Navigating Life as we Know It

Navigating Life with Lliam Part 2

December 02, 2020 Envision Media Group Season 1 Episode 14
Navigating Life as we Know It
Navigating Life with Lliam Part 2
Chapters
Navigating Life as we Know It
Navigating Life with Lliam Part 2
Dec 02, 2020 Season 1 Episode 14
Envision Media Group

***WARNING***
The topics in this episode might not be suitable for everyone. This episode covers the period of time during which one of the twins passes. This is an intense and very raw subject that is addressed directly. Please use your best judgement.


Join Steve, Kerry, and Alex as they discuss the events that brought their family into the disability community and eventually led to this very podcast. 

No matter how your journey with disability began, we all have a story, and we all share certain traumas. We are sharing our story to help others know they're not alone. Our goal is to fight the isolation that seems to soak into the very bones of the disability community. 

How can our loved ones ever find a community if we cannot build bridges with each other?

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

Show Notes Transcript

***WARNING***
The topics in this episode might not be suitable for everyone. This episode covers the period of time during which one of the twins passes. This is an intense and very raw subject that is addressed directly. Please use your best judgement.


Join Steve, Kerry, and Alex as they discuss the events that brought their family into the disability community and eventually led to this very podcast. 

No matter how your journey with disability began, we all have a story, and we all share certain traumas. We are sharing our story to help others know they're not alone. Our goal is to fight the isolation that seems to soak into the very bones of the disability community. 

How can our loved ones ever find a community if we cannot build bridges with each other?

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

Unknown:

Hey folks, welcome to navigating life as we know it. This is Alex usually producer, but once again hopping into the host chair to lead the episode of navigating life with Liam. This is part two, where we're going to be starting in November of 1988. And rolling on through to February of 1989. Now, this particular episode needs to come with a disclaimer, we are talking about a time of extreme trauma for us. This is when Nicholas passed and when many very serious operations went on. So if that's something you have a hard time with, then this might not be the episode to listen to, we felt it was important to share it because everyone goes through traumas like this. And it's important to remember that we're not alone. So without any further ado, I will take us right back to navigating life with Liam, I am interviewing Steve and carry your usual hosts. Additionally, there will not be a chat cafe in this episode, because it doesn't really fit in very well. Let's dive back in. Okay, so have you guys been excited for Episode Two of navigating life with Liam cautiously? I wouldn't say excited. This one is not a it's not a happy topic. And people usually end up looking at you terrified when you say, start talking about this part of our history. Yeah, true. I know that, uh, that was something a lot of times when I was younger, when people would ask like, oh, what happened? Well, you're gonna think this is dark. But this is just me. I'm used to it. So let's roll into it now. Yeah. Well, I don't know if you recall this. But we read a store when you were ready. I know. Yeah. Yeah. And go ahead and tell the story. You might as well. Yeah. Colorado and. And it was an older couple that was running it and your mom and I were looking at something and we had Liam there. And I don't know what they ask you. But you said my brother had died. And they got this look of horror on their face. And I don't know what precipitated that conversation. You were only like two so you probably don't remember it. Yeah, people aren't used it. two year olds talking about mortality, just like this off. It's not casual. It's not common. Not when you would bring the subject and you would bring the subject up. It was just like, Oh, geez, you know, dude, we don't have to let everybody know. It's okay. What can I say I wanted to advocate when I was a child to true or tell stories, either one. They're both my hobbies. Right? Well, so we've been our last episode, we were talking about where we came from, with the pregnancy leading up to just a few days after their birth. Now we're going to be talking about the month of December starting with Let's start with the tomorrow. We are recording this on the 29th of November, we did have to do some exciting jury rigging here. We've got a socially distance recording session, because I am still recovering from COVID. So if there's any weirdness, it's because we are stitching together two tracks recorded in two different locations for the first time ever. So this is going to be exciting. Let's dive in. Okay, so I'm going to start off with a really hardball question here and I am sorry, but when he got the call when you found out what how did that go down? Okay. Well, it was 32 years ago today that Nicholas passed away. And we didn't, so much as get the call as we were there when it happened. We got the call to come in. And I don't remember it was early in the morning. I can't be cough. I don't Yeah, blur is because we made so many trips to children's hospital late in the morning, early in the afternoon. Usually it was late at night. We get the call because I can't stay on the phone ringing at night. And we were supposed to go to my parents for Thanksgiving. Well, we had gone to your sister Patrice his house for Thanksgiving that year. We're going to lounge because my murder, yes, because mom wrote a prayer. Okay. But we got the call the evening of the 29th. And we kind of figured it was probably the end of this. I don't know what they called fairly often at this point. Come in sign but give us a verbal because he may not make it. It's very grave. It's very serious. And we was weird. PTSD kind of situation where it had happened so many times now. That Yeah, so we just called, usually called Steve's mom, because she had more flexibility. My mom was working at the time. So Steve's mom would come over to manage Holly Eric and Becky, get them off to school, whatever. And if it was in the night, she just come over and just sleep at our house, on the couch, fully dressed, because that's grandma. Yeah. And just be there in the morning. So we would call her and then jump in the car and leave. And how far was how far was the hospital? What was that? from the south side suburbs of all the way up to the north side of Chicago in terms of miles? I don't know. But it probably took about an hour and a half to get there. Well, maybe not traveling in the middle of the night. Yeah, well, you know, I was gonna say about 45 minutes. So 45 minutes in Chicago, traffic is better in the wee hours. But it's still there, which totally freaked me out. It's like, three o'clock in the morning, what the hell, you might not want to know. I don't know. And anyway, anyway, so we go to the hospital, we gone up, we scrub up. We have to be we have to be wearing gowns and everything to go into the neonatal unit. And Nicholas's failing badly. And we did all the things that we did. And prior to this, my sister Patrice told me that one of the reasons that Nicholas was struggling so hard was for us, and that we needed to tell him that it would be okay to let go, and that we would be okay. On those were the hardest words that I had to say. I can't even imagine. Well, it did. It was almost surreal. But yeah, we had to say it out loud. The nurses again, we're just above and beyond phenomenal. That was the only time I was able to actually hold Nicholas in my arms. was as he took his last breath. And they, they both the twins were intentionally paralyzed all this time they had given medication so they wouldn't move because they don't want with the wires and the hoses and stuff. And they didn't want anything to sturb. So they were they were Mr. newborn, remove his text, yeah, actually baited himself well, they were intentionally immobilized. And so we could not. We could never pick him up. And so it's near the end, what they did is they with the hoses and everything else still on it, they put Nicolas into your mother's arms. And she said in a rocking chair. And it's like one of those things on TV or watching the chart, you know, the TV screen, and you can see the heartbeat and the respiration. You're not even really watching it, but you're very aware of it. It's almost like I really felt at that point that I was watching this outside of my body. Like it was surreal. This was going on, I couldn't believe it. It's like I'm in the middle of a bad play. And I'm cast it as a part that I do not want to play. But I could see it slowing down and slowing down and slowing down till finally it flatlined. And there wasn't any alarms that go off, it just quietly flatlined. And that was hard. I mean, the hard part of it was obviously here, here's my wife, and the mother of this child, and the mother of all my kids, and in she's brokenhearted, but quietly sitting there rocking him. I'm mourning. I don't know how many different things at the same time. And it was really, really difficult to be there because I would have signed my soul away to the devil. I would have made a deal at that point. I would have done anything. But I was totally I guess the word is emasculated. There's nothing I could do. I'm supposed to be the protector and the father and the, you know, provider, the provider and all that and I could do nothing. And it was just being taken away in front of me. Totally powerless. And that is probably the horriblest hour or whatever it took, I don't know, it could have taken several hours, it could have taken 15 minutes I'm, there's no way it could track time as to how that happened. But watching her heartbreak in in watching Liam pass. And then Nicolas Nicolas I'm sorry. And then later in that day having to go home and tell the kids that he had passed away until my mother had passed away. And I feel like I was the bearer of horrible news. In in my pain, I'm also carrying the pain of the message I'm delivering to other people. And I don't want to do that again. It was, it was bad. I can't imagine. Like I said, it's it's utterly unimaginable. And then, of course, you didn't exactly have the luxury of being able to break down because there was Liam, there were the other kids there was life continued on well, and there was no great pausing they did. After he had passed away, your mom and I went into a separate room. And they brought Nicholas in with all the wires taken off, so that he was just like a natural baby. And we got the whole room at that point. And they were so again, so wonderful, and so gracious to us. And most of the nurses were as broken up about this as we were, and we were all crying and their tears everywhere. And they were just, they were just very wonderful and said, you know, let's bring, let's let us clean, lick Nicolas up, and then we'll bring him into you. And they did. And they said, stay as long as you want. Stay as long as you want in here with him. It's just you guys, we were in a room by ourselves, just us and him. And it was just a fabulous, fabulous opportunity to walk walk in that grief water. Because you're going to have to, you're gonna have to walk into it sooner or later. So, and they just gave us such wonderful, beautiful spaces to do that in. I didn't know how wonderful they were at the time, but they were just phenomenal. And so then we left the hospital. And I remember we stopped at a shop on the way home because I I knew we were going to be burying him and I had to have a I wanted a christening gown to bury him in. And we went into this shop and I found this beautiful christening gown. And the sales lady was just like, Oh, this is just gorgeous. This is so beautiful. This is going to be such an air alone. Your your baby's gonna pass it down to their baby. And, and the whole time I'm thinking in my head. No, pretty much not this is gonna get buried with him. Yeah, we didn't want to I didn't tell her that. Because she again, Oh, my Oh, but you know, I was thinking, wow, wow, this is hard. This is a lot harder than I thought it was gonna be. You know, I have to mention something of this point that when I was I had to be, oh, early 20s. I had the occasion to speak with an older gentleman who was in his probably mid to late 70s. And his name was Bill. And he was telling me at that time about his son, Albert, Albert was hit by a car when he was riding his bicycle, when he was like 12 to 14 years old. So we're talking about something to happen probably in the 1930s. And as he was talking to me, he started breaking up and crying. And at that time, I was thinking, Oh, come on. 30 years have passed. You know, certainly you can get a talk. Yeah, like get over, which is course you never do. But certainly I couldn't understand the effect on him. And I'm having a hard time holding it together now 32 years later. So I certainly as you get older, you gained a little bit of understanding and wisdom about human emotion and how it affects you long term. Oh, and also there is as we've discussed a little bit in our last one. There the aspects of this is your child. I mean, we've got millions of years of humans behind it saying that you protecting this is important and losing is bad, right? Right. But it's not just a child that you lose. It's it's all of that The thoughts and the ideas and the potential and the dreams. And all this other stuff was also lost at the same time. It was also Liam's other half his twin brother that he's never going to know he's, he's gone. And ah, there's so many thing of internal debate about how much he knows about that. Cuz, yeah, yeah. Well, I mean, but you know, I'm thinking he didn't get to know him as a as a, you know, appear. And there was that loss, you know, that he wouldn't know him as appear and he wouldn't know. You know, here I am five and here he is five. And what are we doing now? And what are we doing now? And, you know, all of that gone, gone, gone, all of it gone. Learning how to drive gone. I would like to do a session sometime or an episode on the stupid hurtful things people say when they're trying to be kind and considerate. And it's hard to believe this. But we actually did have people say things like, well, if he had lived, he would have been severely disabled. So good thing he died. Why they didn't say good thing. He died. But the implication was that well, it was a merciful thing that he died, in what I what, but that's what I that's what I want to blurt out is then I guess we should kill all the disabled people. Right. I mean, it was not even a thought that crossed my mind that well, at least he died. Because he was disabled. I mean, it's, I don't understand that. And then the other one was, well, at least you have the one. Which is like, Yeah, you got you got one in a spare. So but you know that what's interesting? What's interesting about that, at least you have the one. Um, you know, we were joyful. At the time, that we knew we were having twins, we were scared to death when we found out about the pregnancy that that I mean, the early delivery. And then we are again, the emotions whipping back and forth. And again, were were devastated by the loss of one. And then Liam was not out of the woods because he had several, many, many I cannot how many surgeries he had in which they said that he needs us it's an emergency surgery, we had to give a verbal authorization even after Nicholas had passed away over the phone as a Russian down to the hospital for an emergency surgery to save his life over and over and over and over again. And every time is having critical surgeries when I was when I have memory. So yeah, and a lot of those were orthopedic but there was also neurological surgery. So yeah, you know, I in preparation for this, I was thinking about how in life, you go through different inflection points, you know, that's the day in which you realize when something happens that nothing in your life will ever be the same again, if you had any plans, forget it. They're all being reformulated, recalculated, like the old GPS used to say, you know, recalculation recalculation, if you remember those. But it's, it's like everything you had expected and worked for is now off the table. Everything that's going forward is unknown. And you can have an inflection point, in a good way. Just think of somebody winning the lottery, or you fall in love or you get married. Those are inflection points that are happy, or the death of a loved one, the death of a parent the death of a child the death of there's a lot of different inflection points in which you know that your life will be so very different. And we were having a bing bing bing, bing bing, one after the other. It's like, it was like being nuked. Because you couldn't even know what path you were on. And then you had another inflection point coming along. So it Yeah, it does create trauma and PTSD, I'm sure because there's times in which I swear to God, if I hear a phone ringing in the middle of the night, you never get good news. Even most bad news, they'll wait till the morning, but if you get it ringing at three o'clock in the morning, I just go into a panic attack. Because I've been trained to do that now. And I don't know any other react. How could you? Unless someone says I'm going to call you three o'clock in the morning? Okay, no, this call is coming in. But when it rings, without knowing it, it's Oh my god, nothing could nothing good comes of this. But oh, yeah, it's true. It's, it's difficult. And you alluded earlier about that. You think that, that, that Liam does have some knowledge of his brother, and we can't say that he doesn't because there were times when he would just start laughing for no apparent reason. And we would always say that Nicholas was telling him jokes. It was really I mean, it was like he was getting a punch line and we're sitting there Looking at him and he just breaking down laughing and so is he? I don't know. Maybe he sees things we don't. But not twins are weird. There is the story of of the song. Yeah, no, no. So after I know this one. Yeah, you go ahead. I have a hard time with this one. You start off, okay. When Nicholas passed away, we did have a memorial service for him at the at Sacred Heart. Holy Sepulchre cemetery, and where they, they donated everything for us, because it was a child. And we were trying to figure out what that's where my grandparents are. And he was able to be buried by my grandparents, we we are picking out some music to play and one of the songs that had was an oldie by then my 1988 by Dan Fogelberg is longer than you and I can't read sight all the words, but longer than there's been oceans and longer than, you know, the stars in the sky. I will be in love with you. And so we decided to play that in the background. Because it was a song that had meaning to both of us, and it seemed very appropriate for this occasion. And so we did play that. And, and it was, I don't remember much about the service. I really don't people showed up, they. They said, I just heard like, like, you know, Charlie Brown's Mother of 1.5. Fine, fine, fine, fine, fine. It just, it didn't register because we're in total shock. But you're just hearing the Charlie Brown voice, right? Yeah. I mean, the cadence thing, one thing, you know, one of our friends, a Lutheran pastor Don, boiling down boiling, officiated at this in, he just walked up, and he smiled, and gave me a hug and said nothing. And that was the best. I remember that. I don't remember anything anybody else said, except that he was just there. Okay. So well, I remember. The casket was open at that at the very beginning. And that was for me, because I had some things that I wanted to put in with Nicolas. And my family tradition is a garment that's made for the babies that are baptized. And typically, the godmother creates this garment. And it has the child's name and the date they were baptized. Well, of course, the twins were baptized, the minute they were born, well, five minutes after they were born before they left the hospital. They were baptized. Thank you for once, Marie. And my mom made this garment. Well, that's something that typically the I would keep on. That's mine, as the mother and so I, I wanted that back. So while he had that on him, for the whatever, for the short period of time, I wanted it back. So I took that, but Scott, Uncle Scott gave him teddy bear to take with him. And there was just a couple of other things that were in with him. And, but that was more for me, I wanted that I need that. I wanted to make sure that he was okay, before we close that. Will Patrice came to the doorway saw that it was open and froze. And Patrice is one of my older sisters who had had a stillborn. And she was like, I can't go in there. I can't go in there. And I was standing by the doorway and I just said that's okay, Pat. You don't have to go in here. This is for me. This is not for you. Okay, that's fine. Don't do this. I'm fine with that. This is for me. And then we we closed it and we finished up and and it was fine. It was no big deal. I did not I did not harbor any guilt or hard feelings to her. It was not about making people do things they were uncomfortable with it. She was uncomfortable because her stillborn baby she never saw she never saw her baby. She didn't look at her baby. She She didn't want to do that at that time because it was too hard. And so this brought a lot of things back to her cuz I had the same PTSD that we have. Exactly. Exactly. So one of the things that nobody should ever have to bury a child. Right, right. Something something that I like to clarify whenever. Whenever I'm discussing this with someone who asks me or if we get a discussion, it's important to say that one of the I personally view it as a good thing but some of you would as a kind of a more of a thing is family wise Especially on the Howard side, we have a rather from what I found unique relationship with death and the grieving process. I don't find many people that have the same approach to it, which is very much. The funeral is for the living. It's for people to come and mourn. It's the person who's gone is gone. You're there to say goodbye. It's about you. It's about what you're able to handle. Right? I've noticed some people look at that. And they think it's kind of freaky. At the same time when we've had services where you have the large power contingent, and that is another contingent there. They look at us as if we're some weird heathen mob, because we like to also tell stories, we connect, we cry, we are allowed, we bond in all things. And we play music. And that's, it's an Irish music. We play sometimes very strange music because it makes us happy at that moment. And you know what, that's what it's about. And it's the music that this person loved. So we're playing it. Getting back to the music in it, the music end of the story, so we played longer than in some other songs to add a geek. Keep in mind this song was not being played on the radio. It was an oldie, for sure. Never. When we visited the ice, the NICU, the neonatal intensive care unit. Was there ever music at the hospital? There was a radio right above the voice. I never heard of playing music. I was there more often. I was there every day. I know you were there every day. But I was there all day. You You came and got me and we spent time and then we went home? Because you were still working? Yeah. Well, I don't recall there being a radio there. And I don't recall music. But when we came back, they had moved Liam to another place because just to for our sake they had moved his isolette to right, they they don't have your walk back to the same place. You're right in the missing spot. And then like so we do this, which is for several that's a shocking amount of compassion and foresight. Yeah, well, again, compassion that was really they are they are phenomenal at this. And they they just, you know, because at first I was just like, oh my god, why'd you move Liam, they're like, this is what we do. Everything is fine. He's doing well, you know, cuz I'm freaking out. No, no, it's okay. So they hit him at a different location. And it was several days went by we had visited a different location and then we came back and he was back at the original location where Nicholas was right next to him. And we're Nicholas would have been was empty. And the radio was right above where his bed was. And when we walked in the song longer than was playing Yep. Now I take that is a supernatural thing, because the odds I don't know how to calculate that have a oldie being played. At the same time that we walk into that NICU. To me that was Nicholas's echoing back to us his sentiment, he was replying to us. It was in the same location where he passed away. Now I again, I I cannot see that as being anything that would come under the banner of coincidence. To me, that was a spiritual coincidence. And it was his way of saying, I'm okay. I love you too. Yeah. So what went Oh, geez. From there. It never stopped for Liam. It was. We had I know. It was a it was a Nick was a death of the ball. The perforation of the ball? Yeah, he blew up like a bowling ball his his belly. They couldn't determine why they didn't know why we just see this kid looks like he's just about to burst because they can't figure out why we're seeing you know that. You know, the stave puff on the Ghostbusters. Yeah, you look up puffed up. He was. That's what Liam looked like, his skin was shiny. It was so tight and taut. He was he was running a fever. He was you know, they're like there's an infection, but we can't find it. He's not responding. We don't know what this is. And he's not doing things that he should be doing. And FYI, none of the things that Liam has ever developed, did he ever do it according to the textbooks, right? Ever. Yeah, that makes sense. Liam doesn't like to, you know, go along with things like expectations or plans, right. So finally, they saw air bubbles and more like a perforation. Let's go. So they had again another emergency surgery number 73 or something I don't know when we're sitting there and I tell you one thing I did learn when you're sitting in the waiting room for the surgery that might take four or five, six hours, whatever it took, I don't know. You you learn you become very attentive of the doctors are walking out after the surgery because you're not getting a play by play. And so when you see your doctor walk out, there is so much that you focus on the face to see if this you're reading it Langworthy even saying the gear body language how they're walking, whether there's any look in their eye or whatever. And it just it's it's really intense in you know, so they come out and they mentioned it was a perforated bowel and they had to remove some of the intestine and resected they didn't have to I guess he was had a ileostomy for a while but they could reef they conduct then they reattached. Yeah. And so he's, he's normal in that regard. When his shot was malfunctioning right, then, yeah, we said they had to keep doing different shots on different sides of his head. And because you can't put it back right in the hole where it was you got to move it and it's like, oh, my God, he's got these holes all in his head is a kid will never be have his head shaved because there's too many scars there. We just like the fact that he has lots of hair. But he's had his head shaved when he's had to have shots. We nicknamed fuzzy. Yeah. And then he they couldn't wean them off the oxygen. He just, he would be you know, very low, minimal, minimal, minimal, they take it away. And his he would be sad immediately said it, put them back on the oxygen. And it was like, Oh my gosh, but never anywhere near the levels that Nicolas may have been. You know, but it was like, we should be able to take this away. But it's practically nothing there. But for some reason he liked it. Yeah, we had to keep that one in and it's like, oh, my gosh. So So yeah, I mean, it was back and forth, and back and forth. And then even after we brought him home, which was in January, was a three, four days later, one week, seven weeks, seven days later, he is back in with with spinal meningitis, which is like, Oh my god, that he had his little baby in a room and isolation and people walking there and hazmat suits and everything. It was just it was some of its gross, I want to talk about the drainage plugs in it. It was just it was too much. very overwhelming. It was too much. So you know, we were traumatized. I think it started obviously in October and ran through October, November, December, January, February, March, and then things just settled down to chaos, you know. But it went from critical to chaos and chaos looks pretty good after you've been through the rest of it. It's like, okay, some breather here. We brought him home. They didn't have any monitors on him. And he was in our bedroom, right at the foot of the bed. And we kept waking up to see us moving as he breathing because we're scared to death. I mean, we saw these wires and tubes and stuff and all these machines and things that were so necessary before and now he's laying there. He was bigger, but he still was tiny. And it's like, can't you give us a monitor is something that go with it just for our sake, you know. But yeah, insurance doesn't pay for that. No, no, but it. So yeah, that that was our story of, you know, the end of Nicholas's life and the beginning of Liam's which did not start out what we ever imagined in our textbook fantasy idea of you know, how it should be coming home and having the Blue Room with all those little baby boy stuff. And yeah, so jumping back in. When did we come home? The first time he came home in January, and then he had to go back and he was home for seven days. He was back in the hospital for 14 days, and then back home again. Then we started the physical therapy pretty much right away. And that went on forever. I still does sometimes. Yeah, yeah. Yep. Yep. Because of his cerebral palsy, his muscles. He has spasticity and so it affects them. And if you don't use it, you lose it. And I don't know this was mentioned before, but the assefa light, no Hydra. hydrocephalus. Okay, he's hydrocephalic which is water on the brain because when he was born, he had bleeds into cranial bleeds, grade four on the right side and grade three on the left side 5.54 and five, okay. I don't know how far you can go. But I think that's pretty much to the highest level this scale, which what happens is the brain fluid and the blood that resulted from basically a massive stroke at birth, could not drain as it normally would through someone's spinal column because of the damage. And so that's where they have to put a shunt in, which is of course a tube that runs through the skull, under the brain, from the, from the brain, under the skin down into the abdomen, in his case where it would be absorbed by the body through the abdominal cavity. And so he has cerebral palsy, from birth and then hydrocephalus from birth. It would be several years later that we get the diagnosis of autism because two wasn't enough. And then, well, you know, Liam, he likes to collect things, right? Yeah. I mean, he added on what was it in? 2014. He had epilepsy. Oh, is that earlier? No, I think that's about right. Yeah, yeah. I think I was 14 at the time. That was that was a nightmare for a different day. We'll talk about that one. But well, that's a that's a different nightmare for the moment. Yeah. So we don't comes home for seven days. Then he goes back in what did he come home again? After 14 days. Okay. So I think we're gonna Jamie and then we're into February now. February. Yeah. Okay. Yeah. So February, Liam finally gets to come home. And that's where we are paranoid. Because, once again, he had a very serious illness with with spinal meningitis. And when he came home again, we're still faced with the idea. There's no monitors. It's I mean, that the crisis that happened we never thought about spinal meningitis, we're thinking about apnea. We're thinking about stopping breathing in the middle of the night. And then we get hit with the spinal meningitis instead. Now I forgot how that manifested itself was a high fever or something. Right. It was very high fever. And he was having pressure. Because he was doing some sundowning, which is where the eyes, he can't look up. He would. He couldn't look up to his eyebrows. Yeah, yeah, I know. I know that one from a shunt malfunction preparedness training. Yes, yes. So you know, we, we went back to the hospital because he was sundowning and had a fever. And that's when they admitted him. So it was just, you know, then. So then it was back home. And then talking to the neurologists and everything. They just, they were like, you know, what, what, what can we expect? What, what is this? What is this life going to look like? What is this gonna be like? And they were just like, get we don't know. I'll tell you why they didn't say and I, as I've visited with other families and parents over the years, and heard some of the horrible prognosis that doctors would say, well, he'll probably never walk, he'll probably never talk. He'll never be able to do this. She'll never be able to do that. It seems like there's so many stories of physician saying what your child will not be able to do. And we had some amazing doctors at the Children's Hospital. Oh, yeah. in ICU. And one of them in particular doctor, Oh, God, Japanese American. And when we ask him these questions, next thing we're gonna get into was talking about Dr. Delgado, so the first thing he says, We don't know, he might walk with a limp. He might not be able to walk, he might be able to he might have, he could be a genius. He could have some mental delays, we don't know. He gave us the ability to hope and to have higher expectations. Which is, is the best way to start out. Of course, then when you don't change any of those expectations. You go through this trauma of loss again, over a period of years, because this didn't happen. That didn't happen. That didn't happen. But there's also tribes during those age those times to where there was things he was able to do. So it's just a mixed bag. But But we were not taught we're not they didn't approach it from a standpoint of deficit. It was a matter of, there's a lot of potential. We don't know what the potential is going to be. And I think that was a blessing. We had doctors who understood the bedside manner, how to talk to parents, what was going on emotionally with us, they really knew that. And I tell you what's amazing the emotional response we got from the respiratory therapist and the doctors and all of them and the staff there. Because they realized that we had been there every single day, visiting with Nicholas and for Liam. And they had said, there are many times a baby comes in, they're born from a mother who is addicted to crack cocaine, or some other horrible background. And they never see the mother. They never come to visit, until the day they're discharged. And meanwhile, these nurses get very, very close to the people they're treating. And they see these babies and they would just fall in love with them, and then the crack mother would come in to pick them up in that was really, really hard for them. So when they saw us there, and I'm not saying we're the only ones that were loving parents, but the contrast of what they had to work with, they saw us there, they saw our honesty, they were very visible with the pain because we didn't know how to hide that anyway. Naturally, they were crying. We had respiratory therapists that were in tears when they walked by us when Liam was when Nicholas was passing away and when Liam was going through crisis. So it was it was really, it was amazing the support we got from the people there. And I To this day, I've just, I can't remember all the names, but I just remember that they were wonderful people. And who knows one of them might listen to this. And remember, it could be could be Yeah, never know. You never know, right? Well, we've made her way almost all the way through to February. We've talked about some pretty tough stuff in this episode. I think that we're going to end the punishment for now. And we'll pick this up again, I think episode three will probably do early February. Sounds good. That sounds good to you. Sure. All right. Well, folks, we'd like to thank you for listening to our story. Next week, we'll be getting back to our regularly scheduled programs and reviews and whatnot. But if you have any questions, or honestly, if anyone ever wants to share their experiences, just with the community that understands, that's what we have our Facebook page, our Facebook group and our community there. Thank you all for tuning in. And we'll roll the credits now. Thank you. Thank you for tuning into navigating life as we know it. I'm Alex and usually I'm the producer working behind the scenes. The hosts of the show are Steven Carrie Johnson, though today they got to play the part of the guests. I'd like to thank Holly for being our design and web support guru on the show. And Daniela Munoz. For all her work as our research and communications intern, she makes my job a whole lot easier on the backside. We'd like to invite you as always to join our conversation on Facebook and if you'd like to support the show, please look up our Patreon and consider sustaining donation. Even $1 a month can go a long way. Navigating life as we know it is a production of envision Media Group, LLC.