand Rapids. So congratulations, Steve. And if anyone hasn't heard his phenomenal acceptance interview, head to our Facebook page, we do have it posted there. Well, I'm not going to get in your way much longer. So we'll let you get back to your listening experience. Thank you so much for tuning in the navigating life as you know it, please feel free to join us on Facebook. Or even if you feel like supporting us, go to our Patreon. We've got a couple of different levels you can help us out with. And we'd be more than happy for your support. Have a wonderful listening experience. And I'll let you get back to the rest of the show. Okay, so we are coming back. And we are going to dig into how bad it actually was. So they were airlifted to children Memorial.

Kerry Johnson:

Liam was intubated. And they only the hospital that we delivered at they only had one. And so Nicholas had to be manually intubated. So somebody actually had to be with him the whole time and squeeze the ball in order to or the the whatever bag to make him have air in his lungs. Okay. So, already, we're second disadvantage. For Nikki. Yeah, they go and so that their children's Memorial Hospital now, I delivered in a South suburb of Chicago, so that's very far away. I have children's in North Side of Chicago. Yep. So I have delivered to babies. I have nothing to show for that. I have no babies in my arms. I did not really get to see them. Other than briefly right after birth, and off they went. So I don't even know what they look like. Steve, did you go? Did you go to children's then? No, no, no. Just went home.

Unknown:

Rushing you out. Check you on what you rushed

Kerry Johnson:

it and then the next day you got me because they would not let me leave. right then. They didn't? No, no, no, I had to at least stay overnight. So you went home and I think you napped?

Steve:

I probably well, I don't recall. Yeah.

Unknown:

Never ever said you probably crashed crashed. Yeah,

Steve:

you don't really anxiety. So how you don't sleep

Kerry Johnson:

to get me from hospital a directly to children Memorial Hospital because I was sure as hell wasn't going anywhere else. It's about

Steve:

an hour and a half drive with traffic

Unknown:

don't care. Now a question to throw in here is, as you've mentioned, you had three other children? Yes. Um, at this time, those three kids were with your mom, grandma. Right. Right. Yeah. And so that had to be a fun thing to set up. Because I know you mentioned to me a long time ago that you had to tell her kind of what was happening, and you didn't really know how to deal with that. What was that experience like for you? Well,

Steve:

again, it's kind of hard to remember I can conjecture what my experience was, I'm, I'm sure that I was kind of a wreck. And you know, my mother is your grandmother, you realize that she was a very empathic person. And if you were not smiling, she was in pain. Yeah, I don't I she saw the severity of the situation. And she was very concerned. I was not able to other than inform her to be able to give her any comfort because I didn't

Unknown:

have any yourself.

Steve:

yet. Yeah, I didn't write. We had no story. We didn't have any of the whole story. We had nothing really at that point. We had no idea what to expect. So she takes care of them. I don't believe we had said to him at that time, because we're talking about, you know, five and six and 11 at that point, I think they were so I mean, they knew that the babies were born they knew there was some problems and that's the extent of it. And and we drove up there and began to get our formal education okay.

Unknown:

You What was it like kind of explaining, you know, talking with your mother Nana, already being medically minded and stuff and from my memories for at least a rather formidable force of nature in her own right.

Kerry Johnson:

Indeed, um, you know, it's it's, I it a lot of it is again very much a blur i was i was segregated and not like, I did the birthing, and then I was left and the babies went to the hospital. And I just basically was waiting for Steve to come and get me out of this place because they wouldn't let me drive on my own. So that we could go and find out what the heck was going on. I didn't even really have any for sure answers or anything at this point. So it wasn't until we actually got to children's hospital that we learned anything for me to then be able to talk to my mom. Again, my mom is a nurse. And so I could talk to her about you know, those this, you could

Unknown:

give her jargon, she got the jargon, and we could talk

Kerry Johnson:

about it. And sometimes I would have to say to her, I need you to talk to me as my mom, because I could see that she was a nurse mode. I don't want nurse mode. I want my mom, because I need to understand this with what I'm feeling. And she she could she could go in between these two personas if you will. Because she could be nurse, nurse Nora nurse in charge and you know, my mama, my mom take care of everything. But you know, and then I would say, but my mother's heart is saying this and my mother's heart says, and she could hear me then. So I would have to tell her to switch hats. I need my mom now. I don't need my nurse. I need my mom. And how do I do this? And how do I get through this and data. But a lot of it was just a matter of I knew that I just needed to be at the hospital where the babies were so that I could find out everything that was going on. And I could manage that. Okay, that was my goal.

Unknown:

So we get a children's hospital. This is about how long after the birth?

Kerry Johnson:

I was the next day. So 24 hours

Steve:

2436? Well, I think it was the next morning. I don't think it was 24

Unknown:

hours. So even less than that. So quite 12 to 24 hours. We're still within the first full day. We are now an hour and a half across the entire city of Chicago. And we are still have no clue what's actually going on outside of right, a few fractured jargon filled statements you probably received along the way. Right. Okay. So you get to child children Memorial. Tell me about that.

Kerry Johnson:

So we had to go to the neonatal unit, which is a particular floor and protocol for preemies that have a lot of issues going on, which I didn't know. So we had to scrub up and gown up in order to even walk in the room where my babies were. And one was and they were in these, they call them Ohio beds. And basically what that is, is that looks like a oversized shoe box with a clear plastic lid. And maybe it's 18 inches by 18 inches. These these these babies that are the size of my hand, from my wrist to my fingertip, I took a picture because nobody would believe me have my hand next to him is in this and there's wires and there's tubes and there's things and there's monitors and baby a and baby and it was very overwhelming. very overwhelming. The nursing staff there was superb. They were phenomenal. They are angels on earth, Indeed, indeed. answered all of my questions. They were very supportive of us, encouraging us, allowing us to do as much touching as we were able, at the beginning it was a little bit less but then it was a matter of you know, we could put our hands in at least at least touch their hands and feet.

Unknown:

But we could not pick them up.

Kerry Johnson:

No, no holding no holding these babies that had to be difficult. Very extremely Irish touchy feely family. No touching

Unknown:

no feeling immer being three and having someone say do you want to hold a baby? I mean,

Kerry Johnson:

yeah, yeah, you know, this is this is just what we do we hug we touch we kiss we all have it now. And you know Steve and I were also very much proponents of that that's a big part of our life is touching each other and holding hands and you know, this is this is how I express myself and not being able to was very disconcerting and

Steve:

on top of being powerless Yeah. And and clueless as to what the options are. What what direction This is heading, you can't even comfort your child. Yeah. So that was that was a Wow, it was very disempowering, very overwhelming, overwhelming. Really hard to understand what was going on and why it was happening.

Unknown:

I want to drill down on that for a second with you specifically. Um, I know that with masculinity with the the man's role on a lot of stuff, you've given the talk about the protector, the person who's supposed to be there who's supposed to bring stability, understand things like that, that.

Steve:

What would that do for you in that time when you didn't have any answers? And were being dragged around? You didn't have that power? I do want to say, I think that's a role that people assume they think in today's jargon, I wouldn't say that it's the man's job to do. There's a psychological there is a psychological maybe evolutionary thing about that. We feel like we're supposed to kill the meat and drag it home and cook it on the fire and make sure that the family is okay. We are the protectors, right? Yeah, right. Well, protector and provider, okay. And it works just as well, the opposite way. So,

Unknown:

for example, there's a biological imperative aspect, it's it's built in to be defensive of your children, to want to be there for them, we all have it. And then to add on top of that, the societal constructs that we have, tell me about your experience with that period of time. I know it's hard, because like I said, there's a PTSD aspect there. But

Steve:

I've never had someone kidnapped in my family. And I've actually can't think of anybody I know that did. But that's a situation of feeling totally powerless, because the fate is in the hands of other individuals. And I felt like our babies had been kidnapped. Because we couldn't do anything other than ask questions, sometimes dumb questions to three times and doctors and nurses were very patient with us, because they would answer the question the same question again. And again, because I think there's not their first rodeo with parents that are, you know, over their heads. But to not be able to affect change and protect your child is probably the hardest thing I've ever had experience. Because there was there was nothing I wouldn't have done. I remember asking what point because lidless his problem was his lungs were immature, he could not actually generate his blood. And so they had him on a high level of oxygen. And, and pressure,

Kerry Johnson:

pressure ventilator to keep his lungs open,

Steve:

right. And it would sometimes cause damage, they blow a pneumothorax or whatever they call the net to put another tube in his chest because the lungs are collapsing. And it kept getting worse and worse as we go along. As the weeks went along, but there was I remember asking the doctor to dumb questions. I mean, in retrospect, but they were very gracious. I said, Could I axogen his blood? Can you hook it up to me? Could it circulate through me first and go to him? I thought it was a great idea.

Unknown:

But no, we can't do that. I said, Can you take part of my lung and transplanted? No, we can't do that. Okay. Those are the only two things I thought that I could do with my body to be able to offer something for him to live. Which being as I am your child, and I've known you for, you know, 30 years give you a one, two, I also am not even surprised by that approach. Because it's very much you've always been the kind of person that you know, when worst comes to worse. Your first response is what what do I need to do? Whatever it is, tell me if I will help someone if it will protect someone if it will be there. Let's go ahead. Yeah. So

Steve:

and so that's, that's kind of what happened. And I mean, not in the first day in the hospital, obviously. But as the week's and as the days went by. We started getting phone calls and middle of the night. And they were generally along the lines of come down here right now. We don't think he'll make it through to the morning. And so he would be driving at three o'clock in the morning and call my mom, you know, take care of the kids. We'd be driving down there and expecting to get there and say that he's passing away in every time by the time we got there. They said, Well, he started rallying again, and we're happy and we would stay there for most of the day. And actually, what's amazing about this, he was in the hospital for 30 days before he passed away. We were there every day. And I continued to work and I don't know why. Probably the dumbest thing ever did but it probably kept my mind off of something for a while. But I don't think I could have been too effective. But We still drove it was a three hour round trip just about and especially if you're in kind of traffic because you know, Chicago, it's like New York or Los Angeles. And it could be five miles, but it could be an hour, you know. So we were driving back and forth. And at least a dozen times, we got that call in the middle of the night. We don't think he's going to make it. Because you know, this is oxygen levels and heartbeat, and it would go up and it will go down. It'll get very scary. It'll go back up. He was fighting to stay alive. We believe because we were fighting for him to stay alive. And from some kind of a spiritual sense. I do believe that you can communicate at that level. And he would not give up because we would not give up.

Unknown:

Well, we'll dig more into that with her next episode. But we've talked a bit about Nicholas right now we know that he had the lungs weren't were immature and not develop what was going on with him.

Kerry Johnson:

Mr. Liam, Misha, Liam extubated himself on the helicopter ride from hospital a to hospital B newborn child out of out of his throat. What that means is he had this tube going down his throat into his lungs to keep his lungs open. He ripped it out as a two pound. Baby.

Unknown:

This sets the theme for the last 32 years of his life, by the way. Yes, you're ripping it out. Yeah. Still, he is one of the most ornery individuals I have in my life ever met. And I've worked in sales, and you're so proud of me. Yes, I'm proud of every time someone calls me or reach out to me and says you are right. He really is nefarious. And I'm like, you have no idea. So he estimated himself on the helicopter helicopter he excavated recently born two pounds, just done with this tube. Yeah,

Steve:

get it out. Leo didn't have a lung issue whatsoever. And he was the firstborn of the two. And that's probably why he didn't have the lung issue. But he did have an issue inside of his head. He started having intracranial bleeds, which caused hydrocephalus which basically means that there's hydrocephalus as water in the brain. But basically, he had blood in his head because parts of his brain had ruptured. And we found out later had basically died. And so they had to put a shunt in his head to draw that fluid out, so that his head would not get very, very large. And, and all the bones are not connected yet. So that wasn't a huge issue at first. But now we see he's got tubes out of his coming out of his head, too. And that is not easy sight to see.

Kerry Johnson:

No, no, no, no, no, no, no. And then he developed a, my gosh, it's a it's a three yard long word. And I can't remember exactly. nacra blah, blah, blah, blah, blah. It was he had a perforation in the bile and parts of his intestines were dying. And so that was an emergency get here. He He may not make it. We have to do surgery right now. Give us your verbal off and try to make up before he's dead. They don't say quite that way. But that's basically what it was. And so he then had a external

Unknown:

like, ileostomy

Kerry Johnson:

Yeah, he had le ostomy, which was a bag on the outside that would collect the excrement because it couldn't handle it inside, then it wasn't reconnected. But that was going to be supposedly going to be just a short term thing. And once he got a little healthier infection dissolved and resolved itself, then they would reattach everything, and potentially, he could be fine. We don't know for sure. It could happen. Blah, blah. So he's on oxygen. They can't wean him off it because every time they try to take them off the oxygen has SATs dropped like a rock, so they got to keep them on it. He is constantly activating himself. He has these weird infections that they can't figure out and then they finally see bubbles. He did everything such a weird way. At one point, they wanted to do spinal tap. And I said okay, and we have to authorize all of this. We have to sign these papers. Okay.

Steve:

May I hear that every time you went into a life or death surgery? I had to sign the paperwork. Yes, she and he had say, Well, what happens a bit on the surgery he will die. What are his chances? Not really good. Okay, sign here. That's really hard to do.

Kerry Johnson:

Yeah, a lot of dancing with the devil.

Unknown:

There's a psychological grind at that. And then you're not just dealing with it on one front, you have Nicholas and the lung issues and the oxygen issues. You have Liam, and you have the vowel issues, the brain issues, the oxygen issues, you're literally fighting two battles against attrition. It's grinding on your everything. Right? It was hard, right? So that's that. That's, yeah, I can not even begin to imagine and I have been through a good chunk of some nasty stuff with Liam throughout my life. But that's, that's.

Kerry Johnson:

So I had a saving grace and that Nana could translate for me, that is nice to have, you know, so they were but we had this one. Children's Hospital is a teaching hospital and we had this one nurse, one doctor that would come into the neonatal unit, and he would come in, and he would stand in front of lamb and fold his hands and bow his head and say, he's very sick. Every single time he came in, he would do that. Like, I am unaware. I felt like grabbing a bias lapels and rattling him

Unknown:

I'm almost surprised you didn't type it in.

Steve:

I think what he was trying to say is, there's a high likelihood your child's gonna die get prepared for he's trying to

Kerry Johnson:

prepare us

Steve:

for Paris. But it was really annoying to hear that because like, no, Shakespeare is really sick. Wow, I just thought that was on TV. Really? Is

Kerry Johnson:

that why he's that funny color?

Unknown:

Oh, yeah, there was the colors thing too. Yeah. Yeah, yeah. Yeah, that's that that because there's the visual image like you said, there's tubes. There's there's I mean, coming monitors heartbeats respiration rate coming from a siblings perspective, I remember one of Liam's more dramatic shunt malfunctions. Let's say that that was an exciting experience. Really fun fact, at age five, I could identify all the critical symptoms of a shot malfunction. Why? Because you have a very narrow window of time for which to get to a hospital from the onset of shunt malfunction to brain crushed against skull, right. And so everyone in the family got to have a crash course in what to look for when someone is having a shunt malfunction, right. I remember the best one we have. And we'll bring this up more with our next session. That's going to actually be airing on December 2. But we there was a saving grace that came a little bit later in the form of a couple of doctors, one in particular, that was particularly understanding and helpful. Dr. Delgado. Yeah.

Steve:

So forget that man.

Kerry Johnson:

Amazing.

Unknown:

So we'll dig into a lot more that because we just want to mostly cover where we are up to here. And this episode going up on November 3, I believe. We are recording it just before October 30, which is Liam and Nicholas's birthday, right. So we're kind of trying to keep these as as as temporally relevant.

Steve:

And I think another reason we chose this time of the year to do this is because every fall it's almost like clockwork, and it's something that we can't control that. Yeah, might be seasonal affective disorder. days are getting shorter. We also realize we're living through the time that we had the most stress that I've ever experienced in my life. Yeah. And it lasted for I mean, the last until today, but it's ever ended really heavy duty stuff lasted for at least three months until Liam came home from the hospital. Yeah. And we'll talk about later, but then he had to go back to the hospital shortly after that. But I mean, there was it was an unbelievable amount of stress that I'm sure that anybody listening to this has their own story. And this isn't a contest of who has the greatest story because every one of them are unique, every one of them are, are filled with stress in filled with sorrow and grief in triumph. It's just it's a it's a mixture of emotions that we don't normally talk about. But we feel that it's important for us and for other parents that have gone through this type of trauma to be able to share it. Because what you find out when you do is that we're not strange. This is very, very common.

Unknown:

And something for me, as you know your son and as someone who has been heavily involved in Liam's life for my entire life. I wasn't that I didn't get to have I mean, I don't my first clearest well defined memories are going to Kansas to help get his service dog when I was like six. So before that I have some disjointed memories but nothing solid incoherent. So I wasn't there for a lot of this. I don't remember most of it I and also for me a lot of its routine. Like there was a period of time when Liam was in the hospital a lot. Oh, yeah. Liam's in the hospital again, he might die. It's, it got to the point where and I have some people who have been genuinely concerned because they'll ask about stuff and I'll go Oh, yeah, well, when I get phone calls certain time I go, oh, gosh, is it Liam, you know, but they expect me to be like, you know, heartburn, just like you know, oh, yeah. Well, I've secretly expected a phone call from my entire life. It's something that perpetually have a bit of bracing for

Kerry Johnson:

right and ready.

Unknown:

Yeah, at the ready for he's in the hospital. something's going wrong. Something is going bad over here. But there's also something I've learned along the way and that you maybe got an image of in those first few days is that there are a few people on this planet as tenaciously dedicated to somehow staying alive, despite every odd being set against them as Liam. quite true.

Kerry Johnson:

I didn't know when I chose the name Liam. That was my choice. That the definition of it I found out later was determined one, duh. Now,

Unknown:

as to the name thing, I like to end a rather serious episode on a bit of a light point. Liam is spelled a little differently than in our world, traditional spelling. We may know of, you know, famous actors with the name Liam. Liam Neeson. You know, they're there. They

Kerry Johnson:

prefer to to describe it as a Swedish spelling of an Irish name. In other

Unknown:

words, Dad misspelled the name, because he didn't understand what you were telling him.

Steve:

Lloyd is spelled with two L's. That's all I gotta say. And I thought that Liam was spelled with two L's because the last part of William wi Ll I am. Okay. It's short for William. So when I put it down as l l am, I wanted to correct it. And she says know what his letter said. because she'd have a story for the rest of

Kerry Johnson:

her life. Yes, I do.

Steve:

But Liam cannot find a coffee mug with his name on it true. He is for nobody else has a name.

Kerry Johnson:

On the positive side. Yeah, he doesn't drink coffee. That's true.

Unknown:

Here's another interesting thing. This predates the whole. Let's give our kids a name with a weird spelling trend that happened like what? 12 years later, you guys set that trend? You were like, We did it first. You get the weird name. Liam has

Kerry Johnson:

no Nana did way before I started. Nana Aaron?

Unknown:

Yes. Okay. I will admit my my grandmother had a gift for finding the uniqueness and a name, especially the way yours is spelled.

Kerry Johnson:

You know, I got the male spelling of the name Carrie and Maine of my existence until I finally got a clue and said, Oh, thanks, mom.

Steve:

Well, Cary Grant was spelled ca are you? i? So

Kerry Johnson:

yeah, that's the same. Question. Yeah. So

Unknown:

when, like, you mentioned, you know, you mentioned baby, a baby, what point? Did you have the names ready beforehand? Or do you pick the name?

Kerry Johnson:

Well, not totally. Okay. We're still debating because I was out. I was three my three months to continue this battle. I wasn't ready. We weren't done with the battle. We and I didn't know if I having boys or girls. So we were still debating all manner of names. And another thing, okay, I have older siblings, and they were taken all the Irish names, there was not a lot left, the Pickens. Okay. It's getting slim. There's

Unknown:

a tradition in the family with many, many children, we try our very, very best to not repeat names. Because if you don't want to do the whole, you know, Jason, and then 12 people turn around, that's too much work. give everyone a different name, like open the thesaurus. If you have to find a word, you know, just name it.

Kerry Johnson:

Exactly. And so we were quickly running out of Irish names. And I ran across Liam and I thought, Oh, that is such a pretty name. It's just nice. And it worked well with Johnson. Liam Johnson. Nice, wonderful, but then we had to attach another one with it. And so it was like, you know, do we go with the same first letters and I wasn't a big fan of that. And, you know, so we were still going. You dad really wanted Martin and Luther, especially since they were born on the 31 should be Martin Luther King. Sunday.

Unknown:

I go back to my earlier shock that he went to a Catholic events. I'm like, and note, I say this with all the love do her but didn't grandma always have a little bit of an issue that you'd married an Irish Catholic?

Steve:

My mother? Yes. Your grandmother. Howard wasn't? Yeah, put a positive spin on it. I'd gotten to know. Florence Howard, her name was Nana, pretty well, because we had several hours together one day in which I came over to the house and she was checking me out. I was checking. He was interviewed, I was interviewed, and I was interviewing,

Unknown:

okay. And he likes to add the second part to make it seem like he had control there.

Steve:

Well, I came to drop something off. And I stayed for several hours, and she poured several pots of coffee. And we talked, they had apparently she was reasonably impressed. Because when we told the my in laws that we were engaged, she was completely delighted. And she said, Oh, I was so afraid to tell you that I liked him. Because you would probably do the opposite and drop them. So she had a wait till I proposed first and then then she said she was thrilled. I was her favorite son in law.

Kerry Johnson:

He was Stevie.

Steve:

And actually Nana was a very ecumenical person. And so as I at that point, so I didn't see any differences yet, really. But

Unknown:

yeah, just a little bit. She had just a little bit.

Steve:

No, my mother. Yeah. Oh, yeah. Your mother was after the first he said, Oh, my God, what are you going to do? Raise the kids Catholic? And I said, we don't have any kids yet. What do you I didn't quite understand it. But it's not like that. She was a

Unknown:

My grandmother was a very sweet person. And it never was something she would have held against it. But it was something she would mention as a polite amount of grace.

Steve:

The world she grew up in was very different. The extra marriage would have been a Protestant in a Catholic. Yeah. But that's not my worldview in other Oh, your mother didn't think that? Well, my mother did. But, but I gotta get back to the name. So Liam has had some interesting nicknames from that people have called them double L. Of course, you have claimed the third Lord Liam, which is right out because he usually has control over the rest of us. Staff. Our staff Yes, we are staying user

Unknown:

for his pleasure part of the absolute juggernaut of willpower that is Liam is his high imperiousness he holds court I have I have seen people hold court but none as effectively and he does it non verbally no one can wield influence because I have seen him pull off some flexes that are impressive

Kerry Johnson:

with a total lack of ego zero he will he no ego involved in that has no issue but he

Unknown:

knows how to declare that he has absolute control in an area and he can make everyone stop and respond to him if he'd so wills it and He'll do it just to prove he can and then he'll be done he'll leave is like I have proven my point. I'm going back to my room now you all can return to your meeting with me is an incredible thing and people never believe me when they don't know it and then they experience it and they're like oh my gosh and I'm like this is what I grew up with. And I'm certain we will have episodes that go into that I know I already want to

Steve:

drag out episode about you because I could see that as a child growing up.

Unknown:

I am strong willed number limit I am I I am not saying Ebro thing I'll say one last thing middle names. I know some of the story there I know we have it was Nicholas Cunard and Liam grant Liam got the Liam got as you described it to me one time, the weird first name and then the normal middle name. And you said Nicholas got the opposite?

Steve:

Yes, Nicholas, then good.

Kerry Johnson:

Yes. And gouner does from

Steve:

that's a Swedish name as my my father's middle name knows Gooner

Kerry Johnson:

Johnson. And grant is my middle name. Okay.

Steve:

But I guess my parents one time where they got the name grant. And apparently one of them had a friend named grant. They just liked the sound of the name of his little special honorarium that goes along with it, Grant. Okay, so Ulysses S, you know, okay.

Unknown:

I see the grandiosity doesn't. from nowhere in this but

Steve:

sure he is a drunken inept president

Unknown:

And get a great general but we can talk about that in a different pot. Give me going about history, I can tell you stories. But thank you guys for sitting down on this lovely October evening after a nice dinner. And we will do this again in probably about, you know, a month time and

Steve:

what will the next one cover?

Unknown:

The next one is going to cover the month of November. Okay. Okay and it will be taking place on December 2. And we will discuss that a bit further to on December 2. So, we will bring that particular date and everything up to that date up at that point in time. Sounds good. So thank you so much for tuning in. Thank you. We're not going to have a chat cafe cuz the chat Cafe is right here. So we're just going to let you guys go. Hope you had a wonderful listening experience and thank you for tuning in to navigate here. Hello, Abigail here, granddaughter and niece. We have a pretty soon a dark lord, also known as my uncle Alex. We have a two hosts, mama and papa. But you might know them by Steve and Carrie, my grandparents. Now we had the woman behind the web services. My mother Holly. Lastly, we had a lovely intern vanilla navigating life as we know it is produced by envision Media Group LLC