Latest / The Uplifters / Kristy Jeansonne is Choosing Love Over Fear in the Face of ALS

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Kristy Jeansonne is Choosing Love Over Fear in the Face of ALS · The Uplifters

• 0:05
  SPEAKER_02: an uplifter is a compelling leader who tries to breathe life and hope into people
• 0:11
  SPEAKER_01: around them who listen and care and guide and help whose way of being in the world
• 0:19
  SPEAKER_00: inspires who uplifts with humor and understanding
• 0:23
  SPEAKER_00: Who leads by example.
• 0:24
  SPEAKER_00: Don't judge.
• 0:26
  SPEAKER_03: Vulnerable.
• 0:26
  SPEAKER_03: Bold.
• 0:27
  SPEAKER_03: Determination.
• 0:29
  SPEAKER_03: Who are here to create a better world.
• 0:33
  SPEAKER_00: Who can learn and teach.
• 0:35
  SPEAKER_00: Who encourages you.
• 0:36
  SPEAKER_00: Who shines their light to lead other people.
• 0:40
  SPEAKER_00: Who uses their best self in order to help others.
• 0:42
  SPEAKER_00: I found the life that I liked and I worked toward that.
• 0:46
  SPEAKER_01: We are all uplifters.
• 0:47
  SPEAKER_01: Mwah, big love.
• 0:48
  SPEAKER_01: Who do?
• 0:51
  SPEAKER_01: Welcome to the Uplifters podcast.
• 0:53
  SPEAKER_01: I'm Aranza Savas.
• 0:54
  SPEAKER_01: I've gotten to talk to a whole lot of inspiring and extraordinary women.
• 0:59
  SPEAKER_01: One of the things I've noticed about these women is that almost none of them
• 1:05
  SPEAKER_01: planned to be where they are right now.
• 1:08
  SPEAKER_01: And that it was through life circumstances and unexpected shifts that they found
• 1:14
  SPEAKER_01: themselves stepping into strength and this place that left the rest of us feeling inspired,
• 1:22
  SPEAKER_01: but maybe left them feeling like they were walking into a wilderness.
• 1:28
  SPEAKER_01: And I expect that every single one of you out there listening to this can relate
• 1:33
  SPEAKER_01: because life is full of surprise twists and turns.
• 1:36
  SPEAKER_01: And the story you'll hear today is big evidence of that.
• 1:42
  SPEAKER_01: I first heard the story of Brian Johnson at a moth event and was extraordinarily moved by his journey.
• 1:53
  SPEAKER_01: But I kept watching out of the corner of my eye, this woman off to his side.
• 1:59
  SPEAKER_01: And I looked over at my husband who was sitting next to me and I said,
• 2:02
  SPEAKER_01: I want to know her story.
• 2:05
  SPEAKER_01: So it is with great joy that I get to spend some time today talking with and
• 2:11
  SPEAKER_01: sharing with you the story of Christy Jansom.
• 2:16
  SPEAKER_01: Christy, welcome.
• 2:18
  SPEAKER_00: Thank you for having me today.
• 2:20
  SPEAKER_00: It's when you reached out to me, I'll try not to cry through the whole episode.
• 2:25
  SPEAKER_00: It's okay.
• 2:26
  SPEAKER_00: We're in this together.
• 2:27
  SPEAKER_00: When you had reached out to me in that same day,
• 2:30
  SPEAKER_00: I had a couple of other people reach out and generally the reach out is for Brian,
• 2:37
  SPEAKER_00: right?
• 2:38
  SPEAKER_00: I was like, that one was for me.
• 2:39
  SPEAKER_00: I'm like, no one ever reaches out to me.
• 2:43
  SPEAKER_00: And so then I read it, dug in a little further.
• 2:45
  SPEAKER_00: And then when you and I connected and I was laughing because you mentioned you saw
• 2:52
  SPEAKER_00: me off to the side and you were watching me.
• 2:55
  SPEAKER_00: And I was laughing because during rehearsal...
• 2:58
  SPEAKER_00: I was standing right next to Brian in the spotlight because generally I don't go
• 3:04
  SPEAKER_00: too far from him because his needs happen instantly.
• 3:07
  SPEAKER_00: And so I'm usually just right there.
• 3:10
  SPEAKER_00: Or if we've done another event, they just pull up a chair and I just sit there.
• 3:14
  SPEAKER_00: I'm off to the side.
• 3:15
  SPEAKER_00: It's his game, but I usually am there.
• 3:18
  SPEAKER_00: And at this rehearsal, they were like,
• 3:20
  SPEAKER_00: Oh, maybe can you take a couple steps to the side?
• 3:24
  SPEAKER_00: Okay, maybe a little bit more.
• 3:26
  SPEAKER_00: And then I was like, I paused them.
• 3:28
  SPEAKER_00: And I was like, guys, you can be straightforward.
• 3:31
  SPEAKER_00: You don't want me in the spotlight.
• 3:32
  SPEAKER_00: I got it.
• 3:34
  SPEAKER_01: Move on.
• 3:35
  SPEAKER_00: I'm not here to be in the spotlight.
• 3:37
  SPEAKER_00: I am literally just being attentive to my husband.
• 3:40
  SPEAKER_00: So I was like, I see the dark space over there.
• 3:43
  SPEAKER_00: I will, that is my spot.
• 3:44
  SPEAKER_00: I got it.
• 3:46
  SPEAKER_00: And which I'm fine.
• 3:48
  SPEAKER_00: I'm not there for the spotlight, but I just thought it was very funny.
• 3:51
  SPEAKER_00: And then for you to say, I was watching you.
• 3:55
  SPEAKER_00: It was just ironic.
• 3:57
  SPEAKER_00: It was funny.
• 3:58
  SPEAKER_00: And thank you for seeing me.
• 4:00
  SPEAKER_01: You had your own light over there in the dark corner.
• 4:04
  SPEAKER_01: And I was just so moved by that.
• 4:09
  SPEAKER_01: the gentle way that you set him up to be successful and the way that you lent focus
• 4:19
  SPEAKER_01: and really created focus for all of us on his story and an appreciation for who he
• 4:26
  SPEAKER_01: was just through your loving attention.
• 4:29
  SPEAKER_01: I think that is something that as women we do
• 4:32
  SPEAKER_01: in so many parts of our lives, but we don't necessarily get to observe the effect of it.
• 4:37
  SPEAKER_01: And so it was a real joy to get to reach out to you.
• 4:40
  SPEAKER_01: Now,
• 4:40
  SPEAKER_01: you and I are in on this secret about Brian's story,
• 4:42
  SPEAKER_01: and I think everybody else listening is probably like,
• 4:44
  SPEAKER_01: what?
• 4:45
  SPEAKER_01: So can you give us a little recap of the big shift that changed the trajectory of your family's lives?
• 4:52
  SPEAKER_00: Brian and I have been married for 21 years and we have five kids.
• 4:56
  SPEAKER_00: I was 19 and he was maybe 26.
• 4:58
  SPEAKER_00: I had a kid at 21, 22, 23.
• 4:59
  SPEAKER_00: So our kids are 19, 18, 17 years old.
• 5:11
  SPEAKER_00: 15 and 12.
• 5:12
  SPEAKER_00: Wow.
• 5:14
  SPEAKER_00: So our first four are all boys and they are biological boys.
• 5:18
  SPEAKER_00: I had all those babies.
• 5:20
  SPEAKER_00: And then once we decided that we were happy and okay with birthing no more babies, we
• 5:28
  SPEAKER_00: We both had always just had the desire to adopt.
• 5:31
  SPEAKER_00: And so separately before we were just something we both always wanted to do.
• 5:36
  SPEAKER_00: And we kind of talked about it, but it was just like one day it was far off.
• 5:40
  SPEAKER_00: Like when we're, you know, finished having biological children, then maybe we'll look into it.
• 5:45
  SPEAKER_00: And so when our youngest boy was 18 months,
• 5:49
  SPEAKER_00: we started the adoption process for a little girl and we wound up adopting her from Ethiopia.
• 5:57
  SPEAKER_01: It's like you're out there really just making your dreams come true.
• 6:01
  SPEAKER_00: Yes.
• 6:02
  SPEAKER_00: So we are, we're not dreamers.
• 6:06
  SPEAKER_00: We're doers.
• 6:08
  SPEAKER_00: We're very on purpose.
• 6:10
  SPEAKER_00: I'm a go-getter.
• 6:11
  SPEAKER_00: Like if I see it, we're going to get there.
• 6:14
  SPEAKER_00: Don't even question me.
• 6:16
  SPEAKER_00: Brian still hasn't learned after 21 years.
• 6:19
  SPEAKER_00: Somehow we're going to make it happen.
• 6:21
  SPEAKER_00: And it might not look what we wanted it, but it'll happen.
• 6:24
  SPEAKER_00: And we both were born and raised in the suburbs of New Orleans in a town called Kenner.
• 6:30
  SPEAKER_00: We picked up our five young children and moved to the city of New Orleans in the heart of the city.
• 6:36
  SPEAKER_00: We bought a beat up, run down old house and renovated the whole thing ourselves.
• 6:41
  SPEAKER_00: So in 2020,
• 6:44
  SPEAKER_00: when the whole world shut down for COVID,
• 6:47
  SPEAKER_00: we were gearing up for hunkering down with the seven of us in our house.
• 6:52
  SPEAKER_00: I think it was four weeks into COVID.
• 6:54
  SPEAKER_00: And prior to that,
• 6:55
  SPEAKER_00: Brian had a sprained ankle and he was kind of dealing with it on and off since October.
• 7:01
  SPEAKER_00: I was like, it's your sprained ankle.
• 7:04
  SPEAKER_00: It's your problem.
• 7:06
  SPEAKER_00: I'm not your secretary or your assistant.
• 7:10
  SPEAKER_00: You need to schedule those doctor's appointments yourself and be a big boy and make it happen.
• 7:14
  SPEAKER_00: And they just weren't finding anything.
• 7:17
  SPEAKER_00: So then like mama bear had to come out.
• 7:20
  SPEAKER_00: Something's wrong.
• 7:20
  SPEAKER_00: It's not getting better.
• 7:22
  SPEAKER_00: Something has to happen.
• 7:23
  SPEAKER_00: This is ridiculous.
• 7:24
  SPEAKER_00: And so of course I jumped in, took over like I do.
• 7:27
  SPEAKER_00: And again,
• 7:28
  SPEAKER_00: COVID had started though,
• 7:29
  SPEAKER_00: but this ankle and some other things were just starting to happen and the world was
• 7:34
  SPEAKER_00: shut down.
• 7:35
  SPEAKER_00: Doctors were closed.
• 7:36
  SPEAKER_00: They were not answering.
• 7:38
  SPEAKER_00: My best friend from my childhood is a pediatrician in New York.
• 7:42
  SPEAKER_00: She was in New York City at the time.
• 7:44
  SPEAKER_00: I messaged her and she was like,
• 7:46
  SPEAKER_00: okay,
• 7:47
  SPEAKER_00: well,
• 7:47
  SPEAKER_00: they have this big group in the medical community going on right now that we can
• 7:51
  SPEAKER_00: post things and people will respond and we can try to make things happen that way.
• 7:56
  SPEAKER_00: Crazy enough, she did that, posted it out there.
• 7:59
  SPEAKER_00: This guy was a resident of a neurologist here in New Orleans before he became a doctor.
• 8:06
  SPEAKER_00: So he was like, I have a contact with Dr. Edwards in New Orleans.
• 8:10
  SPEAKER_00: So this guy, I don't even know his name, nothing, called me.
• 8:14
  SPEAKER_00: And I was explaining to him all the things that Brian's going through.
• 8:18
  SPEAKER_00: And he's like, I just want to tell you, this does not sound good.
• 8:21
  SPEAKER_00: This is not a sprained ankle.
• 8:23
  SPEAKER_00: And I was like, okay, we need to get this ball rolling.
• 8:26
  SPEAKER_00: And he was like, I am going to put a call in to Dr. Edwards and see if you guys can get in immediately.
• 8:34
  SPEAKER_00: We walk into this doctor's office,
• 8:36
  SPEAKER_00: us and the doctor,
• 8:37
  SPEAKER_00: no nurses,
• 8:38
  SPEAKER_00: lights are not on,
• 8:39
  SPEAKER_00: like it shut down,
• 8:40
  SPEAKER_00: COVID.
• 8:41
  SPEAKER_00: The hospital is eerie.
• 8:43
  SPEAKER_00: We go into this appointment, tell the doctor what's going on.
• 8:47
  SPEAKER_00: And he does this four minute assessment and he sits back and he was like,
• 8:53
  SPEAKER_00: I really hate to be the one to tell y'all, but this is ALS.
• 8:58
  SPEAKER_00: And here in New Orleans,
• 9:00
  SPEAKER_00: we know what ALS is here because we have a famous retired NFL football player,
• 9:05
  SPEAKER_00: Steve Gleason,
• 9:07
  SPEAKER_00: who has ALS.
• 9:08
  SPEAKER_00: And so he even had a documentary come out a couple of years ago that our family
• 9:14
  SPEAKER_00: went to the movies,
• 9:14
  SPEAKER_00: we watched it,
• 9:15
  SPEAKER_00: and they actually live right in our neighborhood.
• 9:18
  SPEAKER_00: And so we are all aware of ALS here and we know what it does.
• 9:23
  SPEAKER_00: And so it was just hearing him say that,
• 9:27
  SPEAKER_00: I thought we were literally going to the doctor to get started to figure out what
• 9:32
  SPEAKER_00: is happening,
• 9:34
  SPEAKER_00: not to get a diagnosis.
• 9:36
  SPEAKER_00: And so it's just one of those days that just changes your life forever, right?
• 9:42
  SPEAKER_00: And so we took the news in and then the doctor,
• 9:46
  SPEAKER_00: even he was like,
• 9:48
  SPEAKER_00: I am 99.9% sure that this is what it is,
• 9:50
  SPEAKER_00: but I want you to get a second opinion.
• 9:53
  SPEAKER_00: And so about two weeks later,
• 9:55
  SPEAKER_00: we saw his colleague and she confirmed that it was ALS and then just kind of helped
• 10:01
  SPEAKER_00: us with like what we were going to need to do moving forward.
• 10:04
  SPEAKER_00: And so immediately from that, I contacted people, Steve Gleason, his main like caregivers.
• 10:12
  SPEAKER_00: One of them is a childhood friend of Brian's.
• 10:15
  SPEAKER_00: The other one was my kid's PE coach in elementary school.
• 10:20
  SPEAKER_03: Oh my.
• 10:21
  SPEAKER_00: So we already had these connections.
• 10:23
  SPEAKER_00: And so we were immediately able to get in touch with those guys.
• 10:26
  SPEAKER_00: And then we just did a deep dive right in.
• 10:29
  SPEAKER_00: And so for COVID, for us, it wound up being a great timing for
• 10:36
  SPEAKER_00: Bad timing on the doctor, getting things done like that.
• 10:39
  SPEAKER_00: But as a family,
• 10:40
  SPEAKER_00: and especially a family of seven,
• 10:43
  SPEAKER_00: I mean,
• 10:43
  SPEAKER_00: every single activity in our schedule was closed.
• 10:46
  SPEAKER_00: It was off.
• 10:47
  SPEAKER_00: We had made our own little neighborhood pod of eating dinner together every night and
• 10:52
  SPEAKER_00: our neighbor cooked.
• 10:53
  SPEAKER_00: She taught our kids how to cook.
• 10:55
  SPEAKER_00: And it just really became this really beautiful community experience.
• 10:59
  SPEAKER_00: And so we all grieved together.
• 11:02
  SPEAKER_00: We didn't tell our kids for a little bit because they were at such different ages then.
• 11:06
  SPEAKER_00: And we were able to explain it to our older ones, just different than our younger ones.
• 11:12
  SPEAKER_00: And again, ALS is well known here.
• 11:14
  SPEAKER_00: So they kind of
• 11:16
  SPEAKER_00: knew, I guess, what the end all would be because Steve was already trading at that time.
• 11:20
  SPEAKER_00: And so we just had days in bed of crying and days in bed of laughing.
• 11:26
  SPEAKER_00: And we spent a couple of weeks of being really sad.
• 11:30
  SPEAKER_00: But then it was like, okay, how are we going to live?
• 11:34
  SPEAKER_00: And immediately I planned this big surprise vowel renewal for us.
• 11:40
  SPEAKER_00: I didn't have a wedding ring anymore because when we were doing our adoption for Zoe,
• 11:45
  SPEAKER_00: we pretty much sold anything and everything we could to raise money for that.
• 11:49
  SPEAKER_00: And so we sold my engagement ring at that time.
• 11:52
  SPEAKER_00: He didn't know we were doing like this official wedding renewal thing,
• 11:56
  SPEAKER_00: but he wanted to get me a ring and it was just so cool.
• 11:59
  SPEAKER_00: We went to just like this little New Orleans shop
• 12:02
  SPEAKER_00: I'm not really like a diamond type girl,
• 12:05
  SPEAKER_00: but I wound up walking out with a diamond,
• 12:07
  SPEAKER_00: but it is a uncut,
• 12:09
  SPEAKER_00: unfinished,
• 12:11
  SPEAKER_00: raw diamond that is worth nothing probably to other people because it's not shiny
• 12:17
  SPEAKER_00: and glamorous,
• 12:18
  SPEAKER_00: but I love it because I feel like it really describes who we are.
• 12:21
  SPEAKER_00: And then the fitting was just molded to the unfinished diamond.
• 12:24
  SPEAKER_00: My dad was a jeweler for like 40 years and he was like,
• 12:27
  SPEAKER_00: Who would buy a raw, uncut?
• 12:29
  SPEAKER_00: There's no beauty to it.
• 12:30
  SPEAKER_00: And that's just it.
• 12:31
  SPEAKER_00: It's beautiful.
• 12:32
  SPEAKER_00: It's raw.
• 12:33
  SPEAKER_00: It's real.
• 12:34
  SPEAKER_00: It's natural state.
• 12:35
  SPEAKER_00: It was a beautiful time for us.
• 12:36
  SPEAKER_00: We just took ALS diagnosis head on.
• 12:41
  SPEAKER_00: One of the key things with ALS is to stay ahead of the game.
• 12:44
  SPEAKER_00: And so immediately, Brian started recording his voice.
• 12:50
  SPEAKER_00: And we took it as we're going to record his voice because ALS,
• 12:53
  SPEAKER_00: for those that don't know,
• 12:54
  SPEAKER_00: eventually it takes away your voice.
• 12:57
  SPEAKER_00: But you're cognitive the whole time.
• 12:59
  SPEAKER_00: You can feel, you have all your nerves work.
• 13:03
  SPEAKER_00: They just don't talk to your muscles.
• 13:05
  SPEAKER_00: And that's the problem.
• 13:06
  SPEAKER_00: They don't communicate.
• 13:07
  SPEAKER_00: And so your eyes always work and your brain always work.
• 13:11
  SPEAKER_00: I'm not a scientific type of person here, but it's like everything I think above your brainstem works.
• 13:17
  SPEAKER_00: So your mouth does not work.
• 13:19
  SPEAKER_00: and then your lungs and all your organs.
• 13:22
  SPEAKER_00: But it's different for everyone.
• 13:24
  SPEAKER_00: Nobody's ALS journey is the same.
• 13:26
  SPEAKER_00: And so,
• 13:27
  SPEAKER_00: but the outcome is two to five years is life expectancy,
• 13:31
  SPEAKER_00: because most people don't choose to do the things that could be life-saving because
• 13:37
  SPEAKER_00: it's hard.
• 13:38
  SPEAKER_00: It's a very hard life and you have to have the will to live and the will to
• 13:42
  SPEAKER_00: to go through the hard times and you have to have the support.
• 13:46
  SPEAKER_00: And overall, the worst part of the whole disease is it's expensive.
• 13:51
  SPEAKER_00: It's a very expensive disease because insurance does not cover what you need to stay alive.
• 13:58
  SPEAKER_00: I've always wondered, like, why do they say two to five years?
• 14:01
  SPEAKER_00: And now that we're at year four, I understand it now.
• 14:04
  SPEAKER_00: And it's really sad.
• 14:05
  SPEAKER_00: And it's mainly because people don't have the finances for it.
• 14:10
  SPEAKER_00: And we don't have the finances for it either.
• 14:13
  SPEAKER_00: But thankfully, we've rallied a community around us that supports us year round.
• 14:19
  SPEAKER_00: So from the beginning with ALS,
• 14:22
  SPEAKER_00: we hit head on,
• 14:24
  SPEAKER_00: recorded Brian's voice from the beginning,
• 14:26
  SPEAKER_00: not knowing if we ever needed it.
• 14:28
  SPEAKER_00: Maybe he was going to have a slow progression and not need it.
• 14:31
  SPEAKER_00: But we didn't view doing those things as sad.
• 14:36
  SPEAKER_00: We were never in denial about it.
• 14:37
  SPEAKER_00: It was just like, this is what you do.
• 14:39
  SPEAKER_00: If we're going to do this, which we chose, we're going to do it.
• 14:43
  SPEAKER_00: And immediately we got a team together to renovate our house to make it accommodating.
• 14:49
  SPEAKER_00: And I did not want the house to look like a hospital because that's not thriving in life.
• 14:55
  SPEAKER_00: Like if we have to look like he lives in a hospital, right?
• 14:58
  SPEAKER_00: And so I was just very proactive in...
• 15:02
  SPEAKER_00: looking the long run,
• 15:03
  SPEAKER_00: like what is best in the long run,
• 15:05
  SPEAKER_00: not short term,
• 15:06
  SPEAKER_00: because you do all these short term things and ALS changes so quickly that by the
• 15:10
  SPEAKER_00: time that renovation for this short term use is done,
• 15:13
  SPEAKER_00: he's past that season.
• 15:14
  SPEAKER_00: In our home,
• 15:16
  SPEAKER_00: we did everything where it's aesthetically looks like a beautiful home still,
• 15:21
  SPEAKER_00: but it all meets the needs of someone in a power chair.
• 15:25
  SPEAKER_00: And so that was a huge undertaking for our community to come in and to get that done.
• 15:31
  SPEAKER_00: during COVID.
• 15:32
  SPEAKER_00: Remember, everything is during COVID, like the shutdown of the world.
• 15:36
  SPEAKER_00: Every time you go to the doctor or what they have for ALS patients is called clinic.
• 15:41
  SPEAKER_00: So you go to clinic where imagine a round room and they have a patient in every
• 15:48
  SPEAKER_00: room and the doctors just circulate.
• 15:51
  SPEAKER_00: So we would see eight doctors in one appointment.
• 15:54
  SPEAKER_00: And that way we wouldn't have to travel and go to so many doctors appointments.
• 15:58
  SPEAKER_00: We loved going, but it was very long and draining.
• 16:02
  SPEAKER_00: But you would see your pulmonologist,
• 16:04
  SPEAKER_00: your neurologist,
• 16:05
  SPEAKER_00: your dietician,
• 16:06
  SPEAKER_00: your physical therapist,
• 16:08
  SPEAKER_00: your occupational therapist,
• 16:09
  SPEAKER_00: your pain management doctor.
• 16:11
  SPEAKER_00: And so we just got this beautiful relationship with all these doctors.
• 16:16
  SPEAKER_00: fascinating people that literally have to deliver such bad news all the time.
• 16:20
  SPEAKER_00: And so even for us going to those appointments,
• 16:22
  SPEAKER_00: it's like our goal was to go in there and just bring light into sadness that they
• 16:27
  SPEAKER_00: have to deal with all the time.
• 16:29
  SPEAKER_00: And so at this point, we are four years in with these doctors.
• 16:32
  SPEAKER_00: I mean, we have cell phone numbers, we chat, Brian talks to them over WhatsApp.
• 16:36
  SPEAKER_00: And so we've really have found this really great communities.
• 16:39
  SPEAKER_00: I mean, we have doctors stop over at the house and it's
• 16:42
  SPEAKER_00: really been a beautiful experience here with our ALS clinic.
• 16:46
  SPEAKER_00: Everyone talks to you as if you're dying.
• 16:48
  SPEAKER_00: Like that's kind of the way that it's looked at because the reality for most is it is.
• 16:54
  SPEAKER_00: And so they tell you, eat whatever you want, do whatever you want, just live life to the fullest.
• 17:01
  SPEAKER_00: Basically because they're saying you're going to die soon.
• 17:03
  SPEAKER_00: We had watched friends who had kids with cancer and they do their make a wish trip.
• 17:09
  SPEAKER_00: And I was like, I don't want to wait until we have to make a wish.
• 17:12
  SPEAKER_00: early on in our raising our kids,
• 17:15
  SPEAKER_00: we had decided that Christmas was no longer about gift giving and things like that.
• 17:21
  SPEAKER_00: So we did, we made memories.
• 17:23
  SPEAKER_00: Memories was our thing.
• 17:24
  SPEAKER_00: It is what we did.
• 17:26
  SPEAKER_00: We did family trips and on the cheap too, because like I said, there are seven of us.
• 17:31
  SPEAKER_00: We are not a high income family.
• 17:33
  SPEAKER_00: And we were, you know, seven kids.
• 17:36
  SPEAKER_00: I mean, seven of us in one hotel room.
• 17:38
  SPEAKER_00: Bring sleeping bags, kids.
• 17:40
  SPEAKER_00: Yeah.
• 17:41
  SPEAKER_00: But it was part of the fun.
• 17:42
  SPEAKER_00: Yeah.
• 17:43
  SPEAKER_00: And the way I would say it is, hey, we're not camping in a tent.
• 17:45
  SPEAKER_00: At least we're in a hotel room.
• 17:46
  SPEAKER_00: Okay.
• 17:47
  SPEAKER_00: That's right.
• 17:49
  SPEAKER_00: Perspective.
• 17:50
  SPEAKER_00: Yeah, that's right.
• 17:51
  SPEAKER_00: And so for Christmas morning, they would wake up and there was an envelope there and it was a trip.
• 17:58
  SPEAKER_00: They would read it.
• 17:59
  SPEAKER_00: Santa had this whole trip of spreadsheets
• 18:03
  SPEAKER_00: Planned out.
• 18:04
  SPEAKER_00: And that is what we did.
• 18:05
  SPEAKER_00: We did adventures.
• 18:07
  SPEAKER_00: And our kids loved it.
• 18:08
  SPEAKER_00: They expected it.
• 18:09
  SPEAKER_00: They hoped that that's what would happen the next year.
• 18:11
  SPEAKER_00: So with ALS, as soon as flights opened from COVID, Brian and I hopped on a plane to San Francisco.
• 18:21
  SPEAKER_00: He was in a wheelchair already at this point.
• 18:25
  SPEAKER_00: But he could like kind of shuffle still and rented a convertible Mustang.
• 18:30
  SPEAKER_00: It was big enough to fit our one suitcase in the back seat.
• 18:33
  SPEAKER_00: And I would have to shove that wheelchair in the back.
• 18:36
  SPEAKER_00: Then we drove Highway 1 all the way down for about two weeks.
• 18:41
  SPEAKER_00: We got to Coronado Bay,
• 18:43
  SPEAKER_00: which is where we were going to fly back home out of,
• 18:46
  SPEAKER_00: and got word that our kids were exposed to COVID.
• 18:50
  SPEAKER_00: And at that time, COVID was very, very scary.
• 18:54
  Right.
• 18:54
  SPEAKER_00: If you remember quarantining for 10 days and we didn't know what COVID would do to Brian.
• 18:59
  SPEAKER_00: I mean, the last thing we needed was his lungs compromised.
• 19:03
  SPEAKER_00: So our five kids where they were exposed was with my brother and his wife.
• 19:09
  SPEAKER_00: And so they were like, y'all may as well stay out longer.
• 19:12
  SPEAKER_00: So we decided to drive home all the way from Coronado Bay to New Orleans, Louisiana.
• 19:19
  SPEAKER_00: Oh my God.
• 19:20
  SPEAKER_00: And our little Mustang convertible.
• 19:24
  SPEAKER_00: And so, yeah, so that was the beginning of us making tons of memories with our kids.
• 19:30
  SPEAKER_00: And we did a lot of trips.
• 19:33
  SPEAKER_00: Two years into his diagnosis, we had just done a big trip to New York.
• 19:37
  SPEAKER_00: It was really a girl's trip.
• 19:38
  SPEAKER_00: It was for me with all of my girlfriends.
• 19:41
  SPEAKER_00: But Brian had to come along because I was his caregiver.
• 19:44
  SPEAKER_00: And I was the only one who knew how to do everything.
• 19:47
  SPEAKER_00: So he likes to say he was my arm candy for that week.
• 19:51
  SPEAKER_00: in New York.
• 19:52
  SPEAKER_00: And so he was fully wheelchaired at that time with a power chair.
• 19:56
  SPEAKER_00: And the only thing he still had at that time was breathing on his own.
• 20:00
  SPEAKER_00: That was our last trip.
• 20:01
  SPEAKER_00: And then two months later, he got the flu and it was the time to decide tracheotomy or not.
• 20:08
  SPEAKER_00: And it's a big decision because the tracheotomy is where the cost comes in.
• 20:12
  SPEAKER_00: After you have a tracheotomy, you have to have care for 24 seven.
• 20:16
  SPEAKER_00: You cannot ever be left alone.
• 20:18
  SPEAKER_00: The hospital trains you on how to care for it.
• 20:21
  SPEAKER_00: you do not get any home help.
• 20:23
  SPEAKER_00: Everything for us with caregiving is out of pocket.
• 20:26
  SPEAKER_00: And luckily I'm able to do it and I do a lot of it.
• 20:30
  SPEAKER_00: And our kids are now older teenagers.
• 20:32
  SPEAKER_00: And so they help a lot as well.
• 20:35
  SPEAKER_00: After the tracheotomy, once he learned and was at terms with, I live basically on a ventilator
• 20:44
  SPEAKER_00: It was kind of a change of mindset.
• 20:45
  SPEAKER_00: It's like, okay, so you're not going to die now.
• 20:49
  SPEAKER_00: So now what?
• 20:50
  SPEAKER_00: How does this life look like?
• 20:51
  SPEAKER_00: And that was a very hard mental game for him.
• 20:54
  SPEAKER_00: That's when he started writing his book.
• 20:56
  SPEAKER_00: He's always been a writer.
• 20:58
  SPEAKER_00: He's a speaker.
• 20:59
  SPEAKER_00: He's a gorgeous outlook on life.
• 21:02
  SPEAKER_00: So he started writing a book and he just got his...
• 21:07
  SPEAKER_00: vision one day for it.
• 21:08
  SPEAKER_00: It just snapped.
• 21:09
  SPEAKER_00: We were actually in Florida on a beach trip.
• 21:12
  SPEAKER_00: He got this vision and he was like, all right, I'm ready, ready to write the book.
• 21:16
  SPEAKER_00: Went home and he just took this like deep dive into writing like six hours a day.
• 21:21
  SPEAKER_00: I'm saying writing, but writing for Brian means typing on a computer using his eyes only.
• 21:29
  SPEAKER_00: So his eyes connect as the mouse to the computer that he has in front of him.
• 21:35
  SPEAKER_00: And he literally types letter for letter.
• 21:37
  SPEAKER_00: And so six months later, he has written a book, 83,000 words, all on his own.
• 21:45
  SPEAKER_00: not a ghostwriter, none of that.
• 21:48
  SPEAKER_00: He literally typed every word.
• 21:51
  SPEAKER_00: And for me in all of this,
• 21:54
  SPEAKER_00: prior to his tracheotomy,
• 21:57
  SPEAKER_00: I and the kids were his sole caregiver for two and a half years.
• 22:01
  SPEAKER_00: And I was at the point where I was ready to hop on a plane and never would come back.
• 22:06
  SPEAKER_03: Yeah.
• 22:07
  SPEAKER_00: I was so done.
• 22:08
  SPEAKER_01: It had to be exhausting.
• 22:10
  SPEAKER_01: No matter how much you love somebody.
• 22:12
  SPEAKER_01: I mean, I felt that way with just having like my first baby.
• 22:16
  SPEAKER_01: Right.
• 22:17
  SPEAKER_01: I was like, this is exhausting.
• 22:19
  SPEAKER_00: Yes.
• 22:19
  SPEAKER_00: Brian, I talk about this all the time.
• 22:21
  SPEAKER_00: So it's imagine having a newborn and they never grow up.
• 22:26
  SPEAKER_00: We joke, we have very dark humor in our house too.
• 22:29
  SPEAKER_00: It's fun.
• 22:30
  SPEAKER_00: It's having a newborn baby and it never ends.
• 22:34
  SPEAKER_01: You can't go in and get a cup of coffee while you have the baby on your hip.
• 22:38
  SPEAKER_01: Your baby is bigger than you.
• 22:40
  SPEAKER_00: I had to learn how to pick him up, transfer him from wheelchair to toileting to the bed.
• 22:46
  SPEAKER_00: Our kids literally started working out like we got weights in the backyard because
• 22:51
  SPEAKER_00: our kid,
• 22:52
  SPEAKER_00: two of them were like,
• 22:53
  SPEAKER_00: we need to start getting stronger so we could help mom lift dad.
• 22:57
  SPEAKER_00: And I'm by no means like, yes, we talk about it all the time.
• 23:01
  SPEAKER_00: We don't know who they would be without ALS today.
• 23:04
  SPEAKER_00: They would probably be typical teenagers, but they're not.
• 23:09
  SPEAKER_00: And they are really blossoming into these.
• 23:14
  SPEAKER_00: I want to be them when I grow up.
• 23:16
  SPEAKER_01: How beautiful.
• 23:16
  SPEAKER_00: Like they are amazing.
• 23:20
  SPEAKER_00: Yes.
• 23:20
  SPEAKER_00: But they did miss their childhood.
• 23:22
  SPEAKER_00: They did miss that.
• 23:24
  SPEAKER_00: And that's what I fundraise for.
• 23:26
  SPEAKER_00: I fundraise money so we can pay caregivers so they can be kids.
• 23:30
  SPEAKER_00: And so I can go to their games and I can go to their activities and I can bring
• 23:35
  SPEAKER_00: Brian to those things too,
• 23:36
  SPEAKER_00: but I just can't do them alone because then I can't pay attention when I'm at the events.
• 23:41
  SPEAKER_00: So I have to have a caregiver with me.
• 23:44
  SPEAKER_00: I mean,
• 23:45
  SPEAKER_00: I don't have to,
• 23:45
  SPEAKER_00: but I choose to when we can afford it to have them because even a vacation,
• 23:52
  SPEAKER_00: we go as a family of seven,
• 23:54
  SPEAKER_00: but I mean,
• 23:55
  SPEAKER_00: 75% of the time we're working because we're all working for Brian.
• 24:01
  SPEAKER_00: And we don't get to really do those things that you can't do.
• 24:04
  SPEAKER_00: Like we planned a 30 day road trip, which was great.
• 24:07
  SPEAKER_00: This was pre-trade and our whole family went and we did all this stuff.
• 24:13
  SPEAKER_00: But it's like, I had a friend do a similar trip, but her family did it in one week.
• 24:19
  SPEAKER_00: And they did all these things that I'm like, oh, we didn't do that.
• 24:21
  SPEAKER_00: And I was like, oh, that's right.
• 24:23
  SPEAKER_00: Because everything I planned was handicap friendly.
• 24:26
  SPEAKER_00: We didn't ride horses and we didn't go on boats and things like that.
• 24:30
  SPEAKER_00: And it all took a lot longer.
• 24:32
  SPEAKER_00: Yes, yes.
• 24:33
  SPEAKER_00: And you just forget.
• 24:34
  SPEAKER_00: But it's as bad and as ugly as this disease is,
• 24:40
  SPEAKER_00: our family has just come together and made something so ugly,
• 24:45
  SPEAKER_00: so beautiful.
• 24:47
  SPEAKER_00: And sometimes I'm sad that other people don't get to experience this life because
• 24:52
  SPEAKER_00: we live a very slow life.
• 24:54
  SPEAKER_00: slow life.
• 24:56
  SPEAKER_00: I mean,
• 24:56
  SPEAKER_00: for Brian and I to have a conversation,
• 24:58
  SPEAKER_00: it takes a very long time,
• 25:00
  SPEAKER_00: but I just sit there and I listen and I wait.
• 25:03
  SPEAKER_00: Most of the time,
• 25:04
  SPEAKER_00: I already know what he's going to say because we've been married quite a while,
• 25:07
  SPEAKER_00: but we don't talk about fluffy stuff.
• 25:09
  SPEAKER_00: If we're going to take energy to talk, it's real talk.
• 25:13
  SPEAKER_00: And we just both know literally the inside and outside of each other because it's really all we have.
• 25:21
  SPEAKER_00: All we have are words.
• 25:22
  SPEAKER_00: Do we just cherish our time together with our words?
• 25:26
  SPEAKER_00: He's a lot more poetic than I am.
• 25:28
  SPEAKER_00: And so his words are a lot prettier.
• 25:31
  SPEAKER_00: I was definitely a typical wife that I didn't, I raised babies.
• 25:36
  SPEAKER_00: That's what I did.
• 25:37
  SPEAKER_00: I didn't pay bills.
• 25:38
  SPEAKER_00: I didn't know who our plumber was or air conditioner guy or any of those.
• 25:42
  SPEAKER_00: I didn't know any of that.
• 25:44
  SPEAKER_00: And now I know everything and I know how to do it all.
• 25:49
  SPEAKER_00: That was a big learning curve.
• 25:51
  SPEAKER_00: Not that I couldn't do it.
• 25:52
  SPEAKER_00: I just, I didn't have to, why would I do it?
• 25:53
  SPEAKER_00: You know?
• 25:54
  SPEAKER_03: Yeah.
• 25:55
  SPEAKER_00: I mean, we were married at that point for 17 years and he had done it all along.
• 25:58
  SPEAKER_00: So,
• 25:59
  SPEAKER_00: but just adding all of those,
• 26:00
  SPEAKER_00: I mean,
• 26:02
  SPEAKER_00: I don't know what it's like to be a single mom,
• 26:05
  SPEAKER_00: but at the same time,
• 26:06
  SPEAKER_00: I think this is a little bit into the life of a single mom when you're running the
• 26:10
  SPEAKER_00: whole show and it's hard.
• 26:14
  SPEAKER_00: And I look back and I look back at moms that I've known that have been single moms
• 26:19
  SPEAKER_00: and I have a dear friend that her husband passed away unexpectedly and she has four
• 26:23
  SPEAKER_00: little ones and it was actually just a couple months after Brian's diagnosis.
• 26:27
  SPEAKER_00: So we've been journeying this together.
• 26:30
  SPEAKER_00: And it's like,
• 26:31
  SPEAKER_00: she likes to say,
• 26:32
  SPEAKER_00: we're just different fruit,
• 26:33
  SPEAKER_00: but we're in the same basket,
• 26:35
  SPEAKER_00: experiencing everything differently,
• 26:37
  SPEAKER_00: but yet the same.
• 26:38
  SPEAKER_01: You are this extraordinarily capable person who will figure things out, who will make things happen.
• 26:44
  SPEAKER_01: You are going to keep showing up no matter what.
• 26:48
  SPEAKER_01: Any resistance, any obstacles, these are just problems to solve.
• 26:52
  SPEAKER_01: Mm-hmm.
• 26:53
  SPEAKER_01: we're going to get through this.
• 26:55
  SPEAKER_01: There's not like, oh, let's self-doubt and worry ourselves and procrastinate.
• 26:59
  SPEAKER_01: It's let's face this stuff.
• 27:02
  SPEAKER_01: And you are so true to who you are in every one of these situations.
• 27:07
  SPEAKER_01: It would be so easy to just feel completely overwhelmed and succumb to the worry
• 27:14
  SPEAKER_01: and the fear to a degree that you get paralyzed.
• 27:18
  SPEAKER_01: Which is honestly what happens to so many of us when we are faced with giant life altering surprises.
• 27:27
  SPEAKER_01: And so I'm curious how you found your way out of the bed to like get in there and
• 27:35
  SPEAKER_01: face all of this and find your way through.
• 27:37
  SPEAKER_00: I wonder that too.
• 27:40
  SPEAKER_00: Sometimes I use the word personality a lot and the kids hate when I say that.
• 27:46
  SPEAKER_00: They're like, don't say the P word, mom.
• 27:48
  SPEAKER_00: I would say that I don't have a choice, but I think I do.
• 27:52
  SPEAKER_00: When I had my fourth boy, so zero year old, I had a two year old, a three year old and a four year old.
• 28:00
  SPEAKER_00: Just picture that for a minute.
• 28:02
  SPEAKER_03: Oh my gosh.
• 28:04
  SPEAKER_00: It's like your life was training you for this.
• 28:06
  SPEAKER_00: Right.
• 28:07
  SPEAKER_00: So the organization, the planning, all of those things.
• 28:12
  SPEAKER_00: I don't know if that's who I was going to be if I didn't have kids and get married at 19.
• 28:17
  SPEAKER_00: But I did whatever I had to do to really survive and not run away, right?
• 28:25
  SPEAKER_00: And not lay in bed all day.
• 28:26
  SPEAKER_00: I mean, these little people needed me and they needed me high functioning.
• 28:30
  SPEAKER_03: Mm-hmm.
• 28:31
  SPEAKER_00: I have three siblings and he has one sibling.
• 28:34
  SPEAKER_00: And that generation of parents,
• 28:36
  SPEAKER_00: they kind of just raised you all together like as one unit and didn't really,
• 28:40
  SPEAKER_00: or that's my experience.
• 28:42
  SPEAKER_00: And they didn't really raise us as individuals.
• 28:44
  SPEAKER_00: They didn't really,
• 28:45
  SPEAKER_00: they weren't like,
• 28:46
  SPEAKER_00: oh,
• 28:46
  SPEAKER_00: you need to be disciplined this way,
• 28:49
  SPEAKER_00: but your brother needs to be disciplined this way.
• 28:51
  SPEAKER_00: We were just all lumped together, right?
• 28:52
  SPEAKER_00: And we were just raised together.
• 28:54
  SPEAKER_00: And I vowed not to do that.
• 28:55
  SPEAKER_00: And Brian did not want to do that either.
• 28:59
  SPEAKER_00: And so we really took this approach of learning each kid and how they responded and
• 29:05
  SPEAKER_00: how they worked and what they needed,
• 29:07
  SPEAKER_00: which that was exhausting.
• 29:09
  SPEAKER_00: That is why people don't do that.
• 29:11
  SPEAKER_00: It's exhausting.
• 29:13
  SPEAKER_03: Yeah.
• 29:14
  SPEAKER_00: And it takes a lot of thought and a lot of intentionality.
• 29:18
  SPEAKER_00: Starting that long ago with that mentality really helps me move into this season of
• 29:24
  SPEAKER_00: life with a lot of grace because I've already trained myself to be that way.
• 29:29
  SPEAKER_00: If you would see the things I had a MacGyver to get Brian and wheelchairs and
• 29:34
  SPEAKER_00: holding a phone,
• 29:35
  SPEAKER_00: holding a cup,
• 29:35
  SPEAKER_00: holding,
• 29:36
  SPEAKER_00: you know,
• 29:36
  SPEAKER_00: whatever it was so that he could feel like he could still do things.
• 29:43
  SPEAKER_00: I don't know.
• 29:43
  SPEAKER_00: I just, I go in there, I see it.
• 29:47
  SPEAKER_00: And immediately I just, my wheels start spinning and I want to make it happen.
• 29:52
  SPEAKER_00: I want to make it the best experience for whoever it is.
• 29:55
  SPEAKER_00: And at some point it's a good and bad thing, but I do give everything, all that I can give.
• 30:02
  SPEAKER_00: Yeah.
• 30:04
  SPEAKER_00: I just do it.
• 30:04
  SPEAKER_00: I say I don't have an option,
• 30:06
  SPEAKER_00: but I guess at the same time,
• 30:07
  SPEAKER_00: I know plenty of people that if they're depressed,
• 30:10
  SPEAKER_00: they just stay in bed for months.
• 30:11
  SPEAKER_00: And I don't see that as an option for me.
• 30:13
  SPEAKER_00: There's too many people that rely on me.
• 30:16
  SPEAKER_00: And I mean, I do it all for myself too, for my own sanity.
• 30:20
  SPEAKER_00: I'm in charge of too many people and too many things.
• 30:23
  SPEAKER_00: And I have to keep going like for them, you know.
• 30:26
  SPEAKER_01: I believe deeply that the only thing we cannot have too much of is love.
• 30:31
  SPEAKER_01: And that every time we love someone or something else, it just introduces so much complexity.
• 30:37
  SPEAKER_01: There's more risk, there's more loss, there's more fear.
• 30:42
  SPEAKER_01: And yet it's always the trade-off I would make.
• 30:45
  SPEAKER_00: Yeah.
• 30:46
  SPEAKER_00: It's fascinating though,
• 30:47
  SPEAKER_00: going through this disease with Brian,
• 30:51
  SPEAKER_00: the amount of people though that are more withdrawn instead of coming over more,
• 30:58
  SPEAKER_00: hanging out with Brian more.
• 31:00
  SPEAKER_00: It's like you just said,
• 31:01
  SPEAKER_00: it's the fear of loss,
• 31:03
  SPEAKER_00: the fear that he's going to die and the people just go away.
• 31:07
  SPEAKER_00: Yeah.
• 31:07
  SPEAKER_03: Yeah.
• 31:08
  SPEAKER_00: I feel like we are more connected now with,
• 31:11
  SPEAKER_00: this is why we say,
• 31:12
  SPEAKER_00: I don't even know if we would,
• 31:14
  SPEAKER_00: we could take ALS away now,
• 31:16
  SPEAKER_00: but I don't think we would take it away from the past.
• 31:19
  SPEAKER_00: If they wanted to cure it and make Brian a whole person today, yes.
• 31:22
  SPEAKER_00: But what we have learned and experienced from this diagnosis, we would not take that away.
• 31:28
  SPEAKER_00: And it's a weird thing, I think, for people to hear when we say things like that, but
• 31:33
  SPEAKER_00: The community of people that we have now that instead of running from the fear,
• 31:37
  SPEAKER_00: it's a whole new group of people in our lives.
• 31:40
  SPEAKER_00: And it's just been so beautiful.
• 31:43
  SPEAKER_00: I mean, even down to meeting you and ALS has taken down all the walls.
• 31:49
  SPEAKER_00: There are no secrets in our house.
• 31:52
  SPEAKER_00: Our kids know everything.
• 31:54
  SPEAKER_00: Our kids tell us everything.
• 31:56
  SPEAKER_00: We've been able to walk through with them in all of the typical teenage things.
• 32:04
  SPEAKER_00: we're all able just to see life at such a precious state.
• 32:09
  SPEAKER_00: And we don't worry.
• 32:11
  SPEAKER_00: Like I am not worried.
• 32:13
  SPEAKER_00: I say, I always tell my mom, I'm like, mom, you worry enough for me.
• 32:17
  SPEAKER_00: Like I don't even put worry on my plate.
• 32:19
  SPEAKER_00: Like not even one of the things I do.
• 32:21
  SPEAKER_00: I don't worry.
• 32:22
  SPEAKER_00: What a gift.
• 32:23
  SPEAKER_00: Yeah.
• 32:24
  SPEAKER_00: Well, I'm not going to say I don't get stressed out.
• 32:26
  SPEAKER_00: I mean, I definitely, you know, take medicine for that.
• 32:29
  SPEAKER_01: Smart.
• 32:30
  SPEAKER_00: Yes.
• 32:30
  SPEAKER_00: But the stress is, it's nothing long-term.
• 32:35
  SPEAKER_00: Our kids come in, they talk to Brian, they tell us about their day.
• 32:38
  SPEAKER_00: And it's just, that's just like not even typical, especially in teenage boys.
• 32:43
  SPEAKER_00: Our oldest, he's a freshman in college and
• 32:46
  SPEAKER_00: He was so stressed out because he wanted to go away at some point, pre-ALS probably.
• 32:52
  SPEAKER_00: He's an artist.
• 32:52
  SPEAKER_00: He thought about going to SCAD.
• 32:54
  SPEAKER_00: But he's like, I'm the oldest brother.
• 32:55
  SPEAKER_00: What am I going to do if one of my brothers get a flat tire and I'm in Atlanta?
• 33:01
  SPEAKER_00: Like, I want to be there for them because I had it.
• 33:05
  SPEAKER_00: I had dad do it for me and now they don't.
• 33:07
  SPEAKER_00: Of course, you don't want your kids to alter their life for things like this.
• 33:12
  SPEAKER_00: But...
• 33:13
  SPEAKER_00: The way that I worked it through with him was let's look at life in two years.
• 33:18
  SPEAKER_00: Let's just look in short-term increments.
• 33:20
  SPEAKER_00: You can stay home at university here, do your two years here.
• 33:23
  SPEAKER_00: If dad is steady and doing fine and you feel like your heart can handle being away from home,
• 33:30
  SPEAKER_00: then go.
• 33:31
  SPEAKER_00: And so that's what he did.
• 33:34
  SPEAKER_00: His first year, he's stayed at home.
• 33:36
  SPEAKER_00: He's at the University of New Orleans.
• 33:38
  SPEAKER_00: And I made him move out of the house though, still.
• 33:41
  SPEAKER_00: Go live on campus.
• 33:43
  SPEAKER_00: It's two miles away from our house.
• 33:46
  SPEAKER_00: But when he's at his apartment,
• 33:49
  SPEAKER_00: he's not hands-on because when a kid walks in the door of this house,
• 33:53
  SPEAKER_00: you're hands-on.
• 33:54
  SPEAKER_00: It's just comes with the territory of being home and they have chores.
• 33:59
  SPEAKER_00: But if I need to go on a phone call or something, they have to go sit with dad.
• 34:03
  SPEAKER_00: There's no complaints.
• 34:05
  SPEAKER_00: It's just what we do here.
• 34:06
  SPEAKER_00: And so now for our second kid,
• 34:08
  SPEAKER_00: Jonah,
• 34:09
  SPEAKER_00: he is a senior in high school and he feels okay leaving because Brian's at a good place.
• 34:15
  SPEAKER_00: Whereas with Micah, Brian wasn't even trached yet.
• 34:18
  SPEAKER_00: And so Jonah is going all the way to Pennsylvania and he's going to Villanova and he's fine with that.
• 34:24
  SPEAKER_00: And we're fine with that.
• 34:25
  SPEAKER_00: We're happy for it.
• 34:26
  SPEAKER_00: We're already planning.
• 34:27
  SPEAKER_00: How are we going to get Brian there?
• 34:29
  SPEAKER_00: He's going to go see him, go see the university.
• 34:32
  SPEAKER_00: We just do everything intentional here.
• 34:35
  SPEAKER_00: We're on purpose.
• 34:36
  SPEAKER_00: Our kids give us so much grace because we can't be at everything.
• 34:41
  SPEAKER_00: Brian cannot be at everything.
• 34:43
  SPEAKER_00: And they're okay with that.
• 34:45
  SPEAKER_00: And my kids are so aware of me and they're so, they know like, mom, this weekend, I don't have anything.
• 34:54
  SPEAKER_00: Do you want to go make plans with friends?
• 34:56
  SPEAKER_00: I'll stay home with dad because I don't generally have help on the weekends.
• 35:00
  SPEAKER_00: When I talk about our family, it sounds like a storybook and it sounds impossible.
• 35:05
  SPEAKER_00: And I think where I'm getting now with humanity is I'm so sad for people.
• 35:11
  SPEAKER_00: This should be typical.
• 35:12
  SPEAKER_00: And we would love to help people get there.
• 35:16
  Yeah.
• 35:16
  SPEAKER_00: And that's our story to tell.
• 35:18
  SPEAKER_00: And you don't have to have ALS to get there.
• 35:20
  SPEAKER_01: The other thing that I think is really important to your perspective and the thing
• 35:26
  SPEAKER_01: that ends up getting in the way for most of us navigating change in life,
• 35:32
  SPEAKER_01: you're willing to accept change.
• 35:35
  SPEAKER_01: Over and over throughout this conversation,
• 35:37
  SPEAKER_01: you've said things like,
• 35:38
  SPEAKER_01: it may not look like we expected,
• 35:41
  SPEAKER_01: or this is how we do it here.
• 35:43
  SPEAKER_01: And what is that saying?
• 35:44
  SPEAKER_01: This isn't the way any of us dreamed life would look.
• 35:48
  SPEAKER_01: And it is the ability to accept and grow within what is that allows you to not
• 35:59
  SPEAKER_01: while away your precious moments together with worry,
• 36:03
  SPEAKER_01: but to be present.
• 36:05
  SPEAKER_01: and to create new beauty within the constraints of what it is that never could have
• 36:12
  SPEAKER_01: existed outside of it.
• 36:14
  SPEAKER_01: Thank you for demonstrating for all of us what it looks like to live in acceptance.
• 36:22
  SPEAKER_01: And I think maybe that's the light I saw off in the darkness that
• 36:26
  SPEAKER_01: Uplifters, I'm going to try to convince Christy to come join us in New York in May.
• 36:32
  SPEAKER_01: So maybe you'll get to meet her there.
• 36:34
  SPEAKER_01: For all of you listening,
• 36:35
  SPEAKER_01: I hope you'll join me in supporting the Jeansons in the life that they are living
• 36:43
  SPEAKER_01: and modeling.
• 36:43
  SPEAKER_01: There are some really great opportunities to financially support them in this big
• 36:50
  SPEAKER_01: life that they are choosing to create against so much adversity.
• 36:54
  SPEAKER_01: And it'll feel really good to know that what you're giving is contributing just so much love.
• 37:03
  SPEAKER_01: Thank you for listening to the Uplifters podcast.
• 37:06
  SPEAKER_01: If you're getting a boost from these episodes,
• 37:09
  SPEAKER_01: please share them with the Uplifters in your life and then join us in conversation
• 37:15
  SPEAKER_01: over at theuplifterspodcast.com.
• 37:19
  SPEAKER_01: Head over to Spotify,
• 37:20
  SPEAKER_01: Apple Podcasts,
• 37:21
  SPEAKER_01: or wherever you get your podcasts and like,
• 37:25
  SPEAKER_01: follow,
• 37:25
  SPEAKER_01: and rate our show.
• 37:27
  SPEAKER_01: It'll really help us connect with more uplifters and it'll ensure you never miss
• 37:32
  SPEAKER_01: one of these beautiful stories.
• 37:36
  SPEAKER_02: Big love.
• 37:38
  SPEAKER_02: Painted water, sunshine, with rosemary and thyme.
• 37:43
  SPEAKER_02: Dwell in the perplexing, though you find it vexing.
• 37:48
  SPEAKER_02: Toss a star and hover, be your own best lover.
• 37:52
  SPEAKER_02: Relish in a new prime, plant a tree in springtime.
• 37:57
  SPEAKER_02: Dance with idle hindsight, bring the sun to twilight.
• 38:03
  SPEAKER_02: Lift you up, why?
• 38:06
  SPEAKER_03: Lift you up.
• 38:07
  SPEAKER_03: Lift you up.
• 38:08
  SPEAKER_03: Lift you up.
• 38:12
  SPEAKER_03: Lift you up.
• 38:13
  SPEAKER_03: Lift you up.
• 38:16
  SPEAKER_03: Lift you up.
• 38:35
  SPEAKER_03: Lift you up.
• 38:36
  SPEAKER_03: Beautiful.
• 38:38
  SPEAKER_03: I cried.
• 38:40
  SPEAKER_03: It's that little thing you did with your voice.
• 38:49
  SPEAKER_03: Right, in the pre-chorus, right?
• 38:54
  SPEAKER_03: I was like... Mommy, stop crying.
• 38:56
  SPEAKER_03: You're disturbing the peach.