Ep. 73 Living with Courage and Hope with Christa Cagnon

[00:00:06] [SPEAKER_00]: I'm Michele Simms and this is The Beauty in the Mess.

[00:00:09] [SPEAKER_00]: A community where people who crave a shift in mindset, personal growth and connections

[00:00:14] [SPEAKER_00]: to like-minded people come together to start rewriting their stories.

[00:00:18] [SPEAKER_00]: During gaging, honest and insightful conversations, this show will help you embrace the mess

[00:00:23] [SPEAKER_00]: to recognize the meanings and the lessons that holds and discover its hidden treasures

[00:00:27] [SPEAKER_00]: to help you start making a mindset shift.

[00:00:30] [SPEAKER_00]: Let's listen, learn and reclaim what we were meant to be.

[00:00:34] [SPEAKER_00]: Hi, friend. Welcome to The Beauty in the Mess.

[00:00:38] [SPEAKER_00]: For this episode, I'm thrilled to welcome Chris Aganio to the show.

[00:00:42] [SPEAKER_00]: Chris says a woman who wears many hats.

[00:00:45] [SPEAKER_00]: Being blessed with a daughter with a terminal illness as shaped a trajectory of her career

[00:00:50] [SPEAKER_00]: and her passions and her life.

[00:00:52] [SPEAKER_00]: Her daughter is her world and she's on a mission to bring awareness and find a cure for Jordan's

[00:00:57] [SPEAKER_00]: disease.

[00:00:58] [SPEAKER_00]: She is an advocate and knows the importance of her voice.

[00:01:01] [SPEAKER_00]: She's also been an entrepreneur and a business owner for the past 20 years and just recently

[00:01:06] [SPEAKER_00]: stepped into the nonprofit space as a brand manager.

[00:01:10] [SPEAKER_00]: It's Chris does a goal to create community and bring people together.

[00:01:15] [SPEAKER_00]: She shares her experience with the pain and grief that comes with being a caregiver

[00:01:18] [SPEAKER_00]: to help others know that they are not alone.

[00:01:22] [SPEAKER_00]: She is excited that she's reached the portion of her life where she's able to give back and help others.

[00:01:27] [SPEAKER_00]: Hi, I'm Michelle Sims your host.

[00:01:30] [SPEAKER_00]: I'm just a regular person who along with my family have had our share of

[00:01:33] [SPEAKER_00]: messes that we too have had to overcome.

[00:01:37] [SPEAKER_00]: Along the way, I got curious as to how others get through their messes and even trying

[00:01:41] [SPEAKER_00]: over them.

[00:01:42] [SPEAKER_00]: Maybe there's a better way, a faster way.

[00:01:45] [SPEAKER_00]: Maybe we can accelerate our journeys by learning from someone else.

[00:01:49] [SPEAKER_00]: That started my pursuit.

[00:01:51] [SPEAKER_00]: I think we can all learn from each other through the sharing of our experiences, lessons,

[00:01:56] [SPEAKER_00]: to join me for episode 73 of the beauty in the mess called Living with Courage and Hope

[00:02:03] [SPEAKER_00]: Christus Journey as a mom to a child with a terminal illness.

[00:02:07] [SPEAKER_00]: So without further ado, let's dive right into today's conversation.

[00:02:12] [SPEAKER_00]: Hi, Christa.

[00:02:13] [SPEAKER_00]: Welcome to the beauty in the mess.

[00:02:14] [SPEAKER_00]: I'm so glad to have you with me today.

[00:02:17] [SPEAKER_00]: Thank you for having me.

[00:02:18] [SPEAKER_00]: Absolutely.

[00:02:19] [SPEAKER_00]: Now I know you're the founder of

[00:02:22] [SPEAKER_00]: I'm going to butcher your last name.

[00:02:24] [SPEAKER_00]: I'm sorry.

[00:02:25] [SPEAKER_00]: Going with the can you?

[00:02:27] [SPEAKER_00]: Yep, that's great.

[00:02:28] [SPEAKER_00]: Yeah, I know you're also a rare disease advocate, but before we get deeper into those things,

[00:02:33] [SPEAKER_00]: I was wondering if you would tell us at least part of your journey what you're willing to share

[00:02:38] [SPEAKER_00]: like what life has been like so far and what led you to this.

[00:02:43] [SPEAKER_02]: Sure about eight years ago now.

[00:02:46] [SPEAKER_02]: Well, even before that.

[00:02:47] [SPEAKER_02]: So I need it to be true to myself.

[00:02:49] [SPEAKER_02]: I always ever wanted to do with to be a mom.

[00:02:51] [SPEAKER_02]: That was like my mangle and life.

[00:02:52] [SPEAKER_02]: And so I had three beautiful children.

[00:02:55] [SPEAKER_02]: And at the age of four and a half, my daughter, my middle daughter,

[00:03:00] [SPEAKER_02]: was diagnosed with a condition called giant actinonal neuropathy.

[00:03:03] [SPEAKER_02]: So it's called GAN for short, GAN.

[00:03:07] [SPEAKER_02]: And this completely upheaved early.

[00:03:09] [SPEAKER_02]: It is a terminal genetic condition that progresses over time

[00:03:13] [SPEAKER_02]: that attacks the nervous system and progresses over time.

[00:03:15] [SPEAKER_02]: By the time she is in her late teens, she will be the equivalent of a quadriplegic and very

[00:03:22] [SPEAKER_02]: susceptible to thicknesses.

[00:03:24] [SPEAKER_02]: And so most kids diagnosed with GAN don't make it pass.

[00:03:28] [SPEAKER_02]: And yeah, and so you can imagine that that for sure changed our lives.

[00:03:33] [SPEAKER_02]: And it's been that's been eight years.

[00:03:35] [SPEAKER_02]: So it's been quite the journey since then.

[00:03:37] [SPEAKER_02]: There's been many stages to this.

[00:03:39] [SPEAKER_02]: And I'm sure we'll talk and get into that.

[00:03:41] [SPEAKER_02]: But it really, raising Jordan has really shaped what our lives look like.

[00:03:47] [SPEAKER_02]: Now and we make all of our choices now based on on this,

[00:03:52] [SPEAKER_02]: on what we have been dealt in this life.

[00:03:55] [SPEAKER_00]: Yeah, I can't even imagine.

[00:03:57] [SPEAKER_00]: I'm assuming with the diagnosis there was a grieving period or an angry period

[00:04:02] [SPEAKER_00]: or both.

[00:04:03] [SPEAKER_00]: I mean, how do you even learn to accept that?

[00:04:06] [SPEAKER_00]: Or do you accept it?

[00:04:07] [SPEAKER_00]: Do you just keep fighting it?

[00:04:12] [SPEAKER_02]: Yeah, I've learned to that.

[00:04:14] [SPEAKER_02]: I agree by being in action.

[00:04:16] [SPEAKER_02]: There's kind of different type of engravers.

[00:04:17] [SPEAKER_02]: Some people are really like in their emotions and then other people get to work.

[00:04:21] [SPEAKER_02]: And the first few years were very hard because I thought that I could power through it.

[00:04:26] [SPEAKER_02]: Like I thought that I just kept okay, what are we doing next?

[00:04:29] [SPEAKER_02]: Where are we going next?

[00:04:30] [SPEAKER_02]: We went and spent half a year in Bethesda, Maryland.

[00:04:34] [SPEAKER_02]: We're in Canada getting her gene therapy.

[00:04:36] [SPEAKER_02]: And it was just always what next and what happened in that time though is that

[00:04:42] [SPEAKER_02]: because I was just trying to keep myself busy and trying to keep moving.

[00:04:46] [SPEAKER_02]: I really didn't give myself enough of the grace to actually properly grieve.

[00:04:51] [SPEAKER_02]: And so those first like three and four years were really difficult.

[00:04:54] [SPEAKER_02]: Because I would go go go and then my body would just be like nope.

[00:04:58] [SPEAKER_02]: I'm sorry, we can't do this anymore.

[00:05:00] [SPEAKER_02]: And then I would be not by choice left that or not able to even feel like I go

[00:05:07] [SPEAKER_02]: I didn't able to function for some time.

[00:05:08] [SPEAKER_02]: Like, we can at a time.

[00:05:10] [SPEAKER_02]: And as I have grown in this, I realized that that's totally normal.

[00:05:15] [SPEAKER_02]: But back then and the reason why I talk about it.

[00:05:17] [SPEAKER_02]: So openly is back then I felt like I was failing.

[00:05:21] [SPEAKER_02]: I felt like I was lazy.

[00:05:22] [SPEAKER_02]: Like I wasn't that I just was failing at life.

[00:05:25] [SPEAKER_02]: When really it was just all of those emotion.

[00:05:29] [SPEAKER_02]: Those normal emotions when you have such a terrible diagnosis,

[00:05:33] [SPEAKER_02]: those normal emotions that just need it to be felt and just given some time.

[00:05:37] [SPEAKER_02]: I still am I would say that I'm still in grief.

[00:05:40] [SPEAKER_02]: I think it will probably never go away.

[00:05:42] [SPEAKER_02]: There's a term we call and piss the pitoury grief.

[00:05:44] [SPEAKER_02]: And so it kind of always lives there.

[00:05:47] [SPEAKER_02]: And it's funny because I think the anger actually came later.

[00:05:50] [SPEAKER_02]: I think I just went through that and were like eight years then it.

[00:05:53] [SPEAKER_00]: Oh wow.

[00:05:54] [SPEAKER_02]: So it's ever evolved.

[00:05:56] [SPEAKER_01]: I think for sure.

[00:05:57] [SPEAKER_00]: Yeah like I said, I can't even imagine.

[00:05:59] [SPEAKER_00]: We dealt with very serious illnesses in our family.

[00:06:03] [SPEAKER_00]: And I know like at one period my husband's had a lot of medical issues.

[00:06:07] [SPEAKER_00]: My daughter's had a lot, one of my daughters.

[00:06:09] [SPEAKER_00]: And the husband and my youngest daughter had to have brain surgery within a year of each other.

[00:06:14] [SPEAKER_00]: I mean it was closer than a year.

[00:06:17] [SPEAKER_00]: But in that interim, I was a basket case.

[00:06:19] [SPEAKER_00]: I mean if somebody said how are you, I just broke down.

[00:06:22] [SPEAKER_00]: I mean I just couldn't contain all the emotions.

[00:06:24] [SPEAKER_00]: So I can't even imagine how you get the strengths to do what you're doing.

[00:06:30] [SPEAKER_00]: So you're amazing in my book.

[00:06:33] [SPEAKER_00]: So for sure.

[00:06:34] [SPEAKER_02]: Well it's an interesting thing living with a diagnosis like this because

[00:06:39] [SPEAKER_02]: yes Jordan has been diagnosed.

[00:06:40] [SPEAKER_02]: Yes she'd been given the diagnosis that tells us that we think we know what's coming in the future,

[00:06:44] [SPEAKER_02]: right? But really none of us are promised tomorrow.

[00:06:47] [SPEAKER_02]: And we live now with the diagnosis for we've already been living with it for eight years and

[00:06:52] [SPEAKER_02]: probably like another five to eight to go right.

[00:06:54] [SPEAKER_02]: And so it's such a long time living with this somebody just told you that this is what's going

[00:06:58] [SPEAKER_02]: to happen. You know what I mean? Or like a book or what's your analysis tell you that this is what's

[00:07:02] [SPEAKER_02]: going to happen and but you have so much life to live in the middle of that, right?

[00:07:06] [SPEAKER_02]: It's not it's not like my mum was diagnosed with terminal cancer and there was this like

[00:07:10] [SPEAKER_02]: short window of time where we kind of pod life.

[00:07:13] [SPEAKER_02]: We all came around her and spent time and we did all the things she wanted to do.

[00:07:17] [SPEAKER_02]: But this is like a long time.

[00:07:18] [SPEAKER_02]: My other kids still need to have a traditional life and we still need to live.

[00:07:23] [SPEAKER_02]: Oh absolutely it's such a balancing.

[00:07:26] [SPEAKER_00]: Yeah my one child has had a lot of medical problems and that's one thing

[00:07:30] [SPEAKER_00]: that I always worried about because she requires so much attention

[00:07:34] [SPEAKER_00]: that I always felt guilty because I have four children. I always felt guilty about the other three,

[00:07:39] [SPEAKER_00]: but you just got out of try to balance it as best you can and give yourself some grace in the process.

[00:07:47] [SPEAKER_00]: I'm just wondering, no this is impacted you all greatly but has this changed how you all

[00:07:53] [SPEAKER_00]: do life or at least you and your husband that you take nothing for granted or very little for

[00:07:58] [SPEAKER_00]: granted as much as humanly possible? And you just cherish everything or how does that play out for

[00:08:05] [SPEAKER_02]: you? Yeah it's literally changed everything for us. Sometimes there's a lot of pressure with the whole

[00:08:10] [SPEAKER_02]: like I've no time to waste. There's a lot of pressure in that. We're at some of the best moments

[00:08:14] [SPEAKER_02]: of living life is like hanging on the couch watching media movie night with your kids or you know what

[00:08:19] [SPEAKER_02]: I mean like so we still have life in and amongst all of that but for sure it has completely changed

[00:08:24] [SPEAKER_02]: the way that we see most things. We make our choices now based on it is actually what we want.

[00:08:29] [SPEAKER_02]: Is this what we want to be spending our time doing and what we want to be doing or is this just

[00:08:34] [SPEAKER_02]: kind of like what seems as a societal norm right? We make some choices like that. It also

[00:08:42] [SPEAKER_02]: it also has like I said it has changed every aspect of our life because we really have in a

[00:08:49] [SPEAKER_02]: weird way we really embraced what's happening with Jordan and it is almost like the sound so

[00:08:54] [SPEAKER_02]: weird saying it a lot but it's almost like the focus of our family. Like we know she has a short

[00:08:59] [SPEAKER_02]: lifespan and so going with the gang of us was came from that in that we could still find a way to

[00:09:08] [SPEAKER_02]: make sure that we made space for hope and fun and adventure and Jordan kind of brings us to that

[00:09:17] [SPEAKER_02]: stuff. It's weird it's like she opens the doors for us to share that part of our lives with everybody

[00:09:24] [SPEAKER_02]: and having Jordan I feel like almost makes us live more live more than we would have not knowing

[00:09:32] [SPEAKER_02]: these things of course now that I say it all up that makes sense because we know that time is limited so we're

[00:09:36] [SPEAKER_02]: like doing all the adventures and all the things that we can we like try to jam as much as we can

[00:09:42] [SPEAKER_00]: into the time that we do have. Is she aware of her condition or is she not aware I mean

[00:09:51] [SPEAKER_00]: as she blissfully happy how do you manage that part of it? Yeah she's blissfully happy she's happy

[00:09:57] [SPEAKER_02]: she comes to every appointment and we talk openly in front of her and so she knows it all

[00:10:03] [SPEAKER_02]: I think that she knows as much as a 13-year-old can understand even her feelings who

[00:10:09] [SPEAKER_02]: she has an older brother and even he still talks about like her future and what she'll do

[00:10:13] [SPEAKER_02]: with this age or that age so even I think it's just hard to wrap your head around. I think even

[00:10:18] [SPEAKER_02]: as adult when we care for somebody close to us and they might have that I know it's like that

[00:10:24] [SPEAKER_02]: I think even it's hard for us to wrap our heads around it you know what I mean? Yeah definitely yeah

[00:10:29] [SPEAKER_00]: so when people approach you when they find out your daughter's condition I mean as there are

[00:10:36] [SPEAKER_00]: certain things they should say or shouldn't say or I know that there's got to be pet peeves

[00:10:41] [SPEAKER_00]: is what people I might have even done it I don't know but you know what I'm saying is there

[00:10:47] [SPEAKER_00]: a way you can teach us as to what you shouldn't say or what you should say or should you just

[00:10:53] [SPEAKER_02]: embrace it all or. So we are very open on our journey so we may not be

[00:10:59] [SPEAKER_02]: the best ones to ask this stuff because we're not easily offended that's correct. And even

[00:11:06] [SPEAKER_02]: I think even less than even I make mistake I remember very distinctly when Jordan first got into a

[00:11:12] [SPEAKER_02]: wheelchair because she progressed as a child and all the milestones she did all the things she walked

[00:11:16] [SPEAKER_02]: she did all of it and then she her condition took away that ability so she went to a walker

[00:11:21] [SPEAKER_02]: and then eventually to a wheelchair and I remember when she got her wheelchair saying

[00:11:25] [SPEAKER_02]: oh no she's wheelchair bound and somebody was like you can do that. I was like oh I didn't know

[00:11:33] [SPEAKER_02]: oh why can't you say that? That has a negative connotation yeah we're not easily offended

[00:11:40] [SPEAKER_02]: because we've made them mistakes too it's all a learning curve but I think that it's almost if you

[00:11:44] [SPEAKER_02]: watch kids around Jordan they're very like open and just honestly like inquisitive and I think

[00:11:51] [SPEAKER_02]: that's just the best way to come into it like it's way better for like when a kid comes over and

[00:11:56] [SPEAKER_02]: and pie that's a really cool chair how did you get it what happened that is so much more

[00:12:01] [SPEAKER_02]: well received then somebody who just stands off to the distance and you can tell that they're like

[00:12:05] [SPEAKER_02]: scary. So that's us though we have no problem with people approach us we don't mind talking about

[00:12:13] [SPEAKER_00]: talking about it all I think people get so afraid of doing or saying the wrong thing that they

[00:12:18] [SPEAKER_00]: do nothing and like you said that's more awkward I think than the longer on but it's just kind of

[00:12:24] [SPEAKER_00]: human nature you're like oh I don't know yeah I don't know what I can say what I can't say

[00:12:29] [SPEAKER_00]: especially today's world it's kind of crazy yeah so what are her dreams at this point what is she

[00:12:37] [SPEAKER_00]: hoping to do oh gosh want a loaded question we do not have to list them all but I mean what are some

[00:12:46] [SPEAKER_00]: does she go to school or does she homeschool or how are you how do you handle that she goes to school

[00:12:52] [SPEAKER_02]: she loves going to school we don't put a huge we don't put a huge pressure on my academic

[00:12:55] [SPEAKER_02]: of it but she just loves being with people and the minute that it stops being fun we'll make

[00:13:00] [SPEAKER_02]: you different choice from there but the reason I said it such a loaded question is I don't know if

[00:13:04] [SPEAKER_02]: you knew this or not but Jordan actually had the dream it do it live so she's very clear on her dreams

[00:13:09] [SPEAKER_02]: of what the things that she wants to do and it started I think with 15 or 20 things on it and she

[00:13:17] [SPEAKER_02]: has been doubled it in the last little one oh all the other things are like she wants to visit

[00:13:22] [SPEAKER_02]: New York he wants to go there's a restaurant here with the fondue so she wants to visit melting

[00:13:27] [SPEAKER_02]: parts she wants to try indoor sky diving oh that would be fun yeah and then she got them

[00:13:34] [SPEAKER_00]: big gold and aspiration on the list so when the reason I asked about school is I was just wondering

[00:13:39] [SPEAKER_00]: if she's like dreams are going to prom or does she even talk about that like every girl loves

[00:13:44] [SPEAKER_00]: to dress up and a lot of girls like to dress up be friendly yeah so that's interesting because

[00:13:51] [SPEAKER_02]: when she so I recently had vision boarding event and she wanted to make one also and she put

[00:13:57] [SPEAKER_02]: things like that on her vision board like a picture of a guy and I'll go like oh what is this

[00:14:01] [SPEAKER_02]: and she's like oh boy friend I thought okay and then she has 13 and then like a house and a dog

[00:14:08] [SPEAKER_02]: and all that stuff but and so she has those on her vision board but on her I think what's so

[00:14:14] [SPEAKER_02]: magic about her dream it do at least is that there's things the her dream it do at least is like a

[00:14:19] [SPEAKER_02]: now list right and though it helps her focus on like things that we can make happen like now and focus

[00:14:25] [SPEAKER_02]: on those things right and snow there's no boyfriends or anything like that on that list

[00:14:32] [SPEAKER_00]: I have three girls and that's all they would talk about for years was the prom yeah

[00:14:37] [SPEAKER_00]: everybody had to go to prom and everybody had yeah so I just wondered if she had that same

[00:14:42] [SPEAKER_00]: aspirations so what do you think you would like people to understand about

[00:14:48] [SPEAKER_00]: families with terminally ill children like I have a friend that's moved away but I've seen on

[00:14:54] [SPEAKER_00]: Facebook that their granddaughter is terminally ill and I'm just wondering like how do you even

[00:15:01] [SPEAKER_00]: help and not make things worse you know what I'm saying he's just focused on a loss

[00:15:06] [SPEAKER_02]: like as a like a few as a person on the outside yeah okay so two pieces of advice

[00:15:11] [SPEAKER_02]: so for the friend that is going through it so the person that's going through it the

[00:15:14] [SPEAKER_02]: family that are going through it I think that the number one thing that I did for myself was to find

[00:15:19] [SPEAKER_02]: a community well I actually created it if I couldn't find it was to create a community of people

[00:15:24] [SPEAKER_02]: that were going through the same thing so that's really amazing now through like Facebook and

[00:15:27] [SPEAKER_02]: like different social media platforms you can reach out to people like that because as soon as you

[00:15:32] [SPEAKER_02]: find those people that you can talk with really honestly and openly about what's happening

[00:15:36] [SPEAKER_02]: and what the future holds without having to fill to yourself or for somebody else to benefit

[00:15:43] [SPEAKER_02]: it really is good for the heart and the soul to be able to talk with people that fully get it

[00:15:50] [SPEAKER_02]: that advice and then for someone as a friend or a family who sees this happening but best thing

[00:15:55] [SPEAKER_02]: you can do is just day there because what happened and day there and just day in their circle because

[00:16:00] [SPEAKER_01]: oh I'm like getting emotional I don't know I'm sorry because what happened is that life gets

[00:16:09] [SPEAKER_01]: really hard and it's hard for people to watch that happen sometimes it's hard enough for us on

[00:16:14] [SPEAKER_01]: the inside where it's happening but it's also hard on the people on the outside watching it happen

[00:16:19] [SPEAKER_01]: and so sometimes people fall away because they just don't know what to do we don't know how to support

[00:16:25] [SPEAKER_01]: you and it's just hard to watch somebody go through so much pain and the best thing you can do is

[00:16:30] [SPEAKER_01]: just stay there and be there for them in whatever that looks like just call them bring them coffee

[00:16:34] [SPEAKER_01]: just remain a friend is really all that you need to do yeah that's beautiful advice yeah

[00:16:41] [SPEAKER_00]: alright so I think sometimes we over complicate things yeah like I said I with just the

[00:16:49] [SPEAKER_00]: things and it's not where near the level of yours but just what we've had to deal with I get so emotional

[00:16:55] [SPEAKER_00]: people know me they know I mean I can't stop the emotions sometimes so I fully get it

[00:17:02] [SPEAKER_00]: but yeah thank you like I was gonna say I think we over complicate things just because we're so afraid

[00:17:07] [SPEAKER_00]: we're gonna do the wrong thing and then we stop ourselves from doing anything and that's the wrong thing

[00:17:13] [SPEAKER_00]: but yeah what's the name of your group I don't know if you said it oh so that is for us

[00:17:19] [SPEAKER_02]: like locally because we do meet local so that's what I was gonna have yeah but if anybody is dealing with

[00:17:27] [SPEAKER_02]: this situation carrying for somebody terminal or just wants to listen to somebody else talk about

[00:17:33] [SPEAKER_02]: their grief I do talk about this a lot on our TikTok account I'm going with the game's on TikTok

[00:17:38] [SPEAKER_02]: because I really don't want anybody to feel the way that I felt in those first couple years like

[00:17:45] [SPEAKER_02]: I just didn't like I said I just didn't even know what was happening and like I said I felt

[00:17:48] [SPEAKER_02]: kind of a little bit like a failure in those years and now that I understand with the grief

[00:17:52] [SPEAKER_02]: and all those feelings are now I just don't want anybody to feel like that but I want

[00:17:57] [SPEAKER_00]: anybody to have to feel like that yeah so do you think part of it I know in my situation

[00:18:06] [SPEAKER_00]: because we've had so much going on a lot for a lot of the time that you kind of self-isolate

[00:18:13] [SPEAKER_00]: it's not just people fall off but I think part of it has been my fault that I also get so consumed

[00:18:18] [SPEAKER_00]: what's going on you know what I mean that I feel bad sometimes I'm not the friend that I should

[00:18:23] [SPEAKER_00]: be all the time because I'm dealing with what I view as huge moments in life for my family and

[00:18:30] [SPEAKER_00]: trying to cope with that I feel like sometimes the people fall away and I'm not blaming anything

[00:18:36] [SPEAKER_00]: on you I'm just saying do we sometimes self-isolate because we're just so involved in our own

[00:18:42] [SPEAKER_02]: problems or issues yeah for sure and especially I noticed you that as Jordan within a wheelchair

[00:18:48] [SPEAKER_02]: became harder to do the traditional things with friends like we can't just go to somebody's house

[00:18:54] [SPEAKER_02]: when they're having a get together because we just can't get in those so there's two sides of that

[00:18:58] [SPEAKER_02]: what is welcome I think is that the friends just still keep inviting because there will be a point

[00:19:03] [SPEAKER_02]: where your pain isn't so great that you will eventually be able to say yes so those friends

[00:19:09] [SPEAKER_02]: that have been there since the beginning who just kept inviting us now we're able to say yes because

[00:19:14] [SPEAKER_02]: now I'm in a healthier place and I found ways you know what I mean to join our friends again

[00:19:21] [SPEAKER_02]: right but it was really important those friends who just never stop acting hey you want to come

[00:19:27] [SPEAKER_02]: we're going to do this you want to come and even if I had to say no they did never stop acting

[00:19:30] [SPEAKER_02]: but at least the invite was always there but I do think that we do self-isolate also there

[00:19:36] [SPEAKER_02]: is that piece of it and I think that's why it's so important to find the people who understand

[00:19:41] [SPEAKER_02]: it being you're going through because the reason personally sometimes that I self-isolated

[00:19:46] [SPEAKER_02]: is because with numbers started to talk about something I felt like I was in such an unhealthy place

[00:19:52] [SPEAKER_02]: with my grease that they would be talking about what's your five year plan people on

[00:19:57] [SPEAKER_02]: plan for the future and I would be like I would just go people ask about your five year plan

[00:20:03] [SPEAKER_01]: is and you're talking business or okay I am an entrepreneur at heart okay so we're talking

[00:20:09] [SPEAKER_00]: I was second with the family so they're surprisingly yeah like when you're talking about I don't

[00:20:17] [SPEAKER_02]: know even if somebody's talking about their kid and soccer or complaining about some normal

[00:20:21] [SPEAKER_02]: life things I was hurting so bad that it was hard for me to partake in those regular conversations

[00:20:28] [SPEAKER_02]: but be like oh you have no idea what trouble is or and so when I found a place to channel that

[00:20:33] [SPEAKER_02]: to talk to people who are going to do the same thing and say this is really hard it helps me heal

[00:20:38] [SPEAKER_02]: so that now I can be part of regular conversations without feeling in my own feelings.

[00:20:44] [SPEAKER_00]: Yeah I think that's huge like I said that's one thing that we never did looking in retrospect

[00:20:50] [SPEAKER_00]: because my husband's a cancer survivor several times and all these different things going on

[00:20:56] [SPEAKER_00]: that we should have gotten into support groups we never did and I think it would have changed

[00:21:02] [SPEAKER_00]: us in a positive way had we done that so I think that's one of the most crucial things

[00:21:07] [SPEAKER_00]: whether someone's in your situation or any situation if you can find people that are going

[00:21:12] [SPEAKER_00]: through the same thing you help each other get through it. It's not an easy step to take though I

[00:21:17] [SPEAKER_02]: spent many years many of those first years being I don't belong there building on my people

[00:21:22] [SPEAKER_02]: we're different we're not gonna be like that so I'm falling are you saying after you started your

[00:21:28] [SPEAKER_00]: group you had these feelings or before you started it okay you know like before I only started

[00:21:34] [SPEAKER_02]: group like two and a half years ago in the beginning when Jordan was first diagnosed they always

[00:21:39] [SPEAKER_02]: have on Facebook there's a ton of in every area of like special needs groups and parents who are

[00:21:44] [SPEAKER_02]: raising medical cancer special needs kids and I just really pulled the door to that I was like

[00:21:50] [SPEAKER_02]: that's not us we're just way different than that that won't be like us and I really thought it

[00:21:55] [SPEAKER_00]: for those first few years. Yeah and I joined some of the groups but I am always just an observer

[00:22:02] [SPEAKER_00]: you know what I mean yeah I would just listen to what the other parents are saying or doing it

[00:22:07] [SPEAKER_00]: but I never do been it. So I had read I believe that you started a clothing line. Yeah

[00:22:15] [SPEAKER_02]: would you want to tell us about that? Yeah well that was more Jordan so that was more Jordan

[00:22:21] [SPEAKER_02]: okay that was her dream to do that. Yeah I helped there but yeah it's kind of a

[00:22:32] [SPEAKER_02]: state and so they have statements like I am amazing I'm brave I am wild and they they came to fruition

[00:22:41] [SPEAKER_02]: because from very young Jordan was always being hoax prodded in doctors offices and everybody is

[00:22:48] [SPEAKER_02]: always very encouraging oh you're so brave Jordan and you're so amazing and all those things

[00:22:53] [SPEAKER_02]: and tint a thought that everybody should be able to feel like that and embrace those things that make

[00:22:58] [SPEAKER_02]: so special and so there's sweatshirts and t-shirts and stickers and a journal and yeah so as

[00:23:03] [SPEAKER_00]: as she watch what's happening with the business I mean as she involved a little bit in that or oh yeah

[00:23:10] [SPEAKER_00]: she's involved in it all. So does she help design the shirts? How do you pick out the designs?

[00:23:18] [SPEAKER_02]: Yep yep and her and her and the girls at school they like make the list of the different

[00:23:25] [SPEAKER_02]: affirmations that we should put on there and yeah that's pretty awesome I think.

[00:23:32] [SPEAKER_00]: Is there anything else you definitely want to make sure that our listeners here about Jordan's

[00:23:38] [SPEAKER_02]: journey your journey any of it? Yeah yeah actually there is one thing which Jordan just recently

[00:23:44] [SPEAKER_02]: every time she gets interviewed or she does like a video she's been asked because I don't know

[00:23:49] [SPEAKER_02]: if you know this but she's a little budding model and actress she's got a little career happenings

[00:23:53] [SPEAKER_02]: whatever she's asked what would you like people to know about you or what could they take away from

[00:23:58] [SPEAKER_02]: you is that she said that even though she's different and even though she's different

[00:24:04] [SPEAKER_02]: able she's still able to do everything that everybody else is able to do just in a different way

[00:24:09] [SPEAKER_02]: and I really love that message because I think that's what we're trying to live with the family

[00:24:13] [SPEAKER_02]: to that it might look different how we do things but we can still do it all we can still manage

[00:24:19] [SPEAKER_02]: to live life to the fullest and do all the things. I did see pictures of your family and she's

[00:24:26] [SPEAKER_00]: gorgeous she really is and the whole family I mean you have a beautiful family but thank you.

[00:24:32] [SPEAKER_00]: I can see why she's a model. Very pretty. If any of your listeners go to look at any of the

[00:24:39] [SPEAKER_02]: socials and that here that she has that makes her very recognizable and also gorgeous it's

[00:24:44] [SPEAKER_02]: actually part of her condition and all the kids that have again have that stinky curly super curly

[00:24:50] [SPEAKER_00]: hair. I'm wondering about that I wasn't sure if I should ask but her hair was so different from

[00:24:56] [SPEAKER_00]: everybody else as I wondered if it was part of her condition because but it's gorgeous but yeah she's

[00:25:01] [SPEAKER_00]: got the curls. I'm sure they had their girls a love plan with those curls too they want to

[00:25:14] [SPEAKER_00]: been very informative and I love your mission if you want to tell us more about

[00:25:18] [SPEAKER_00]: about your mission what you want to accomplish. Yeah so I should just have that like in a

[00:25:25] [SPEAKER_00]: quick 30 second bigger bitch. I don't mean to fit you on this but I know you're an advocate.

[00:25:35] [SPEAKER_02]: Yeah I would say that our main mission point is to bring awareness to rare disease and specifically

[00:25:41] [SPEAKER_02]: disease, giant axel and their opathy and my mission as Jordan's mission would be to show everybody

[00:25:47] [SPEAKER_02]: in the world that you can do everything you put your mind to just in a different way. And my

[00:25:52] [SPEAKER_02]: mission statement would be that I am really an advocate for grief which is so weird but

[00:26:02] [SPEAKER_02]: in certain circumstances there's really in all circumstances there's really something about

[00:26:08] [SPEAKER_02]: embracing and feeling the grief and I think we all at some point we do all at some point

[00:26:13] [SPEAKER_02]: on our life. So I would really like to be there as an example for people who have to

[00:26:23] [SPEAKER_02]: ride in grief for extended periods of time. Yeah that's really helpful. I'm just not alone.

[00:26:30] [SPEAKER_00]: Yeah and it's not just grieving what you're going through but it's also grieving

[00:26:36] [SPEAKER_00]: what you won't have possibly. Yeah yeah it's not a traditional grief for sure it's not

[00:26:41] [SPEAKER_02]: you went to a funeral and we lost somebody and we like I said we've all experienced that at some

[00:26:47] [SPEAKER_02]: point the anti-the-beatery grief yes it's like a grieving of things that will never be. We grieve

[00:26:52] [SPEAKER_02]: that she will never be married or won't maybe have the prom. You're evil things then also

[00:26:58] [SPEAKER_02]: when conditions are progressive you grieve every single lot of function. I'm sure the

[00:27:04] [SPEAKER_02]: like when she went to her wheelchair it got a lot you know I mean there was grief involved with

[00:27:07] [SPEAKER_02]: that and you just creeped up too when you're just not even expecting. I mean I know my

[00:27:15] [SPEAKER_00]: son I completely different level and I'm not trying to compare it on the equal level at all but

[00:27:19] [SPEAKER_00]: I know everything my daughter went through whether it was brain surgery or the feeding tube or

[00:27:25] [SPEAKER_00]: the colon two agreed it because A were altering her body and B it was a big change for our family.

[00:27:32] [SPEAKER_00]: So what I guess I'm trying to say is I understand as much as I possibly can at least what you're

[00:27:37] [SPEAKER_00]: talking about as far as the grief because you do and yeah as a parent I don't know how you couldn't

[00:27:44] [SPEAKER_00]: you want all these things for your child you want them to have everything that every other child

[00:27:49] [SPEAKER_00]: has or you've perceived they have at least. Yeah yeah so if people want to reach out to you follow

[00:27:58] [SPEAKER_00]: you get in touch with you how do they what's the best place. So on every platform and even

[00:28:05] [SPEAKER_02]: the website it's all the same it's going with the and then our last name gangions so G A G and O and S

[00:28:16] [SPEAKER_00]: I was gonna say we need to spell that because they'll never get that from the pronunciation.

[00:28:22] [SPEAKER_02]: Yeah so that's everywhere Facebook Instagram TikTok and our website as well it's all the

[00:28:27] [SPEAKER_00]: okay that's awesome and I'll definitely put that in the show notes too. I was just curious

[00:28:32] [SPEAKER_00]: and that this is looking probably way forward but is there possibility of a book someday do you think

[00:28:38] [SPEAKER_00]: you'll write a book about this experience this journey? I don't know that's an interesting

[00:28:43] [SPEAKER_02]: question because I do have it on my potential maybe list one day and it's funny because Jordan actually

[00:28:50] [SPEAKER_02]: has it on her dream but do you at least that she would be illustrated until children's book?

[00:28:56] [SPEAKER_02]: Oh wow that there would be like an illustration with her curly hair and her wheelchair so

[00:29:00] [SPEAKER_02]: maybe we'll just put that out to the universe on it's vodka. Yeah that's your next collaboration I

[00:29:08] [SPEAKER_00]: already see it. Yeah I mean she I'm sure she would love the process yeah someone is writing her

[00:29:19] [SPEAKER_02]: into chapter of a book that's on disability so I think that's in the works right now but yeah on

[00:29:24] [SPEAKER_02]: her list she would like to be she would like to be featured in a book so we'll see what we'll see

[00:29:28] [SPEAKER_00]: what comes. So did she want to write a book like for other children in the same situation she's

[00:29:33] [SPEAKER_02]: in or has she? No she just wants a children's story of this really cool awesome girl but like

[00:29:39] [SPEAKER_02]: the girl it illustrated as Jordan with the curly hair and the wheelchair. I was gonna say because I

[00:29:47] [SPEAKER_00]: think I know a woman who's in the process of writing some children's books so I could find out maybe

[00:29:54] [SPEAKER_00]: she needs a character like an inspiration. Yeah I was gonna say if you two wanted to do it I

[00:30:00] [SPEAKER_00]: could find out who her publisher is but yeah well definitely ask her that's pretty neat idea I

[00:30:07] [SPEAKER_00]: already see it I'm already manifesting it. Well I yeah I thank you and if there's anything else you

[00:30:15] [SPEAKER_00]: want to make sure we hear of this let me know and I'm gonna follow your journey and I hope everyone

[00:30:22] [SPEAKER_00]: else follows along oh I've ever as one other thing I wanted to ask if someone wants to help

[00:30:27] [SPEAKER_00]: Jordan or help children like Jordan or how do they do that or is that on your site? Yeah on

[00:30:34] [SPEAKER_02]: our socials there's like the link tree link and all the links are in there on how to donate to

[00:30:40] [SPEAKER_02]: Jordan's by the list or donate to you finding it here for again as well as on our website all of the

[00:30:46] [SPEAKER_00]: links are there as well. Okay awesome yeah well thank you so much I know your time is valuable and I

[00:30:51] [SPEAKER_00]: appreciate having you. Yeah thanks for having absolutely. As we wrap up today's episode I hope

[00:30:58] [SPEAKER_00]: Chris to sharing her knowledge experience in wisdom has helped you in some way. I thought it was

[00:31:03] [SPEAKER_00]: interesting how Chris to spoke about the different ways people can grieve. However one of the main

[00:31:09] [SPEAKER_00]: things that I gathered from our conversation was how you can help support someone like Chris to enter

[00:31:14] [SPEAKER_00]: family who is dealing with one of life's toughest situations just staying nearby and continually

[00:31:21] [SPEAKER_00]: letting them know that you're there and he want to have them around when they're ready. Seems like

[00:31:27] [SPEAKER_00]: it meant the world to Chris to another thing that really stood out to me is how important community is

[00:31:33] [SPEAKER_00]: for people who are grieving and struggling for anyone really just knowing that someone's going through

[00:31:39] [SPEAKER_00]: what you're going through. I think sometimes we forget how much the small things in life really mean.

[00:31:46] [SPEAKER_00]: So what stood out to you? I would love to hear from you as always I hope this episode helps at

[00:31:51] [SPEAKER_00]: least one person and with that I hope you have a blessed week my friend.

[00:32:00] [SPEAKER_00]: Thank you for listening to the beauty in the mess. If you enjoyed what you heard please share it with a

[00:32:05] [SPEAKER_00]: friend and if you haven't already please subscribe, rate and review this podcast on your favorite

[00:32:10] [SPEAKER_00]: pod player. If you have any questions or comments any topic I did you'd like to hear about

[00:32:15] [SPEAKER_00]: or you think you would be a great guest on the show you can reach me directly at the beauty in the

[00:32:20] [SPEAKER_00]: mess.com. Thanks for listening.