#104 Rob Flanagan: Straddling Acceptance and Hope

NICK FIRCHAU: Here’s a scenario that I think everyone can identify with. You’re sitting there on your phone or your laptop and you’re killing time - maybe you’re supposed to be working or picking up the house or doing something more important - but instead you’re scrolling on social media. And it doesn’t really matter where you’re looking, it could be Twitter or Instagram, Facebook, whatever, and as you’re sort of aimlessly staring at that screen something comes across your feed that is intended to stop you in your tracks. It’s not an ad, it’s not someone’s vacation photos from spring break, it’s one of those posts where someone you’ve met in your life is in crisis. 

And it feels like it always works this way for me, it’s someone I met years ago, maybe from a previous job or college, or some guy I played co-ed adult soccer with, someone who I know, but I don’t really know. And in most cases they’ve posted something very personal, very vulnerable, something bad has happened in their life, and they’re asking for help - sometimes it’s financial support through a GoFundMe page, sometimes it’s just moral support - a kind word or encouragement when they’ve lost a job or maybe a parent has died.

You’ve seen these posts, I’m sure of it. And there’s always this moment when you have to ask yourself, am I close enough to this person to get involved, or do I just keep scrolling? 

This episode of Paternal is about one of those people who asked for help. Rob Flanagan is a husband and father who lives with his family outside of Boulder, Colorado, and roughly one year ago he and his wife Dana began an ordeal with their daughter Saoirse that changed their lives. But I never really knew what they were experiencing, because I kind of only watched it from afar. I think we all have people like Rob and Dana in our lives, they are friends of friends, I’d met them at a birthday party or two, I could recognize their faces at a playground, Rob remembers some joke I told once, but we’re not regular figures in eachother’s lives.

But on March 21, 2023 Rob and Dana very much became a part of our lives, when we heard the news that their daughter Saoirse, who was closing in on the final months of kindergarten, had been suddenly hospitalized and then intubated, and it was unclear if she would ever wake up. 

My wife and I donated money to their GoFundMe, we asked our mutual friends for updates, we freaked out at the idea of parents just like us experiencing a life-changing medical trauma with their kid, and we read and re-read their posts on social media, beginning with one on March 30, nine days after Saoirse was rushed to the hospital.

“We are in an unthinkable place with our sweet baby girl,” the couple wrote at the time. “Our girl was dancing in her bedroom last Monday, March 20th, doing her favorite Cosmic Kids Yoga and making art as she was getting over a cold. On Tuesday morning, out of the blue, she was having seizures for the first time in her life. Nothing has been the same, and our hearts are broken open.”

Here’s Rob Flanagan, on Paternal.

ROB FLANAGAN: What happened was she had this slight fever, and the school she was going to, understandably after COVID, was pretty locked down. And so we were holding her out of school. We were going on probably day four, day three. And I think any parent where you have both parents working, it's that debate between the parents, like, who's going to miss work?

Like, well, my meeting is more important than your meeting, and it's stressful, right? And you're trying to figure that out. And so what happened is she'd been out of school for a couple of days and she'd been really tired, but nothing that you remotely would have thought was something outside of a cold.

And I woke up on Tuesday morning and I went in and she had fallen out of the bed. She was actually on the floor and I thought she was just sleeping deep, uh, tumbled out of bed. You know, I really did not think anything of it. And when I picked her up, I remember she was really rigid. And I was like, Oh, she's in this really deep sleep.

And what I remember so distinctly is I went and got the thermometer and I took her temperature and it was 100. I was like, Oh crap, man, what meetings do I have today? What meetings does my wife have? And you're kind of going through this life down that kind of avenue. 

And I go into the kitchen and I get the cough syrup and I go back in the room to give her the cough syrup. And as I'm trying to give her the cough syrup, that's when I notice something's wrong. She's chewing on her tongue, kind of just doing like a mouth movement and her head is tilted to the left. And I'm like, Oh, is she playing a joke? Like, this doesn't seem right. And so I immediately picked her up. Now I started recognizing something's not right.

And I carry her into our bedroom where my wife is, wake up my wife. And immediately my wife identifies that she's having a seizure and we call 911 and it sounds a little esoteric, but it was like this rubicon. It was like this dividing point in my life where at one point, five minutes earlier, I'm just trying to navigate how do I manage being a professional, my wife being a professional and having a kid to, oh my gosh, this is like a whole other world. And we got her into a hospital nearby. They gave her some meds and, and for a little bit there, they were like, we're gonna let you guys go. We're like, oh, okay. This is uh, not ideal, but they're gonna let us go.

And then the meds they put her on weren't stopping the seizures. And so then it took an even other turn, to where they needed to get us down to Children's in Denver. And that's what really started the journey.

NICK FIRCHAU: Now, you can probably guess from what Rob said there that prior to the morning of March 21, Saoirse had no history of any seizure disorders. Think about all the times your kid has been sick with a cold or a fever and he felt just the way you did, like it was an inconvenience but it was temporary and largely inconsequential. 

He certainly never expected for his daughter to be rushed to a Children's Hospital just outside of Denver or to spend the night there with his wife on a futon in the ICU, with no extra clothes, no food, no toothbrush, and no idea what was happening inside their daughter’s body. 

Now, Rob and Dana were lucky, in a sense, that the children’s hospital where Saorise was admitted is one of the leaders in the nation when it comes to seizure care, and maybe because of that knowledge, or maybe because of the shock or exhaustion from the situation, Rob assumed the doctors could solve the problem relatively quickly, and that his family would be back at home in a few days, maybe a week or two at the most. 

I think that’s how most people would approach this kind of situation, that this was something they could overcome, and maybe life could even go back to where it was before all of this began.

ROB FLANAGAN: You know, they're, they're trying some different medicines and you're, you're there really with no knowledge of where this is going to go. You're of course, hoping and really assuming this is going to be a thing, but we're going to get through this in a week or two.

I mean, that's what's in your head. You're kind of just existing in another reality. And we woke up the next morning and the doctors are coming in and it's like, she's having a lot of seizures. And it's almost like you're reading the energy of the doctors and the nurses like, Oh wait, like something's not okay.

And they come in and they have this meeting and they say, Hey, she's having so many seizures, we’ve got to put her on a specific type of seizure medication that even that we don't know will work. But what we do know is that when she goes on that, it's so strong that she won't be able to breathe. So we have to intubate her.

And I just remember this so distinctly. They're putting the tube down her throat and you know, she gets knocked out by the meds. And I remember just realizing. Oh, I didn't get to tell her that I loved her and that her Baba was still here with her. And I, and I just had this feeling of like, oh my gosh, I pray that I will have that opportunity that she comes back.

And that was like another step. And so you're kind of going down these stairs and each stair you're going into fear, darkness, and the unknown. And you're just hoping that the stairs are going to stop, but each day they keep just going down.

NICK FIRCHAU: I want to read another part of this post here, the one that people saw on Facebook on March 30th. So this was nine days after all this began. And this is the one I saw after we'd heard what had happened. “We are in the ICU at Children's Hospital, Colorado Anschutz, where doctors from the critical care team, neurology and infectious disease have been trying to figure out the cause or causes of these seizures and how to get them to stop.

During this period, one week and counting, Saoirse has been heavily sedated on medications and intubated to help with her breathing. We miss her terribly.” So during this period, while she was intubated, you guys are in the hospital and you're there with her, but there is no interaction with her at all, like you guys couldn't communicate with her after all this had happened.

ROB FLANAGAN: Yeah, she's, you know, I don't know the medical term and I'm probably wrong in the phrases. It's not a coma, but like she's in a deep, deep sleep. So a machine is breathing for her. She's eating through a tube and they're just throwing all these really hard seizure medications at her. But the seizures are still not stopping.

Those are the stairs you're going down because you're like, Hey, did that one work? Uh, no. We're still seeing them. We're going to up this. And then they get to the point on that one, the first medicine where they're like, Hey, we're at the cap of that medicine. Uh, the seizures are still going, we're going to start ketamine.

And I'm like, Oh, ketamine, Oh, dear God. And now they're going up on that one. And each day you're just sitting there kind of just hoping that something's going to help stop these. And as they're going through that, they're trying to figure out all the different type of things. And then this was really the day, it was a couple of days after we got in and that's when they came in and they said, this is looking like something called Norse fires, which I'd never heard of before.

And, uh, and I'll, I may get a little emotional here. Um, but they, they took us into a different room and you're like, Oh, this is probably, this is our deepest fear. And it sounds so cliched, but time stopped and you're almost kind of, or I can, I can just speak for myself. I'm almost out of my body. Not in a crazy sort of way, but there's this part of me that's observing me about to get news that's going to change my life.

And we go in there and they explain Norse Fires, and I kind of had read a little bit about it. And that's when they tell us that it's a very challenging form of epilepsy. There is a possibility of being in the hospital for months and months and months. That she may need lifelong care. And that there's a chance that she may even become brain dead.

And that we would need to make a choice at some point. I know my wife had kind of moved somewhere else and I was back in the room with just Saoirse and that's when I was really starting to feel like, Oh man, I didn't tell her, you know, that I loved her and the sounds kind of out there, but I just had this moment where As I'm kind of petting her hair and I would always sing her the song.

Um, a lot of dads saying, uh, uh, Baba is going to buy you a mockingbird. And if that mockingbird doesn't sing, I'm just singing that song to her. And I just get this feeling inside that like, no matter what happens, I will always be her Baba. And it was just this sense of acceptance of what is presenting itself in this moment that I, I could resist it, but part of this journey was about accepting it.

It wasn't about figuring out why it happened or why us or what we could have done differently. It was really like, this is what is, and how do I just kind of lean into as much as one can this feeling of acceptance? Part of this was to find the seesaw of acceptance of what is, but not be attached. And at the same time, hold in my mind, the possibility of health and healing.

NICK FIRCHAU: So you mentioned that after hearing the news about Saoirse's diagnosis and what might happen or what the rest of her life or the rest of your life might look like, um, that your wife, Dana went into another room or you took some time apart from one another. What were you guys saying to each other at this point? 

ROB FLANAGAN: So it's, it's very powerful. On one level, it's going through this journey together, but on another level, it was, we were also processing it differently, not good or bad or anything. An example of that was I am more of a, just give it all to me right now. So like some of that information I had about Norse fires was, I got that by myself from the doctors.

Cause I was like, just give me everything that could possibly be. My wife was in a different camp and again, stressing not good or bad. These were just differences. Hers was like, just give me what I need to know for the next day or the next two days. So what was interesting about that was I had this other information, but I, she wasn't somebody I could go to and talk about that with, because she, she didn't want that information yet, which I in hindsight completely understand.

Um, but it was also hard for me to always connect with her with where she was at because I was kind of on, it's like the shared journey, but we're kind of processing things differently. And on top of that, in terms of just the partnership and the marriage, there's the logistical parts that we're now dealing with.

We've now moved down to Aurora, Colorado, where the hospital was, we're renting out Airbnbs. And it was even hard to even talk about it because your brain is almost not even present enough to process, like what is happening. And you know, certain things would come up, we have to make this decision or this decision.

What do you think about that? What do you think about that? But for the most part, yeah, there's not even the space to say, Hey, how are you? How are you doing? Hey, I'm, afraid, I'm scared. There's not even the space because you're really just trying to get through the day. 

NICK FIRCHAU: Yeah. I want to read a little bit more from the post that you guys made on Facebook at this point.

Again, this is from March 30th, 2023. So you're more than a week into this ordeal. You've been at the hospital this entire time. You mentioned you guys were basically living in an Airbnb in Denver. So you could be close to the hospital. And you posted this on social media with a link to the go fund me page that you guys set up so that people could help with the cost of the apartment, food, and all that went into this.

You guys were missing time at work and, and all that went into this. And this struck me what you posted because you started your post with a quote from the book, The Boy, the Mole, the Fox and the Horse, which is a very popular children's book written and illustrated by the British author, Charlie Mackesy.

For people who don't know, it's about a boy and these animals, and effectively they're looking for a home. 

And here's the section that you cited in your post, quote, What is the bravest thing you've ever said? Asked the boy. Help, said the horse. Asking for help isn't giving up. It's refusing to give up. And I think a lot of men, even in times of crisis, I think they have a hard time asking for help. It requires a lot of vulnerability. How did it feel for you to ask for help? 

ROB FLANAGAN: I struggled. You know, I grew up in a very, I mean, it was, it was an amazing childhood, but it was a very stoic household. Uh, my mom grew up in a pretty traumatic and she, she really created an amazing thing for herself by pulling herself up by her bootstraps.

My stepfather, who's my dad, he raised me. He's, uh, from Holland, was raised in Holland as a farmer. He got to where he is through his bootstraps and it's very, you know, keep a stiff upper lip, don't complain about too many things. And and there's so many powerful, positive things about that. Like I wouldn't be where I am today without that messaging.

And none of that was intended from my parents, but I kind of have developed for myself, it's not from them, this kind of idea at times, like not to ask for help. I don't, it's just kind of there. I'm uncomfortable with it. And so putting in that quote in many ways. Was this permission to me to lean on people and knowing that if I wanted my daughter to get better, if I wanted to actually lean into this acceptance, I also needed to lean into support and a family and a community.

And my wife says this, and I forget what it's called, but he's like, you're either an island or a wave. So it talks about like in marriages, like somebody who's either a wave, they like to kind of connect or you're an island. You like to kind of be like, I'm the island and I'm an island. I got, I got a moat around me. I got a reef around me. 

I needed to get off my island. And the outpouring of support, I honestly don't know how we would have gotten to this point where we are today with that level of support from family, friends, community, people that I haven't talked to in 10, 15 years. Very powerful, but still to this point, not always easy for me to accept.

NICK FIRCHAU: You mentioned that upbringing and the benefits of it. And I agree with a lot of that. Like we've had a number of guys come on this show. I think who have a shared experience when it comes to how to deal with a crisis or what to do with your emotions, but how are you dealing with all of this during this, like, could you stop for a minute and actually sit with what had just happened to your life? 

ROB FLANAGAN: You know, I don't remember thinking this consciously during the moment, but it seems to be what was there. It was okay. We're going through this event. My wife is going through so much of this. I have to hold it together. So Saoirse can be okay. And my wife can be okay. And not that my wife in any way was like requesting that of me, and she never said you got to, I just do it, but in hindsight, I think in many ways, as we get onto the year, I'm like, Oh, I don't know how much of this I've actually integrated into my life or my emotions.

I think I'm maybe just starting to process grief of who my daughter could have been. But I don't know what to do with sadness. I literally like, oh, I feel it, but okay, now what do I do?

NICK FIRCHAU: Back in the ICU at the Children's Hospital outside of Denver, Rob Flanagan and his wife Dana spent more than a week waiting for their daughter to wake up. Saoirse had been given a series of heavy medications in an attempt to stop her seizures. And doctors had informed Rob and Dana that they suspected their daughter was experiencing something called Norse fires, which, according to the Norse Institute, is a clinical presentation in which healthy people are suddenly struck by prolonged seizures that do not respond to at least two anti seizure drugs and do not have a clear structural, toxic, or metabolic cause. Norse tends to affect primarily young adults and children with no previous history of epilepsy. In other words, Rob and Dana didn't know why or how all of this began, when it would end, or what state their daughter would be in if and when she woke up from being intubated days before.

We do not know the effects of the ongoing seizures on her brain or functioning and what any of that will mean for her and us, the couple posted on Facebook on March 30th. We have been told to anticipate an intensive recovery and rehabilitation period at the hospital at an outpatient over several months and perhaps much longer and ongoing multidisciplinary support for years.

ROB FLANAGAN: She was on the hardcore drugs and they had stopped the seizures, but you can't live on those drugs. So they're weaning her off those drugs. But as they're weaning, the seizures are still happening. So they've come to us and said, you know, somebody of her size and her age can't be intubated for too long.

And so we're going to move towards a direction of taking her off the breathing apparatus and the feeding tubes, but the seizures are still happening. So we're going to have to continue figuring out the seizures while she's here in ICU and off of the breathing apparatus and everything. And that, that's pretty much the basement because it's like, okay, we haven't even been able to stop them.

They've been somewhat controlled, but they're still happening. And each one we have now learned that each seizure is injuring her brain. And so we just know each of these seizures are just causing these lesions and the scarring on her brain. And, and we're going into this moment of them having to take it.

And that's what they're speaking to at that point is, you know, planning on being there for months on end. So they can try to get the seizures to some kind of place. And they're letting us know that there's a world where they may never figure that out. That she may, for the rest of her life, have seizures once a day, once a week, nobody knows.

And so we go into a Sunday, when they're about to take out the tube, and we didn't at the time put too much on it, but they said, Oh, you know, we got the last EEG, she's been seizure free for a couple of hours, six hours. And she had just also gone into, uh, medical ketosis. So the keto diet can help with seizures, and they put her on, uh, medical keto.

That had kicked in. So, you know, we hear it, but, you know, we've heard it before and seizures, you know, you don't wanna get your hopes up, but we didn't know if she would recognize us. Could she speak like this was like the moment of kind of knowing and I have this video of where, you know, she asked for, uh, my wife, uh, she asked for her grandma.

I was third that she asked for, which was pretty normal. I was just happy to be in the group. And then probably about three days after they took out the tube, they did another EEG and she had been seizure free. And there's a lot that's happened, but to kind of jump ahead, we're, we're now going on close to a year and we haven't seen a seizure since then.

NICK FIRCHAU: That moment when she came back to you, when she asked for your wife and her grandmother, and then you, even though that's like a positive moment, because you've avoided the worst case scenario, you still didn't know at the time what kind of person she would be. So I have to guess that like the optimism you experienced till must have been very fragile. 

ROB FLANAGAN: Fragile. That's honestly the best word I've heard. Cause we, we, we still just didn't really know. To what degree of functioning she was going to come back at, over the next couple of weeks, it became clear she knew who we were. She had memories of the past, which they said she may not have, we started doing different types of testing and we were starting to see that there's going to be some reading, writing, arithmetic, speech delays, things like that, but her personality is 100 percent there. 100 percent and every day it's coming back stronger and stronger and stronger. 

NICK FIRCHAU: Wow. So I want to read from another update that you guys posted and this one actually comes from April 7th. So almost three weeks after the first seizure.

Our biggest update in the past week is that Saoirse was discharged from the ICU on Thursday. She is stable and breathing on her own. It appears that the regimen she is currently on, both anti seizure and anti inflammatory meds, as well as a ketogenic diet, are controlling her seizures. So at that point, what was she going through in terms of rehabilitation? And more importantly, Did you guys have any idea of what life would look like? 

ROB FLANAGAN: Yeah. And we don't know what life's going to look like and nobody knows, even. And so we kind of get out and we're going into the summer. And I would say the summer, especially for my wife, was probably the hardest because, you know, I'm getting back to work.

She's starting to keep some level of sanity and normalcy. She's doing a little bit of work, but, you know, she is in a completely different capacity level. So even when she first came out, like some of the medicine we had to give her was through a needle. So for like the first week or two, we're having to give her shots, which was hard to do.

We're having to keep track of all the medicine. We're going into speech therapy, physical therapy, occupational therapy. We had to learn how to parent differently. And because, you know, where her brain injury is very generalized speaking, if you're parenting, it's some form of positive and negative consequences in some, some form.

And with where her brain injury is, she doesn't process a negative consequence to her. It's all just being reinforced. So if she does something that's dangerous, like running across the street and I yell, don't cross the street. What I've actually just done is reinforced to her to cross the street.

She doesn't process it the same way. So you have to work with something like crossing the street in a very different parenting sort of way. Hey, you didn't cross the street that time. Great job. And it's very hard to stop that instinct if they're doing something that could be dangerous. And sothat's, it's a real life example.

She crossed the street, I yelled and it turned into a thing for like three or four weeks where now she just starts trying to run across the street. And then we have to work backwards from there and kind of learning things like that. Hey, we're, if we're going on a walk, Hey, we just, we're walking really calmly. This is really enjoyable. So you're having to more proactively think through communication and then stopping every instinct when something's about to happen, that's dangerous, which is really hard if not impossible. You know, we have to measure all of her food because she's on medical keto. So everything we make, we have to plan ahead.

Any trip we go on, we have to plan ahead for the food. And my wife's just been so amazing taking that burden on. 

NICK FIRCHAU: This is from the last update that you guys posted, and this one comes from May 23rd, 2023. This is sort of the beginning of the summer. You're talking about here. Saoirse is very much herself with her kindness and spirit, but many of the differences for now are internal and related to cognition, memory and impulse control.

Our excellent team continues to be positive and will work hard with us these next few months. All eyes are set on starting first grade in the fall. Stronger than ever. And yeah, last fall, she did start the first grade.

ROB FLANAGAN: Yeah. She's in first grade. You know, she has, you know, what they call nowadays a special needs.

So she gets pulled out of class periodically for extra help on reading arithmetic, speech, and some other things. We also support that at home as well. You know, but she's making friends, she's starting to kind of learn this new normal for herself as well. It's a different world of first grade than we ever expected.

NICK FIRCHAU: How much does she know about what happened? Like, do you guys talk about it at all? 

ROB FLANAGAN: No, we do talk about it. Um, we've always been very open about it. There's been these moments with her where I swear it is like a guardian angel is like talking through her. So there was this one moment where she was, you know, just kind of navigating some impulse control things.

And she says to me, Baba, my brain tells me to do something every day. And every day I have to fight my brain and it's really tiring. And I was just like, Oh my God, like, where did that come from? And I was driving her to school one day, you know, just kind of innocuously was like, Oh, we're hitting lots of red lights.

And she just goes, Baba, some days are red light days. I mean, they just say these, like, brilliant things. I got to remember that. So she'll talk about it. Sometimes she'll say, Hey, I have seizures or somebody talks about food. She'll say, I can't have that food because I have seizures. So we're very open about it.

We make a point to talk about it to the degree that she wants to, or is able to. And as we come up on the year anniversary, we're talking about having like a ceremony with her and she wants to go to McDonald's. So there's a McDonald's keto thing that we can actually make up. It's kind of crazy. So we're going to go there with her scale.

And we're going to buy the McDonald's kid meal and turn it into a keto and yeah, that's what she wants to do. 

NICK FIRCHAU: Now, a little more than one year removed from Saoirse's first seizure, Rob and Dana's lives look somewhat similar to what they were before. But obviously there are some dramatic differences. It was only recently that they let someone else watch their daughter for any period of time.

That was less than an hour. As Rob mentioned, Saoirse has been seizure free since she was in the hospital last spring. But anyone who watches Saoirse still has to have training in how to deal with seizures. Babysitters with those qualifications are rare and expensive. And even if they weren't, Rob and Dana just aren't quite ready to go there yet.

They haven't spent a night away from her since the first seizure, and I didn't realize it until later, but asking Rob to turn his phone off for this interview, which took place a block from his house and lasted just an hour, even that made him a little nervous. 

ROB FLANAGAN: You're never a hundred percent relaxed.  I can't speak for my wife, for me, I'm not you, you making sure you have a phone. My wife and I both got smart watches that can get phone calls in case we forgot our phone. We can be reached. Or if I, if she, my wife is in a yoga class and something happens, I can call her and she, she won't be out of pocket.

It was even just this, my wife called me at work yesterday and my immediate thought was like, what's happening? Are you okay? Is everything okay? No, uh, the plumber called me. I was like, Oh yeah, that's right. The plumber's coming today. It's always in the back of your mind. I mean, even now we're doing this podcast.

Hopefully it's going well, but there's a part of my brain that is like, Oh, like, is there a text or something that may of what could have happened?

NICK FIRCHAU: You've kind of hinted at this new life or a new reality that you have, after all of this happened, how do you focus on the reality of what your life is now and not focus on what could have been if this hadn't happened? 

ROB FLANAGAN: I'm trying to see how to say this, but it's really about observing the emotion without judging where that's at and being okay with it.

So if there's a moment where I'm just feeling this sucks, this, this really sucks and being okay, feeling that way, being aware of, you know, there was a test from the school. She had scored wherever she scored. And I saw it and it was very emotional when I got that and I cried. I was on a work meeting where we do a personal check in and it came out of nowhere.

Like I just started tearing up and crying in front of like work people on a zoom call, which is always a good time and just being like, that's okay, that's okay. And it's kind of what I spoke to in the beginning, the seesaw of acceptance while still holding that the world can be supernatural and amazing things can happen.

There's still a seesaw. Now, the seesaw is kind of the gratitude and appreciation while also recognizing that things are different, that there has been a sort of death of sorts in terms of where our lives were going versus where it is going currently, and it's all tied together to this year anniversary in a really positive way.

And yeah, and the gratitude I feel is, is, is something I've never felt before in my life. 

NICK FIRCHAU: Here's the last one for you, Rob. Maybe it dovetails with that answer. Um, how do you think all of this has changed you as a father? 

ROB FLANAGAN: I think before this happened, I was a really good dad, but now that this has happened, I'm an amazing Baba. Baba is what she's always called me. Cause she couldn't say dada. And when you really start to look at what Baba means and, and different languages and different things, it's a very powerful word that has a lot of spiritual connotations to it. I've learned to be more patient. I've learned to listen and probably one of the most powerful lessons for me, this kind of brings it full circle.

The day this event happened, before I knew what was happening, it was, how do I deal with work? How do I deal with work? You got to call a spade a spade. If that's my thought, that's my priority. If my daughter's my priority, then, oh, she's sick. I'll be at home with her. And that has completely shifted. A lot of things before this happened, In terms of parenting, my, my attitude at times, and I'm almost embarrassed to say, was like, I have to go do this.

Oh, I have to go do this with her. I have to go do this. Oh, I have to, I have to, I have to. And now, 99 percent of everything with my daughter is, I get to. And it's a very powerful place to be. 

NICK FIRCHAU: That's husband and father, Rob Flanagan. And little postscript here, upon the one year anniversary of Saoirse's first seizure, just about a week ago, Rob's wife Dana posted the following on social media as an update to Saoirse's progress.

Our doctors have called her a miracle and one of the most resilient kiddos they've seen. We are amazed and in awe and hope that with more healing and all the incredible support, she will continue finding her Saoirse way. Thank you to everyone who has been with us, near and far. We are celebrating.