008 : Happy Birthday, Brianna

It's been three years since May 7th, 2017, when Brianna passed.

As a way to come together celebrate her birthday on May 11th, and support her and her family's efforts to continue the Poulsbo CF Walk, her family talks about all things Brianna, how as a family they overcame the obstacles that cystic fibrosis introduced, and Brianna fought her best to live.

Through Brianna's life she was a role model, inspiration, and leader to so many, including her family. 
As an advocate for Cystic Fibrosis through many efforts, her family has committed to the yearly walkathon for Great Strides, Cystic Fibrosis Foundation, and the Poulsbo CF Walk.

 Here's our chat. 


FAMILY:
Jim Oas: Father
Valarie Oas: Mother
Kristen Johnson: Sister
Justin Oas: Brother

Please help Brianna help share her fight to make CF Stand for Cure Found and donate to her family's walk: DONATE.PoulsboCFWalk.org

Facebook:https://www.facebook.com/PoulsboCfWalk/ Instagram:https://www.instagram.com/cfwalkpoulsbo

RECORDED: April 25, 2020 (Audio Only)

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Transcript

SPEAKER_00 1:29

However, the pain resides differently in those around two. Each of us lose someone different. For me, it was my wife and my best friend. For others, it was their friends. For the family, it was their daughter and their sister. And then we all act differently. So unintentionally making it difficult to return back to normal. One of the largest things Brina's family did to overcome their uncomfortable feats to stick by process back when Brina was back. The form of flights energy and the product of many. Unsurprisingly, after three years and Brianna's ones, the first time we gathered together since our past year in episode eight. We found a strength in talking about Brianna. Welcome to the Fujitre Attitude Podcast, three meetup podcast at TwoJourAttitude.com. I want to welcome everybody. It is her birthday coming up. This podcast is going to air uh May 10th, and uh the day after May 11th is actually Brianna's birthday. Uh it's been three years, four years. Wow. Um so I want to welcome uh her mom, her dad, her brother, and her sister. Uh her dad uh Jim, her mom Valerie, uh her brother Justin, and uh her sister Kristen. Everybody, welcome. Thank you for being here today. Um first I want to uh have uh uh I I think Jim and Valerie uh kind of talk about um Brianna, um the diagnosis, um, and kind of leading up to I guess the yeah, uh all the way to the diagnosis and um uh kind of working into the walk and such.

SPEAKER_04 4:20

Well, when Brianna was uh firstborn, she went through for the first year a lot of lung infections that nobody thought would lead into a diagnosis of cystic fibrosis. She had bronchitis a lot, and uh in fact, for the first three years she was going to the doctor a lot with uh lung infections. And Valerie, go ahead and tell how we handle that.

SPEAKER_06 4:41

Well, Brianna being our third child, um wasn't you know, we weren't new to being parents, but um we'd had a rough start um through the whole pregnancy. We had had some some issues, um and so it was it was difficult, you know, uh wondering what was gonna happen when it came time for her birth. And when she was born, she was healthy, perfect little girl. But then as time went on, um she just got sicker, and we had gone to every doctor that we could possibly go to, and the diagnosis at six months was failure to thrive. And so we tried everything, and you know, it was like, well, hopefully she will, you know, outgrow this and we'll just keep going and doing everything. We've gone to different physical therapists and different kinds of doctors to see what you know, we hoped nothing would happen permanent to her muscles and all of that. But um, you know, after going to so many doctors and figuring what is the problem, and it wasn't until we ended up going to children's hospital um that we ended up going to the right doctor, and uh Dr. Ramsey took one look at Brianna and said, not failure to thrive, I believe it's cystic fibrosis.

SPEAKER_04 6:21

Okay, so Brianna had many lung infections in the first three years, and our pediatrician for her told us not to be frightened, but he was gonna send us over to um the pulmonary department at Seattle Children's Hospital. He said, I just want to have a test done over there, but don't be scared about it. I I don't think it's gonna be anything, but it's worth ruling this out. And so that's why we made an appointment to go over there. And Dr. Bonnie Ramsey told us later that in her career as a uh um cystic fibrosis research doctor and patient doctor, there's only been a couple of cases where she looked at a child and knew right away that child had cystic fibrosis for sure without doing the test. And Brianna was one of those cases. Valerie, you can tell us a little bit more about that.

SPEAKER_05 7:19

I was gonna say, yeah, you know, I thought that didn't when while you were pregnant, wasn't there a point where your doctor had had suggested that you know possibly that it would be dangerous and that you should not keep the baby?

SPEAKER_06 7:34

Yeah, I I didn't know if we should go into all of that, but you're right. Um we um uh did not know that I was pregnant. Um I had had some issues, uh some female issues. Um I had a lot of cysts and apparently one had burst and it was very painful, and I ended up in the hospital. Jim, we were down in San Diego, correct?

SPEAKER_04 8:01

Yes.

SPEAKER_06 8:01

Yeah. We were down there for work for him and didn't have a regular pediatrician for you guys or a doctor for myself, and so kind of at the mercy of finding whoever. And I ended up in an emergency and staying at uh a hospital in San Diego and then found out I was pregnant. They did not test at that time and trying to figure out what the pain was, they had done an upper and a lower GI and all kinds of tests. I just knew I was in pain. I had no feeling of being pregnant at all. And uh, that's when the doctor came in and told me they would advise me to terminate the pregnancy because of all of the tests that I had um had, you know, done to me. And so we don't believe that, you know, we wanted to terminate. That's just not how who we are. I already had two healthy children and it was it was very difficult because they the doctors, being the doctors, had said, you know, your baby could be, you know, no limbs or uh no spinal or all these things for all of the tests that I was subjected to. And it really weighed heavily on us, but we prayed about it and we knew that it was something that we just felt we had to pursue. Uh, you know, we could not not terminate that pregnancy. And then I had called my doctor up here, my OBGYN, and talked to him. We were down in San Diego, meaning being home here in Washington. And I talked to him, and he was just like, No, you're gonna be fine. You're gonna be fine. So that was what, probably at two to three months of pregnancy, Jim.

SPEAKER_02 9:53

Mm-hmm.

SPEAKER_06 9:54

That just happened. So, you know, all the normal things that you have when you're pregnant as a woman, you, you know, am I eating right, am I exercising right? Am I doing this? Am I doing that right? You have all those things that you worry about, and now this is added to it. And it just, it was, it was a hard time, but there I there is no regrets. There is absolutely no regrets looking back. It was a blessing to have Brianna. But when she was born, there was that scare thinking, what if, you know, and so when she was born, if she had all ten fingers and all ten toes and beautiful baby girl, it was like, see, you know, that was truly amazing. That was just a gift from God. So um that's how our journey started. And then to find out that she was having all of these sicknesses, you know, typical things that kids do, babies do have, and were having two other kids at the time, she was subjected to, well, whatever they brought home from school or whatever, and we just went on with our daily lives, but it just got serious and seriouser. Um, I don't know if that's a better way to say it, but with all of these infections and going to all the doctors constantly. And even I remember the one time going to a PTA meeting, and I think it was yeah, I think it was at uh Kristen and Justin both were at the same school. And I took Brianna with me, and I had one mom because Brianna was coughing or I don't know, it's just it just sometimes becomes a blur because it was just the way we lived. But the mom leaned over to me and said, Are you sure you should have your child out? And it was like, wow. I, you know, it just was kind of a setback for other people to start telling me and noticing. I just thought it was just a normal way of life. So um that hit hard because it was like, I'm I'm not careless. I'm very, very, very careful with my children. And and when I told the doctor, and we had a family doctor that we had had for years, and he was just, you know, it's okay. You're doing everything you're supposed to. Everything. Brianna is in the best loving care she could possibly be, but let's just see what we can do. So that was kind of the beginning of the process of seeing doctors on a regular basis. And but we had gone over to children's probably when she was about a year old, uh, because we thought maybe it's allergies, you know, could it be milk allergies? Could it be uh I was breastfeeding at the time, but we were getting closer to starting to wean her off, and we ended up trying goat milk. Do you remember that, Jim? I think Justin and Kristen, you both remember finding a goat form, you know, and and trying goat milk. And she was on that for a while, and but there didn't seem to be any changes. So we did do some allergy testing over at uh children's hospital, and I don't know if for any of you have had allergy testing. They tested this little baby, they clicked her all over for all these tests. It was horrible as a mom to watch your baby sitting there crying as you're poking all these needles all over her. And there was a few things that showed a little bit, but nothing to show the severity of her coughs and mucus buildup and all of that. So that was the first real hard thing to go through, I think. And as far as testing. And then when we did go over for the final one, um what was the do you remember she was two, Jim?

SPEAKER_04 13:59

She was three years old then.

SPEAKER_06 14:02

Yeah. Uh uh three when she had the diagnosis finally going over to children's and like we had said that Dr. Um Ramsey took one look at her, but they hadn't done the official sweat test, is what they do for CF patients. One of the tests that they had done then, and I believe they still do it now, they collect sweat. And that was I think we had first seen her during the week, and then we went back the following week to do the sweat test. And then uh we went back on a Friday. And do you remember that Friday when we got the diagnosis, Jim?

SPEAKER_04 14:41

Oh, very clearly, yeah. We were both in shock when they told us that uh she had been diagnosed with cystic fibrosis, and we didn't really know what that meant. We've heard of the word, but we didn't understand the severity of it uh until they explained everything to us. And uh, of course you're a little bit in shock, and one of your kids now has been giving uh an earlier perceived death sentence over a normal life. Everybody dies at some point, but they told us what the life expectancy was and what the health expectancy was, and so and they knew what it would be like this because they've talked to many parents through the years, but we were sort of in shock, and so they reassured us that uh they they would do their best to um to help us through this journey of uh hospitalizations and medical procedures with her, and and they they got us started on some um antibiotics for her right away. And uh so we were just I think we left the hospital kind of in a daze on that first day when we were told what the diagnosis was.

SPEAKER_06 15:55

Yeah, can I just interject? That day I will be ingrained in my brain forever because it was um a Friday, and for going to Seattle, we um you can drive around, but we usually use the ferry. And that particular Friday, um, do you remember what festival was going on? It's the biggest festival in Seattle at the time in the summer. Yeah, no, it was Seafair weekend. And the, you know, for us over here on our side of the water, going to seafair, unless you want to stand in line and you want to go to the festival, we avoid that area. But we didn't have a choice. We had gone early that morning over to Seattle. And by the time that we had got the diagnosis and had seen all the doctors and tried to connect on what our next step was going to be, they were sending home or sending to our house a nurse with medication. So we needed to get home pronto. Well, you don't get home quickly in Seattle, especially during C Fair weekend. And we went to the ferry terminal. The line was at least two ferry line wait, which is at least two hours. And we were in such shock. And I remember it it doesn't matter, it doesn't matter. We skipped through the line and went straight to the front of the line. We went around everyone, and we had people yelling, screaming, I mean, not nice things being said to us to go around. And when we got up to the front of the line, the police were up there and they said, You need to leave. They would not let us on the ferry. We tried to explain that we had just got a diagnosis for our baby daughter or in the back seat. We were in tears, we were crying. We tried to show him all the the reports that we had gotten from children's hospital, and he didn't care. It was you leave. And we drove around, Jim. Do you remember? It took us forever to get home. And uh, you know, when we finally got here to the house, the nurse was here and all the medications, and the that was another it was the hardest thing to realize that your house is now not a safe zone. It's now become a medical facility, it's a hospital. It was the wow, it was crazy. Do you remember that, Jim?

SPEAKER_04 18:21

Yes, I do.

SPEAKER_00 18:23

I I gotta ask, uh, you know, I as you guys go through this, I know uh Jim and Val, you guys are are parents, and so um, you know, you're kind of offset as as having to be the caretaker um in addition to the mom uh and the dad. Um but I I gotta ask Kristen and Justin. Um, you guys were younger, um but as this process is happening, uh we'll start with Kristen. But as your brother and as a brother and sister to your sister, and you're watching this happen, um what kind of what do you remember going through that um experience?

SPEAKER_07 19:03

Um I actually so I was four or five, I was five. I don't remember all of the stress or all of the heavy stuff that you know my mom and dad are talking about. And obviously at that age I was completely unaware of it. Um and so through kind of what they're talking about too, um, like when they got the diagnosis and everything, mom and dad, weren't we with grandma and grandpa? So I don't think we were with you guys, I feel like.

SPEAKER_06 19:36

Right. They were camping at the time, and um, because we had no idea how long this was gonna take, and it was um, yeah, you're right. You were with grandma grandpa Owis.

SPEAKER_07 19:50

So I think um that our mom and dad did their best at the time to um, you know, protect us from the stress they were feeling and protect us from all of the unknown and everything until um until they they knew exactly what the prognosis or diagnosis was and had a game plan. I remember people coming to our house, nurses and stuff, and just like any four or five, six-year-old kids, when you have a house guest coming by or a nurse or a doctor, we thought it was really cool, you know, that somebody knew was coming and they were always so friendly and um, you know, they were coming to help our sister. And so we didn't look at it, at least I feel um, I didn't look at it any differently. Um, I know growing up, our mom and dad were always aware or conscientious. And, you know, as adults, we talk about it, you know, that they felt bad, they didn't ever want to just naturally when you're caring for a sick child, you're giving more to that child um in need, or even when you have a child and they're not sick, if they're in need of something, you know, they've got your attention. And I know that uh mom and dad, you guys were saying you were just always wanting to really try to make sure that we never felt that we were missing out because we weren't getting as much of attention. And I never felt that way. I never, all of the the things that we did for free, we always did as a family. And so we were always excited to we all to do that with her, you know, and it for her meant being in the hospital and all that, but we were there with her in the hospital playing games with her and um trying, you know, being there as a sibling. It was just kind of like a package deal with all of us, you know, we were all there. I don't remember as a kid um during that time the diagnosis ever feeling worried or anything like that, because I think that, you know, like I said, at our age, we were not aware of the severity of what was going on. It's just that our sister was sick and we just thought it was a cold.

SPEAKER_00 21:58

So here so here. So they can kind of acknowledge it to learn how to teach it to you guys in a sense. Right. Right. So just Justin, do you do you remember any of that kind of uh growing up?

SPEAKER_05 22:33

Um Yeah, well, you know, not really. Um I don't remember, at least not clear clearly. I don't remember, you know, when she was diagnosed and when it initially started. You know, I remember all the treatments that she had to go through. I remember, like Kristen was saying, you know, nurses coming and and her doing her nebulizer and her clapping treatments. And I remember her taking her pills, but I think, you know, as a child, you just don't I mean, my parents were still learning about the disease and and what was, you know, the the long-term consequences or or what's gonna happen. So for us, we we didn't really see it like that, and it just became normal after a while. Um she coughed and it was just kind of like she was sick a little bit, but it it didn't seem severe, it didn't seem um that serious to me. I just think you kinda get used to it, and I don't even as as I grew up as a teenager and and older, I don't think it really seemed as that serious. You just kind of like, yeah, that's that's just Brie, that's you know what she's dealing with. Um and I don't think it was still until I was an adult that I really um I don't know, understood the severity of it and what she actually went through as a child and um what she was dealing with as an adult. Um she, you know, just a strong person to be able to just live a normal life as a kid and and have that with you all the time.

SPEAKER_07 24:02

I was gonna say I don't uh Bree always and mom and dad also always wanted her to have as normal of a life as possible. And she also never wanted to be treated differently. As she got older, like that was just ingrained in us that we don't treat her any differently. So, like you're saying, you know, she might be coughing, like, but it never woke us up at night. I remember, you know, when she was getting old enough to go to sleepovers and all of that, she was worried about keeping friends up and all of that, but it never woke us up. Like we just it was our norm.

SPEAKER_00 24:34

So uh so as this progressed, um, you know, the family's trying to learn the new normal. Um, but you guys found a way to actually come together uh in that uncomfortable uh uh and and by doing the walk uh and and with the foundation.

SPEAKER_04 24:54

Right. So um after she had been diagnosed and we had a number of months to absorb everything we just learned and and uh and start thinking about her life and what we were gonna do, Valerie and I started asking ourselves and talking about what could we do to help fight this disease. At that time, um there there was not the internet to use, and um we didn't know about the cystic fibrosis foundation, which was existing already, and they had a Seattle office, we just didn't know about it. And the partnership back then between Children's Hospital and the CF Foundation, there wasn't a partnership, and there's a strong partnership now. So we started uh trying to figure out what we could do to raise awareness and and maybe even raise funding for research. We didn't know what to do. So I started going through the Seattle telephone book, and I found the Systi Fibrosis Foundation in there. So I got a hold of them and we went over there, we met with them, we found out that just one or two years before they started um a nationwide walk-a-thon program called Great Strides. And so I think it was in year number two or year number three, we started a Paul's called Great Strides. And uh this year, if it wasn't for the virus we're dealing with, uh the coronavirus, it would have been our 28th walk. But uh we're gonna we're gonna put it on uh hold and do a virtual walk this year rather than a physical walk. But it would have been our 28th year. So we met with the foundation. Uh, I joined a parent advisory board. Valerie got involved over there as well, and uh we started doing the walk-a-thon, and we were very involved from you know that this was the later in the year that she was diagnosed, and uh so we were we've been involved with the CF Foundation ever since then, and that was a way that we could raise awareness and raise funding, and uh it's it's been rewarding, and our whole family's been involved from uh Brianna's grandparents um to her her siblings and school friends and groups, and uh we've raised you know thousands of dollars. I think our highest uh one year total is about 32,000. Uh and Paulsbow is a community that we live in of about 10 to 12,000 people, so it's not a huge community, but they came out and every year they come out and support this. Um, and so we don't know when we're going to stop doing the walk, but we're every year so far we have come together and put it on, and it it's healing to do something when you seem so out of control with a disease like this, and uh it it helps you to feel like you can actually do something that you can control. And I think Brianna felt like that every year too. And uh so we're coming up on three years since she graduated to heaven, but we're still doing the walk, and it's still healing for us.

SPEAKER_06 28:19

So I was just gonna say, can I jump in? I I I know that uh you were asking about the walk. When we got the diagnosis from Brianna, we are very close family, and thank God for that. I mean, we are, you know, uh whatever we do, we all do together. And that's exactly what Brianna needed, and it makes me feel good to hear both you, Kristen and Justin, saying that you didn't notice because it was it was difficult at times to not feel that I wasn't spending enough time with each one of you that it went to Brianna because we were either in the hospital or doing her medications here or whatever. But when it came to doing something, I mean you feel as a parent uh, you know, you don't have control over this. And it's very hard, especially as a mom. You want to fix this. I mean, you know, there isn't a mom in the world that wouldn't take the pain and the suffering away from their child, you know. That's just that's just what we do. And so it was like, okay, what can we do that's positive? And the one thing that I noticed what I had said briefly when um I take Brianna with me, and I'd had different moms, different people saying, Why would you take your child out when she's so sick? So the positive thing for me to do was to get that awareness out there because at that time, I know we didn't know was cystic fibrosis, where did it come from? What was it? You know, and everything that we did look for at that time to see for the future for her was doom and gloom. So to get awareness around here, to make it easier for us to go somewhere was, you know, people weren't going to catch what Brianna had. Her cough was not contagious, it wasn't something that she was gonna give to other kids in her class. So it started with being involved in PTA, being involved in the school, and then it grew from there, being involved in the community. And then, yeah, you're right, Jim. When we when we did become parents involved in uh a group, a parent group over at Children's Hospital, we were at the very beginning of those stages. And because at that time, cystic fibrosis patients could be around each other, and so there were different functions that we did so that Brianna didn't feel isolated, that it was just her. She could share. And it was good for both Krista and Justin, even though you were really young and don't remember a lot of those things, you could meet other siblings and other families and didn't feel like this is just us. We are, you know, we're the weirdos or whatever, you know. So that's the beginning of how we started getting involved in awareness and the walk-a-thon and doing something positive. I mean, that was something that we could control, I guess, in a way.

SPEAKER_02 31:21

Yeah.

SPEAKER_06 31:22

Um, and here we are, 30-something years later. I mean, it's amazing. It's amazing.

SPEAKER_00 31:27

Um and you you said that, and I actually as you guys were talking about that. That was something that I was I was gonna mention. Um you literally took a diagnosis that's new. Um and with health, you have really no control over it. So you guys can't get it. It starts to arise and inspire. Um, how did you kind of perceive that and at the same time? What kind of things um even all the way till the end started to inspire you um that you saw on your sister?

SPEAKER_05 32:45

Well, I remember um when she was younger, I remember she did, you know, she would volunteer to do a lot of research um with the children's hospital uh with CF. Um and then I I know with the walk, um, you know, just the way Brie was, something about her caught people's attention. And I I I don't remember all the details, but I know that um one year they asked her to go to the gala as a um like a what was like a keynote speaker or something, dad. Um you know, she just Brie didn't like being in the limelight. She wasn't the kind of person that wanted attention, um, especially when it came to CF. You know, that wasn't what she wanted people to know her for. But I think it's one of those things sometimes that's the best person to have and that that type of um position because um she she cared about the CF community and she uh cared about people in general, but she thought that she could use her diseases um as a way to I don't know, share her experience with other people and and provide a little bit of hope. And that's you know, that was just that was one of her talents. Um so I remember her speaking at the at the gala and um as she got older, you know, she did more and more things like that where she would um she continued to uh volunteer for research, you know, hoping that her uh her little things that she could do might, you know, help find a cure for CF. Um as an adult, I think I don't know, I don't I don't I I'm not I'm just assuming, but I think she got to a point where she realized that, you know, maybe there wasn't gonna be a cure in her lifetime. Um, but she never stopped wanting to help try to find that cure and continue to to put herself out there to do what she could do for other people that had CF, you know, for the new CF diagnosis, the new patients. Um I don't know, it's it's just kind of even now it's still motivating when I think about all the stuff that she did and all that she went through, um knowing how tough it was and all the stuff, other stuff she had to deal with every day. And she just never gave up. She never uh let it you know get get under or get over her, I guess.

SPEAKER_07 35:18

Well, and I think also I wanted to interject to like we had said earlier that she always wanted to be treated normal. And the double-edged sword with cystic fibrosis is that kids don't look sick. They look like any other child walking down the street, and you don't know that they're sick. So that helped in a lot of ways in that Brie didn't appear any different. She was coughing a lot, but people can cough a lot when they have asthma or when they are, you know, fighting allergies. And so when she wasn't in the hospital and um, especially as a child, um, you know, the the saving grace was she just looked like a plump, healthy kid because of the weight gain because of, you know, the medications and her pain and curse not working, you know, et cetera. And so it made it easy for us as children to not realize that she looked sick or not treat her any differently because she didn't look different to us versus a child that might have an you know very um you know prominent physical handicap, let's say, or something like that, you know, that you would see. And so um, even as an adult, as she got older and became, you know, an adult, she didn't allow cystic fibrosis or disease to hinder what she had in her sight. So it might have put little hiccups in it, but she still drove herself forward. And that allowed her to not focus on being sick, but focus on what what she was working towards. And it also allowed people to treat her, you know, as a driven individual that, yeah, was, you know, sick and fighting this, but not treat her any different than any other individual that was driving towards their goals of their life.

SPEAKER_00 37:10

And and that continued all the way till the end because I know when she passed, there was many people that were actually shocked and asking how did you pass because it it was uh uh so uh I don't want to say blind, but um it was hidden behind her strength. Um and and from what I thought too is something that uh uh you know she loved to be able to be that voice. Um Val, what what about you? What kind of inspired you as you saw her grow from um you know that that struggle of being diagnosed to uh you know the beautiful individual she became?

SPEAKER_06 37:43

Well, at times it was much of a challenge. Brianna was a very strong-willed child, and I think that's um that's what got her through. I mean, from the time she was her personality started to show into a toddler, into, you know, a young lady going to school, little girl, and then growing, she just became um uh very stubborn and strong, and it was um it's what got her through. It really is. I think that, you know, I think Justin said it right. I mean, to this day, I still look to her as my my role model uh because it didn't matter, you know, there were times where she had uh in school as she got older, friends were saying, Oh, this hurts, or I've got a headache or whatever, and she'd just like shake her head. She wouldn't say anything, but we'd talk about it in those late hours when we're in the hospital together or whatever, and saying, Man, I'm so tired of somebody saying that, you know, they got a sinus headache or they got this, whatever, you know, if they only knew what I was going through. And those those times that you know, she'd just tell me that and then she'd move on because she did go through an awful lot. I mean, um, so she just was very strong-willed, and that I had to, you know, in some ways uh let her have her own way. I don't know. I mean, I was thinking back when she was really little, and the pills, the first thing that they put her on were enzymes because her pancreas wasn't digesting food properly. So enzymes was what she needed, and she got up to take in eight with meals, and it was difficult. I mean, use any child when they're little pills, it just didn't work. We looked like a big pills, too. Yeah, they were huge pills, yeah. And there were so many families that would say, Can we just borrow your child for just a little bit to show how many pills she takes? Because I can't even get my son or daughter to take a baby aspirin, you know? And um, but it came with struggles too, because there were at least two to three times, major times, that she refused to take a medication, absolutely refused. And she turned out to be one sick little girl and ended up in the hospital. But um, you know, it was hard sometimes to motivate. I mean, parents go through this, especially now with COVID and you're having your kids home. But I mean, you do everything when it comes to bribing them, you know, whether you use a calendar, you use stickies, um, you know, little smiley faces on the calendars, or, you know, you're if you're really good all week, we'll get you a toy. I mean, we went through that, and it but it was just an everyday thing. And then finally, there was a doctor that Brianna had gotten very, very sick. And when she was in school, she hated missing school, and the hospital visits would be two to three weeks. And um, so when she realized that because of her actions, she wanted control, and so it was if the only way I knew how to control it was to refuse taking medications. And this doctor told her just flat out, she goes, I I left the room and she told me what she was gonna say to her and said, you know, she's gonna be, you know, very upset with me, but I'm gonna be truthful. And I think she was probably like seven or eight years old when it happened. And boy, it really resonated with her. I know that the talk on the way home was, well, people just don't understand. They don't have to do these medications. But slowly it worked on her when she got home, and she knew, okay, I probably do need to take my enzymes, probably do need to start doing my breathing treatments. I really need to, you know, watch that. Um, but it was a challenge, yes, it was a challenge as a strong-willed child. But we found as a family, like both, or everybody has said, we didn't treat her any different. She knew as she got older, it was like, mm, if you're not feeling good, maybe you shouldn't go with your friends, or maybe you shouldn't do this. Um, but then there were times that we let her do it, make her decision, and but she ultimately suffered the consequences because she would, you know, be down.

SPEAKER_00 42:21

It it's definitely one of those things that I I I guess if if I was to uh you know connect to that, it's um I would say being an outside person, you want the best for that person, but because you're not living through that struggle, um, trying to find the inner connections of you know uh helping them to do what you think best will help them physically a lot of but at the same time, uh still trying to help uh support their ability to live. Um and finding that inner uh that inner uh you know area, um, I guess would you say that's kind of you know finding that middle ground of uh support, but then at the same time encouragement.

SPEAKER_06 43:13

Right. Finding those compromises.

SPEAKER_02 43:16

Yeah.

SPEAKER_06 43:16

That was the big thing is trying to make a compromise with her. Um, and and it wasn't easy with a five and a six-year-old to compromise because sometimes you just can't. You just have to say this is the way it is. Um, but I think, you know, she has lifelong friends that knew her. And I would gladly welcome them when they would say, Hey, Brie, you know, you're kind of not looking so good, or even coughing a little bit more. Maybe we shouldn't do something. Maybe you should just kind of lay low and you know, but we can still be together, but let's just maybe read books or do something, you know. That was really helpful to have other key people in her life. That got to know her.

SPEAKER_00 44:02

Kind of help her overcome uh not submitting to the CF, but um, you know, uh uh acknowledging that it's you know time to address it again.

SPEAKER_04 44:12

I think we would go through points in her life where we had reality checks because she would go along like everything's normal, and then something would ramp up and you'd have a reality check, and you come right back to the point you know we gotta address this or do something different. And Val and I always talked about and strive to make all three kids uh feel like they were loved equally and that we invested in their lives equally. Uh but with with Brianna, we uh it did take more time uh because of her condition, but and we saw her growing, we saw all three kids growing in their own ways, but uh but this brought on some strengths of speaking in Brianna as she got a little bit older that we saw that was you know manifesting, and that was kind of fun to watch that. And um, but one reality check I remember specifically, and I think Kristen and Justin and Val, all three remember this, it was on Christmas Eve, and she started coughing up blood. And uh, so what do you do the night before Christmas? We we did get a hold of an emergency doctor at uh children's hospital, and uh she from coughing so hard and so often, um, which is a symptom one of the symptoms of cystic fibrosis, uh, she broke a blood vessel in her throat, but we didn't know uh, or maybe in her esophagus, she broke a blood vessel. We didn't know what it was from, other than she coughed up a spoonful of blood into the sink. And uh that was one reality check I remember very clearly that was pretty pretty scary until we found out what it was. And uh so then we got some advice from the doctor over the phone and and we were able to get through the night and and move forward. And uh so I think all through her life, from an early age, you know, growing up, we would go along and do all the things you'd normally do in life as a family, but then you'd hit these pinnacles or these reality checks that would pull you up short and have you reevaluate what you're doing and and where she's at with uh the disease at that time.

SPEAKER_00 46:31

So it's it's it's one of those crazy things right now where um you know here Brianna is just trying to live her simple life while all of us that kind of don't have those struggles um almost take that for granted. And uh especially right now with COVID, I think a lot of people are uh learning um and and kind of getting a firsthand experience of how um people uh that have a immunodeficiency have to kind of uh uh struggle with with that that role to try to get to that normal. Um, but at the same time um, you know, give her a bit of um uh um something to be grateful for um that some of us that don't have those struggles sometimes take for granted in that situation and with her birthday coming up. Um I kind of want to do one more round of um Brianna's not here right now. And uh she passed away. And um, you know, I I keep thinking, what would Brianna say? What would Brianna be thinking right now? Um, and what would be a message she would want to share to everybody? Um and I I kind of want to open that up to uh the round table again. Um and maybe Jim we'll start with you and and kind of go back to uh Justin. And um, but uh what do you think Brianna's message? Um, you know, not putting words in her mouth, but knowing Brianna and uh, you know, knowing her love for people and such. What you know, what kind of comes to mind as something she'd want to share to people um for hope and encouragement?

SPEAKER_04 48:11

I think she would say don't give up. It's easy when you face adversity to um to back away from it or to uh um procrastinate on doing something. And I think Brianna would say, Don't give up, but it's not about me, Dad, she'd say.

SPEAKER_06 48:32

It was never about her. It was never um Brianna was an individual that was given a death sentence from the time she was born that we didn't really understand. Um and she was such a loving and caring individual that she never thought of herself first, no matter even when she was the sickest, she was always thinking of somebody else. I looked through some uh some prayers and some notes and some things that she has, and it it's been difficult. It's coming up on three years, but it feels like it was just yesterday when she passed. And I remember we were very fortunate to have her pass here in our house, but I remember those last days when she was here, it was not about her. She was thinking about the rest of us. We were very, very lucky to have all of our family here to be present, and it was she was still concerned about the rest of us. Is everybody okay? You know, I she always thought of other people, and I think what she'd be saying right now, I mean, the whole nation is facing uh something that we've never had before, and I think she would be just, you know, like you said, you need to to to move, go on, and you need to support each other and think of other people other than yourself.

SPEAKER_07 50:01

So I'm gonna piggyback on that too. We're good at piggybacking, I think, because um I read a quote this week um and it totally screamed Brianna to me. And she uh was a very kind-hearted person, a very selfless person, never wanted to focus on her. She loved being out and advocating, and but not for selfish reasons, for selfless reasons, wanting to help all the other children being diagnosed with sex fibrosis and everybody, you know, and and what have you. And um, the quote that I heard this week was be good to people for no reason. And I I think that in our day of life, um, you know, whether you want to say, you know, nowadays that we've got electronics and all of that, or just a fast-paced world, and it keeps getting faster for all of us trying to accomplish this and this and this and this, it's very easy to get caught up in your reason behind what you're doing and whether it is good intentions or not good intentions. I think it's important for us to always remember to be kind to somebody because that's the right thing to do, and don't have an agenda or anything behind it, you know. And so when I when I read that quote and being good to people for no reason, I was like, oh my gosh, um that is that screams Brianna to me.

SPEAKER_05 51:38

Yeah. Well, I I think, yeah, I think you know, if Brie was here now, I think one thing she'd be thinking with this with COVID is you know, telling people to take it serious, you know, um she would be telling people to stay home. But uh I think that um, you know, one thing that like Kristen was saying, you know, she wasn't she wasn't the one that wanted to be in the limelight, she didn't want to pay attention, but she was very big on family and friends and fellowship and togetherness. And I think that um that's something that she would emphasize for everybody. I mean, we all know Bray was really big on getting together as a family um and and relying on each other to support each other and be supportive to each other. So I think that's something that she kind of instilled in in all of us and in all her friends. Um so to me that would be something she would she would be telling all of us.

SPEAKER_00 52:41

Wow. But before we kind of go into uh, you know, uh, you know, sharing about the the walk um and kind of that mission and uh and ask, um, is there anything that kind of comes to mind that you guys kind of want to um sum up our conversation? Anything that kind of is uh resonating that you'd like to kind of um state before we maybe wrap up?

SPEAKER_05 53:04

I I was thinking, um, you know, Nick, I think you mentioned um at her celebration of life, people were kind of shocked, you know, wondering what had happened, like how did she get so sick? And I always think, you know, Brie was good at hiding. I don't want to say hiding, but she didn't want people to know she was sick. She didn't like to share that part of her life. She kept that very personal. Um I just think you know, most people didn't realize what she went through, you know, as a child, and Nick, you know, as an adult, um, how many surgeries she had, how many medications she took, uh, how like how much she had to deal with, how ill she felt most of the time, and yet she still, you know, went to college, she still got married, she still had farms, she stuffed and she was really so sick, especially the last few years of her life. And it's just um I don't know. I guess that's inspiring to me and it's sad too, because I just know how hard that must have been for her. And it's just um I don't know, I think it's something important for people to realize, you know, she did all these amazing great things and affected all these people, and she was really carrying a a a heavy burden for her whole life, and and I mean, you know, it's hard to do anything when you're not feeling well, and she was not feeling well all the time, and sometimes she was, you know, really down in the dumps, but you would you wouldn't really know it, and I just um yeah, it's it's it's sad, but it's it's inspiring too.

SPEAKER_06 54:42

I know that there are a lot of people listen to the cliche, live your life, but Brianna lived her life. She did not let anything get in her way. She wanted to do anything and everything. And you're right, Jeff, no matter how sick she was, she did not let on and she pushed. She just she just lived. And I think that just has a lot to say for that. It's just she loved life and she lived it. She really there wasn't anything that she she took challenges on all the time in her day-to-day life and everything that she did. Because I know, Jim, we were told we were lucky if she would make it till she was in school, and then it was we'll be lucky if she lives until she's ten, and we'll be lucky if she makes it till she's in high school. She overcome and just kept going. And it was like we've taken that line and you draw the line, this is it. You kept moving that line and kept moving it and moving it because she just exceeded everything. And it just, I think it gave us all more to live for. Watching her was exciting, you know, to keep coming, overcoming everything that was thrown away. That was just, you know, truly a blessing to have had her in our family, and it made us who we are today.

SPEAKER_03 56:18

Right.

SPEAKER_06 56:18

Why, Kristen, you are a fabulous teacher. Justin, you are fabulous as a dietitian. I mean, it's just it's made us who we are as a family.

SPEAKER_07 56:29

Well, and the thing that I absolutely adore about, you know, my chosen profession is that, and even in life, actually, I mean, we daily, multiple times a day, talk about Brie. And even like when my kids talk about her and just listening to how they're like, oh yeah, when Anthony Brie did this, yada, yada, yada. But what I love about my, you know, career is that um I get to talk about her too. And she, you know, Brie is the why behind, you know, I I do what I do and work with kids. And um, and so that is fun because that's always a constant reminder that I love my job and I love what I do. And it was influenced because of my sister. And so um I love that, and I love that her spirit and all of that carries on.

SPEAKER_00 57:24

I love that. Um I I think this is a a good spot um to kind of uh uh stop. Um, but we do have a call to action. Um uh Jim, where is a uh a good spot to direct people um to maybe uh with this walk coming up and now that um COVID has kind of stopped it, um, as a way to have people um not support uh uh uh Brianna directly, but uh as a way to help uh with her no longer around to be able to support others because that's what she would want and that's what her drive was for. Um but how how can people donate to be able to help in her name and be able to uh help in the fight of cystic fibrosis um uh, you know, in in the spirit of Brianna's um, you know, care for others?

SPEAKER_04 58:15

Yeah, individuals that have a desire and are able to donate toward finding a cure for cystic fibrosis. We have a website set up that'll uh have a hot link and take you right into a the uh the ability to donate whatever you're able and and feel led to. And that uh website is donate.paulsboc walk.org. And Paulsbo is spelled P-O-U-L-S-B-like boy o. So it's donate.palsboc walk.org. And that will allow you to again uh donate toward the walk-a-con, which raises funds to find a cure for cystic fibrosis.

SPEAKER_00 59:01

Um that that link will take you directly to uh their walk, uh, which is the Great Strides Walk underneath the CF Foundation. Um so all the money goes into the CF Foundation, the largest cystic fibrosis foundation to help support um and and hopefully help others. Um and hopefully one day, uh, as Brianna always wished to make CF stand for care found. Um one of the biggest things Brianna always wanted is everybody to celebrate life for her. Um never wanted to uh you know uh pity or or uh but but uh acknowledge um you know the happiness and always have fun. Um that's why we uh did God's great dance floor um at the uh uh end of her celebration. Um but since her birthday is coming up, um I wanted to see if maybe we can end this by all of us maybe singing her a happy birthday. What do you think? All right. Um I'll start it off. One, two, three.

SPEAKER_03 1:00:04

Happy birthday to you. Happy birthday to you. Happy birthday. Happy birthday to you.

SPEAKER_00 1:00:18

Thank you everyone uh for coming on today. Um please go donate uh if if you have the ability. Um no pressure, but um if you're comfortable, donate. Thanks everyone for listening to FST Podcast as always.