Transformative Travels, the Recipe for Joy and More with Creator of Accessible Adventures Kristy Cook

Kristy Cook, the heart behind Accessible Adventures, dedicated wife and mother of four, joins us to share her family's story, illuminating the joy and beauty found in life's unexpected paths. Embracing each day with a philosophy of "I'm glad I tried it" over "I wish I had," Kristy's narrative is a beacon of positivity for parents who have yet to step outside society's assumptions of life raising a child with special needs.

Take a seat at our "campfire conversation", where Kristy recounts adventures that have not only united her family but also provided healing and personal growth. From wheelchair-accessible escapades to the creation of an online community that offers a lifeline of information and support, Accessible Adventures is her family's answer to the scarcity of resources they once faced. With tales of their scenic travels and the impact on their family dynamics, listeners will discover just how transformative new environments and experiences can be for everyone involved.

Navigating the emotional currents of quality-of-life decisions, Kristy offers insights into the challenges and triumphs they've faced with their son Robbie's medical treatments. She opens a window into the careful balance between preserving a child's spirit and the efficacy of medical interventions, showing how trusting parental instincts can lead to moments of pure joy. As we wrap up, we're reminded of the importance of supporting each other—just as Kristy and her husband, TJ, have done through their journey. Listen in and be inspired by the strength of a family focused on living a full life, no matter the odds.

Accessible Adventures: https://accessibleadventures.net/index.html#/
Instagram: https://www.instagram.com/accessible.adventures/?hl=en
Accessible Adventures LinkTree: https://linktr.ee/Accessible.adventures

Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

To get more personal support, connect with us directly at: CharlottesHopeFoundation.org
Email: Contact@CharlottesHopeFoundation.org
Facebook: Charlotte's Hope Foundation
Instagram: CharlottesHopeFoundationInc

Transcript

Speaker 2: 0:13

Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while empowered by hope, is here for you, though we wish you didn't know this heartache. We're so glad you found us, so together we can walk this journey in hope.

Speaker 3: 0:35

Hello and welcome to the empowered by hope podcast. It's Ashlyn Thompson here and, as you all know, emily has been out for a little bit dealing with some medical challenges of her own, and I know you all are probably no doubt actually missing her as much as I'm missing her, but God has been really great in allowing me to feature some really super powerhouse guests, and the person I'm about to bring on here is absolutely no exception to that. In fact, I've been actively stalking this person for quite some time on social media, because when I came across her account I'm going to let her tell you about it I just went down the Alice in Wonderland rabbit hole of just living her adventures through her social posts, you know to begin with, but the person that you're about to meet is somebody who truly understands what it means to live life, and not only live life with a child who has medical complexities, but she really understands the value and the gift that comes with embracing everything life has to offer, and she was just telling me before we started she would so much rather live her life thinking I'm so glad I did this rather than I wish I had done this, and that, to me, is going to be an underlying theme for this conversation, because I'm already inspired. I'm fired up. This woman is not only beautiful on the outside, her heart just radiates. I know we don't do a YouTube podcast yet, but she's sitting in front of me glowing right now and I'm going to stop being so mysterious without her name.

Speaker 3: 2:23

So what I want to do is introduce everybody to Christy Cook from Accessible Adventures. I'm guessing a lot of you are already familiar with their amazing online presence. Christy, thank you for coming here. Welcome to Empowered by Hope. How are you tonight?

Speaker 4: 2:40

I am doing great. We had a great day full of adventure and I'm excited to be here. I'm excited to make some new connections and hopefully spread some hope.

Speaker 3: 2:50

I think it's. I have no doubt that that's going to happen. If there is anything that's going to be accomplished, it is. We're going to be steering some people to Hope Road very well tonight, I have no doubt. And the reason I keep saying night is because you're in Colorado, correct, correct? Okay, so we're in Indiana, so we have that two hour time difference, and so it worked out just like working moms do. Right, we fit it around our bedtime, we fit it around, you know, morning time, daytime, so we're getting together at night, and so, if I sound a little loopy, apologies now, but we're going to let you do most of the talking, christy. So, speaking of having a great day, why don't you tell everybody what you did? Because I know it's a really big deal to do what you guys got to do today. So let's, let's start it with that.

Speaker 4: 3:35

Yeah, so we are local to well, pretty close to Denver, colorado, and something just came back a sort of way. So Casabonida just came back to Denver and reopened. It's not even fully open yet, so at this point you have to submit an email. There's a lottery. We waited months to get an email saying that we can make our tickets and then we had to say, okay, here are our tickets, can we do this? Is this accessible? Is this something that our son is going to like? And those are always the questions that run through your mind when you're trying to plan any sort of outing right With a medically complex child. So I contacted them and absolutely they said that we could, and it was so much fun. They had lifts and ramps to get to everywhere. There's a cool diving show, so they dive off of the top of these big rocks into a pool of water and there is an accessible like splash zone, so to say, right at the front where they're diving, right in front of where Robbie was sitting.

Speaker 4: 4:40

I had no idea they had a magic show and a puppet show. Our baby laughed hysterically through the whole magic show. I have no idea if she even knew what she was laughing at, because she is way too young to understand. She thought it was very funny, so we thought, okay, well, so maybe two hours there and I think like four hours later we were getting our faces painted and that is why she said I was glowing because I'm glowing with a snake painted across my face right now.

Speaker 4: 5:04

But we had a great day and I think that sometimes the places that you're like I just don't know if this is kid friendly, let alone wheelchair friendly those are the best places, the best places. It's been our experience that when we reach out and we ask for more information, most places are very welcoming and the whole time we were there, every time a staff member saw him, they interacted, they came immediately over, they just gravitated towards our son, robbie. Robbie is nine years old. He has LGS, so LGS is a rare form of epilepsy. He does have daily seizures and some pretty big global developmental delays. So cognitively he functions more at like a six month old level and he uses a wheelchair. But he has a love of adventure and a love of life.

Speaker 3: 5:52

Okay, so you just introduced us to Robbie, and then you also do. You have a baby, and I know you have an older daughter. Tell us about your other children.

Speaker 4: 6:01

Yeah, so we have four. Our oldest is officially out of the house, he is 23. He is my son, but he's been with me since he was nine. And then we have our almost 11 year old, and then Robbie is nine and then a just turned one year old. Yeah, we just like to start over and over and over again. We like kids.

Speaker 3: 6:24

I guess you are. That's amazing. I have a almost seven year old and then Emery is two and a half and I love children too, but I love adopting kids through other families and then, like, I'm all about children but my ADD brain is not good with the starting over. My children are lucky. They're doing as well as they are with as many things as I forget and misplace, and my husband and I are very good match because he's a very organized one and I'm the one that reminds him we can have fun in life. So we work through that.

Speaker 3: 7:02

But you started to segue perfectly talking about how the places that sometimes people are most scared to go to can actually be the ones that provide the greatest experiences. And that's what I gathered from your account and I think gravitated to you so quickly, was, if I'm being honest, I have truthfully at times shied away from taking my kids on certain trips, adventures, experiences, because I've been scared about them being child friendly or about it being able to be an experience that's not so enveloped in stress that we lose the ability to enjoy it. And you have completely challenged how I look at things and I feel so much more invigorated and excited to just lean into the mess and let that be a part of the joyful experience. Like it needs it to be perfect. Nobody's. We're not making a movie, so when we first started, I did.

Speaker 4: 8:08

If I'm being honest, I am a type A planner. I map everything out and I thought, okay, here's our perfect trip. We're at this location, I have this amazing accessible hike, it's going to be in a great view and this is what we're going to do. We had there was no accessible adventures. This is just me as a mom Okay, so this is just me as a mom. And Robbie's first trip with his camper that he got from Make a Wish. So we have all this plan.

Speaker 4: 8:31

We get to this trailhead, I turn around and Robbie snoring and he fell asleep and I immediately, like, the panic sets in and I look at my husband and I'm like, well, what are we going to do? You know, like, because when we wake him up, sometimes it causes more seizures. I don't know if I want to wake him up and he was like no, he's tired, we'll just let him sleep. I was like you just want to sit in the parking lot and he was like no, we can just take turns. Like it's less than a mile walk. You know like one of us will sit here and like we packed lunch, so like I'll eat lunch and then you go walk and then, if our daughter wants to walk twice, she can. She wants to walk once, she can. If it's not worth walking and seeing you, let me know, and then we'll just kind of take turns.

Speaker 4: 9:09

And it was. It's the simplicity that comes from the male mind. For me, I was just it blew, it blew me away. I was like, oh, that's so simple, that is such a simple option and it worked and we do it everywhere we go. So I tell everyone to prepare right. So map out where you're going to go, know what you can do in an area and I don't put time limits on anything. So when I map out an area, I say this is where we're going to be on a map. These are all of the cool things that we can do that are accessible in this area. So we know, hey, if we're over by this, this is over here too, in national parks, in cities, whatever it may be. And then we just kind of fly by the seat of our pants with that.

Speaker 4: 9:55

I think that my husband is more of the not a planner versus me being a planner. So it's, it mixes very well that way where I can just say we have three days here, you know, if we're going up in this direction. Here's the other stuff that we can hit. We're going to have these Napping. Then that's not a catastrophe, because he got sleep and that's what his brain needs right now, and we're going to take turns experiencing it.

Speaker 4: 10:20

And there are certain things that, like, my husband is a fisherman, so if it's by water, I let him go. I just immediately am like you can go, look and see if there's fish in the water, because I know that he wants to do that. And then if it's something that is, you know, up my alley, then he'll be like oh, that's definitely you. Like, you know, if it's the visitor center store, then it's me. So we've just kind of learned to take turns. And then when Robbie wakes up, we'll be like okay, cool, he's awake, he's ready to go now, and then we'll head towards something else that looks cool for him. So there are some things where, even on our page, like I will highlight them and be like this is this great accessible trail? Robbie's not on it, he's over there napping, but he went to half of the other things throughout the day and what he needed in that moment was a little nap.

Speaker 4: 11:08

So I think that packing some patience with you and flexibility, you know. Lower the expectations, expect nothing, appreciate everything. It's always a quote that I've leaned into. It really helps when you're trying to travel and adventure with kids and the times that I've been the most stressed it's always gone really well and I don't know if that's just me being lucky so far. But you know, I was really stressed about this off-roading we were going to do and it went so great. It went so great and the kids had an absolute blast and everyone was happy the whole time. And I think that that's just one of those things where, if you let your anxiety and your stress hold you back, it's going to hold your whole family back. Right.

Speaker 3: 11:53

I love that you helped us understand that you guys are living your life for your whole family. I think sometimes it's easy to feel like we have to build our lives around everything that's only okay for our child, that you know that has some, you know has the medical complexities, or you know the special needs, and I love how you're showing like yeah, I mean he has, we have to adjust for him, but we still live our lives just as fully, like we're not pulling our lives back, we're experiencing it together and it's okay if he's not you know, seeing every single sunrise or sunset or every mountain peak or every trail that we're on. We're still together as a family and we're still making these memories and doing things that you love, your husband loves, your other children love and obviously Robbie loves. That's very empowering to me to not just build your life around.

Speaker 3: 12:54

You're not making your life smaller at all.

Speaker 4: 12:58

Absolutely so. When we plan a trip, it is extremely important to me to have something for everyone. So every time I plan a trip, I will sit down with my kids and our oldest son. He traveled with us, too, for a whole summer. So the year that he traveled with us, I sat them down and I said what do you guys want to do? And this is where we're going, because I'm picking where we're going. It's a road trip. Okay, this is the loop. But like, what type of stuff do you want to do on this loop?

Speaker 4: 13:27

And our daughter loves animals and she was like, if there are like any zoos or I can pet animals or feed animals or see them in the wild, that's the kind of stuff I want to do. That's great, I can definitely do that. So we went to a drive-thru zoo and we went to a place where you can feed deer by hand, and she just loved it. And then, with Robbie, we just know that Robbie loves water, he loves swimming. So we rented a boat for a day and went swimming in a lake and we made sure we stayed at like campgrounds that had pools or hot tubs that kids were allowed in. And then same thing for myself and my husband Like we jokingly call him our nature fairy because he really likes to just take things in. So when we went to Crater Lake he was really more amazed by Crater Lake than everyone else was. But everyone just patiently, was like if you want to stop at every single stop around this lake for that, you know, 10 degree different view and take it in, then that's what we're doing today because that was his day.

Speaker 4: 14:22

So I think the funniest thing that's ever happened is we went to the Grand Canyon.

Speaker 4: 14:26

The Grand Canyon when you think of it, you know everyone wants to see the Grand Canyon. I thought we brought our daughter there and we went through the first little loop and I will admit that most of it looks roughly the same. So she saw that first little loop and she thought that's really cool. And then about an hour and a half later, when we're like two or three stops in, she looks at me and she's like are we done with the Grand Canyon yet? And I was like you know, this is mommy and daddy's day and this is what we really want to do and it's accessible for Robbie, but tomorrow we're going to go to a zoo and she was like, okay, and she was in for the rest of the day. So I think just making sure that you're including everyone keeps the kids kind of on their toes and knowing like tomorrow is my day. So I'm going to go through it today and look at the rim of this canyon for as long as you want me to.

Speaker 3: 15:16

And I love how thank you for pointing out that you also make sure that there's something for your husband, there's something for you, because I think, when we are, I think it's natural as parents, I think it's natural as moms, as women, sometimes to think, oh, I'm happy if everybody else is happy. And what's your husband's name? It's TJ TJ. How has your, your relationship evolved since you all began this accessible adventures life together?

Speaker 4: 15:50

To be quite honest, we've had so much more time, so much more time together and then time experiencing things that neither of us had. So our kids are being raised in nature and traveling and hiking and going camping I mean not on the ground, but they're going camping and a camper and we were not. So there was a huge learning curve for us. Together we work really well as a team, so our kids will finish it off anytime someone's like teamwork makes that.

Speaker 4: 16:23

So what else will you all dream work? Because that's usually means I need help with something and then people will come and kind of chime in and help. But I feel like it's brought us closer and I think not only just experiencing it together and being in nature, but watching our kids. So when you see the world through your kids eyes, when they see something for the first time, when they experience something for the first time, it is so powerful and it is so healing, even for our own, like for your inner child, to see that. And my husband came from a place where he didn't have experiences like that growing up, so it's been very healing for him especially and for me to just kind of watch it all unfold.

Speaker 3: 17:05

Right, you know that's beautiful. I should probably back up a little bit because I'm just thinking everybody should know what accessible adventures is your account and follow it, and we will be dropping all of that information to make it easy for everybody to start checking out, because it's kind of like a daily dose of sunshine and hope and joy. For those who are not familiar with your account yet, give us some background of how this actually came to be, because it's not just a family account. I mean, this has become a way of life for you all.

Speaker 4: 17:36

Yeah, so I think that we got to start from the beginning. Robbie got a camper from Make-A-Wish so we waited up until two years ago Robbie was seven. He's been qualified since he was two. We just couldn't think of anything that Robbie would really want. He doesn't like theme parks, things like that, so we've just kind of waited to see if there was anything that we thought would really spark his interest. We moved to Colorado and we started going on like local hikes in our regular sandals and tennis shoes and not knowing what we were doing, and he just loved being outside, just loved it, and we would go for like road trips just in our truck and just drive for three hours for the day and go see the mountains, and he would have the windows down, put his hands out and he just had so much joy. So we talked to his doctor and she referred him for Make-A-Wish Fast forward. Robbie has a camper.

Speaker 4: 18:28

We planned our first trip and I realized how much it entails to plan an accessible, fun, inclusive trip to travel with a child that has this amount of disabilities. And I am a very type A person, I am a planned out. I printed an entire binder. I still do this. I make a map and I circle every location and I like roughly how many minutes away it is from other locations. It's a whole thing. So we got back and everyone was like, don't go too far on your first trip. We did not listen. We're, you know, pedal to the metal kind of feel. So they're like go two hours from your house or 30 days from your house, you're going to forget something. I, we went on a like 10 day trip, hit three national parks and it went, seeming like it just it went perfect. Nothing that happened. We saw so many accessible things. We saw things we didn't even plan on seeing and we had this whole binder and it worked so well. And we got home and I was like man, we're just like done and there all this like information is here and I started thinking about everywhere we had been, and even the Grand Canyon, which I keep bringing it up because it's one of the most accessible parks. But there was no one there and that was Robbie's first trip. I saw no one else in a wheelchair.

Speaker 4: 19:46

And the more that we started thinking about it, I talked to my husband. I said, you know, maybe I should like make a blog. So you know, people Googled it and then they looked it would be like, oh, these are accessible things to do. The first place we went was Moab, utah Arches National Park, canyonlands, dead Horse National Park, their state park. There was a plethora of parks in that area. There's a lot of accessibility there and I just kept thinking, like this can't just like die off and end here.

Speaker 4: 20:15

We had already been reaching out to and following some full-time RV families to ask questions about where we could go, so I was like maybe I'll just like start an Instagram and then you know, I can share, like hey, here's my blog, because, like, it's kind of hard to like get traffic to a blog if you're not anywhere else. And it was just kind of that. We weren't posting super often, nobody wanted to be an influencer, and then we had one video. It's actually the video that I posted within the last few days, so you might be familiar my husband is carrying our son on his back in front of a waterfall and it talks about how it is my love language that he does this active service for our family Without any complaints, without any hesitations.

Speaker 4: 20:55

He is just always ready to ride and wanting to bring Robbie with us, and Robbie is 70 pounds, so it is physically a lot on both of our bodies, but his especially, and this video went to 10 million people and all of a sudden we had a community, we had an audience, we had all these medical families that were like, well, where do you want to go next and how do we do this?

Speaker 4: 21:18

And just looking for resources. So we decided to kind of be the person that we needed to see when we were starting out. When we first got Robbie's diagnosis, we all I saw was kind of doom and gloom and you know, if he has epilepsy and you can't control it, this is just. There was no joy out there. I didn't see anyone that had a life that felt like it was still inspired and full of hope and really living. So we decided to start sharing his joy and see where it would take us. And it's taken us pretty far and turned into a whole adventure and a business. We actually work with tourism boards now and help them bring awareness for things that are inclusive in their areas and then know what to revamp to become more accessible. So advocating on the back end while spreading awareness and joy in the front end, it's honestly been pretty magical, yeah.

Speaker 3: 22:17

I'm like so amazed and so overwhelmed with gratitude when people find themselves on this path and we share it. And we share it because I've learned through this journey that when we share our stories and our experiences, there's no greater gift to others and there's no better way to help one another and truthfully help ourselves. I know that so much of my healing has come from sharing the hardships that I've overcome. I haven't done a blog yet, but you know I was laughing when you said that. People said, oh, don't go very far for your first trip, and I want to commend you on the fact that you did, because that's such a perfect example of what we're always telling people. Don't let other people tell you what you should do. Like, even if to yourself it sounds a little crazy, it's okay. Like trust yourselves, live your life for yourself, for your family. You're not living it for anybody else.

Speaker 3: 23:14

Our first big family adventure was going to another country for my daughter to have surgery and we left, you know, went overseas for six weeks and I am not a type A personality but I attempted to be one leading up to the trip and I way overplanned and way underestimated what recovery was going to look like for my daughter.

Speaker 3: 23:36

So our plans did change a lot, but unaware, I wasn't aware that I did it. But I guess I did pack a lot of patience and a lot of flexibility because you know, there were a lot of things that were hard but at the same time we had some of the most incredible experiences. And when people looked at me and told me that I was crazy for planning to travel around England after her surgery until we were cleared to come home, I was like why not? Why wouldn't we try? And did we have to cancel half the places we planned to go to? We certainly did. Do I still have a lot of Airbnb credits left to use? I do. I do because it turned out that getting far from London without a car which I did eventually bite the bullet and learn to drive on the other side of the road because it was just necessary you know there were a lot of hiccups but at the same time those were just the flavor and the salsa to the trip Right.

Speaker 3: 24:32

Those created a lot of memories, the changes. And my son, every now and then, who is sex? You know he had just turned gosh, yeah, he was. He had just turned sex when we went over there. And he still, every now and then, loves to tell me hey, mom, remember when I saw Big Ben before everybody else and you didn't believe me that it was Big Ben and you know I mean it's.

Speaker 3: 24:53

I think that story will be something we talk about forever, truthfully, and the fact that he knew what Parliament was. I was like, wow, I'm very impressed. I guess those books were really helpful that we read before we came over here and but people thought we were absolutely crazy and it is by far the most incredible experience of my life so far. I look forward to many more and encouraging others to do that. So I love how you're painting this picture for us of what life has become and what it's capable of, and we love to shine a light on that through, empowered by Hope, and we always try to make an effort to help people understand when we use the word hope, we're not talking about the light at the end of the tunnel.

Speaker 3: 25:43

We're not talking about a perfect life where there's a cure and everything is smooth sailing and life is now typical, normal, etc. When we talk about hope, we're referring to a mindset, a hope that living with a mindset of hope meaning I have hope that we can figure out how to go on adventures as a family. I have enough hope to propel me to take risks because I know it's worth it for our family, and it's okay that our experience doesn't look like others, and from what I could tell, I feel like your experiences are a lot better than a lot of other people's and there's so much to learn from them. But what I would love to hear from you as well is what was life like before you guys started this, because I know you said it's been a couple years, right. What was life like before that?

Speaker 4: 26:35

Yeah. So to be quite honest, the first five years of Robbie's life were really hard. They were really dark. There wasn't a lot of hope. I think in the beginning there was.

Speaker 4: 26:47

But it was this he had infantile spasms as what it started as, and when you look up infantile spasms as you know, every new mom with a new diagnosis will do every parent, they're going to Google. Your child could either be perfectly fine and they'll go off to college where they have massive disabilities and they can never walk and they can never talk. And if you get control of it right away, the odds are better. This is just the science of it. And the longer that we went and the more treatments that he failed, we started to realize that you know, we might not get control of this for him. And I think when we first started, my husband and I were both. You know we're in that type A research. If we get the best doctor and we get the right medication, we can fix this. We fix this for him. He's not going to have to deal with this forever.

Speaker 4: 27:37

This is just a chapter. This is not his book and we never really left the chapter and it kept on for years. He had brain surgery. They cut his brain in half. It's called a corpus callus atomy, because his seizures were so bad that he was requiring rescue meds every day and like turning blue and losing oxygen. He tried every type of medication, every diet, every oil I mean anything that was really out there. We finally got to a point where he aged out of infantile spasms and the seizures changed a bit to drop seizures which were easier to control with meds and by easier control, like instead of 30 a day he has one or two. But we realized honestly, I think COVID was a blessing for us and I think no one might agree with me on this, but Robbie had been in therapy three times a week for six years.

Speaker 4: 28:31

He was living in therapy and I just kept thinking to myself like all of his childhood memories are therapy and we try to do vacation once a year, my husband's working 50, 60 hours a week and over time we're a one income family. This is just so hard. Covid happened. My husband started working from home, everyone started working from home, and when TJ started working from home, his and Robbie's bond just started to grow more and more and him helping like I physically started to feel better because I had issues with my arm and things that had happened from being a caregiver for so long, you know, putting in all those hours while my husband was gone.

Speaker 4: 29:14

And my friend had moved to Colorado with her husband at the time and she was talking to me about you know how there are Medicaid waivers in the state of Colorado and he would have access to Medicaid because our insurance was just fighting us with everything.

Speaker 4: 29:32

And not only that, but one of us could be a paid caregiver for our son and we could have a two income household again. So everyone thought we were crazy and I like this because I tell my kids constantly if you don't say it out loud, your dream and think that's really crazy, then you're probably not dreaming big enough. So we had our dream house in Florida, a beautiful home, a huge pool that we built for Robbie because he liked the water, all of our friends and family, and we sat and we talked and we were, like you know, for the long run, for our little, immediately immediate family unit. We need something more than this and we need help for Robbie because at that point everyone was just giving up his team in Florida. His doctors, his neurologist was like what do you want to do next? I don't really know. That is never what you want to hear.

Speaker 4: 30:30

No we've been through some other ones locally, so we literally put our house for sale by owner. We sold our home, we bought a home in Colorado over like a Facebook video chat in the realtor I'm not even kidding Sight unseen, we've packed up everything that we could, had a moving company come and take it, and then we towed my car behind his truck and we drove straight through because at that point, like Robbie was so medically fragile and COVID was so bad that we didn't want to like stay in hotels and risked a smooch of 36 hours because of all the stops and went straight from Florida to Colorado to our new home that was sitting here waiting for us.

Speaker 3: 31:15

That you had not seen until you showed up and it was yours.

Speaker 4: 31:20

We had closed on but had not seen.

Speaker 3: 31:23

And no one just like yes, I don't know why I feel compelled to like just fist pump in the air for you because like that is what being a superhero is right there, like that is taking risks, leaps of faith, being willing to do anything for your family. I mean my gosh. Like that's what courage is.

Speaker 4: 31:44

It was breaking the mold. We were stuck and we were drowning and we got a taste of what it felt like to have him at home and we were like, oh well, what if you know, we were there and then we could have two incomes or we could one of us could work from home, and it just we can't do this long term. I can't take care of him. Once he's the size of my husband, he's six foot one and 200 pounds. So I'm like you know, we've got to figure something out. So my family was very supportive. I can't say the same about everyone, but my mom was like here are some really thick sweatpants and a new jacket and some fuzzy socks. Yeah right.

Speaker 3: 32:27

Because you're talking about Florida to Colorado. Now I will say this that at least I love how people from Colorado always say yeah, but we don't have the humidity, so our cold is not as cold as other places. It's really not. It's so not.

Speaker 4: 32:41

And I laugh because I thought I don't know. Coming from Florida, when you think Colorado, people thought we were moving to like Antarctica. We still think that that's where we live. It really the snow melts off in like a day here. It's not even that serious. My mom is from Michigan. She comes here and she's like, okay, I was wrong. I'm like it's only up the map, guys. But we got here and we were just like, oh my gosh, we don't even know if we can really get this child on this Medicaid waiver. We don't know anything, but we have plans and I have paperwork and my doctor's written. He'll help anybody with anything. Robbie's doctor in Florida, you know. If you need anything, if you need records, you let me know and I will help you. Please help this family is literally the line, the last line. Please help this family. They need help.

Speaker 3: 33:25

So we got everything to that doctor, who I'm glad that they showed up for you that way at that time.

Speaker 4: 33:31

They. They were he. He was amazing. And it was like the only one on our team that I was like, oh, I don't know what I'm going to do without you. This is going to be scary.

Speaker 4: 33:39

But we got here and we met his new pediatrician and she was just amazing and was like, absolutely yes, he, definitely you need help, you guys need to have this. And I was like this is so crazy because, I don't know, maybe it's just me, I have anxiety. But I literally thought I'm going in with all these printed papers it's a new doctor, I'm asking them to sign off on Medicaid and all these things. I'm like they're going to think that I have like munchausens, like I'm rolling in with Robbie, who is obviously disabled. I have no idea why my brain does this stuff to me, but she was so comforting and so helpful. And then, as we started meeting the rest of his team, I literally every time I left the office, I just started crying because I was like, oh my gosh, I have a neurologist that has not only a next plan now, she has the next three steps. She knows what she's doing now, what's next, what's next after that? She has extensive notes and is always on our side, his GI. I went in and again was like I really want a different formula and I'm so upset and my doctor in Florida would just not listen to me about this and she just kept saying PDS sure is enough. And I went in just prepared to fight and she was like, yeah, absolutely, if he's not doing well on that, let's try something else. And it was so simple and they were so supportive that I got to the parking lot and I'm bawling my eyes out like trying to put his wheelchair up and like people are probably like, oh my gosh, what they do to her. They supported me and I wasn't used to it.

Speaker 4: 35:12

So our story has changed a lot with coming here, even just with our medical team. Our life moving from Florida to Colorado has changed forever. We did access that Medicaid waiver. My husband is my son's full time caregiver. Now he gets paid to do so and now I actually I use accessible adventures that is my business and I partner with brands and companies and get to advocate and push inclusion. Like what is better than that? I don't know. I feel very blessed for how all of this, I would say, has fallen into our lap, but we kind of like jumped off the bridge not knowing where we were going to land. So I guess that leap of faith. Everyone said are you scared? Aren't you scared? What if you get there and you hate it? And I just had this feeling inside me where I just knew like no, it's going to be okay, it's going to be fine. They're like I can't believe you're selling your dream home and I was like I hear you, but like it's just a house.

Speaker 3: 36:13

You know like we can get another house. The house does not make the life by any means. And I wish everybody right now could see your smile. You were just beaming and radiating light. And what would your advice be to the mom or dad who's listening right now and they are feeling how you were feeling in Florida. What would your advice be? That because not, I understand, like not everybody can you know feels like moving to Colorado is the right step. But what would your advice be to the family who is feeling like I'm not being heard, I'm not getting what I need. I'm feeling like I need to do something else, but I'm scared.

Speaker 4: 36:59

I think that sometimes we have to step into the fear instead of away from it, and I know that it is terrifying. I am not here to tell you that it isn't scary or it wasn't scary, but advocating for our children. If you feel like your team isn't listening, you get a new one. If you have to drive for one, you get a new one. You learn to adapt and to overcome, and you have to find something that brings you joy Anything. So whether that be being out in nature or going on adapted adventures like we do, or it's you plan, you know, once every other week and you invite your friends over, or you have a date night, or your kid really likes art, so you find them an art class for kids that have similar interests and ability levels of them, or if you can't find one, you make one. Whatever it is, you have to find something that brings you joy and hold on to it as tight as you can.

Speaker 3: 37:55

Absolutely so I'm curious between you and TJ. Were either of you like big nature people beforehand? I know you said TJ likes to fish or was that something that came along with moving to Colorado?

Speaker 4: 38:10

I feel like the mindset living and growing up in Florida is I don't know how it's like in bread into us that Florida is the best and it's the sunniest and you just vacation in the state that you live in and that's such a blessing and you don't really need to see anything else. Because what could be better than Florida? I don't know. We kind of built on that wavelength like we spent years just vacationing in our home state, outdoorsy. As far as he was a fisherman, we loved being on the boat. That was the beginning of our relationship. That's how we fell in love. We spent hours and like 12 hours a day out on the boat and I would fish a little bit and then read and tan and we would go to the beach. But outside of that there's not a whole lot of hiking in Florida, right, and you can't see more than what's right in front of you because there's no elevation changes. So we got here, we got to Colorado and I was just blown away. I had never seen real mountains before. I had never even driven to or flown to Colorado in my life. My husband had one time then he had been to like Aspen area, but never where we were actually moving to. I was absolutely blown away.

Speaker 4: 39:18

I always thought I'm a beach girl, I'm going to be a beach girl for life, until I really experienced and just smelled the air here and nature and hiking. It's just so beautiful. And then we went on that first trip with his camper and we went into Utah and we were like, oh my gosh, this is like another world. We're like on Mars. There is the red rocks and the formations and I realized in that moment I feel so small. I feel so small and when we lived in Florida I felt so big and I don't know how else to describe that. But the more you see, the more you realize that you haven't seen anything and it just gives you this thirst for more, just to see so many different types and environments and take them all in and just everything that is here on this earth that has been put here. It's so beautiful and you can't imagine it by looking at a TV screen.

Speaker 4: 40:19

You can't really see that kind of stuff in person.

Speaker 3: 40:22

You are so right. One of the things that you're making me think of is when we went to England for my daughter's surgery. We had never traveled outside of the country with children. I mean, the furthest we had traveled with my kids was an hour and a half flight to see my aunt and uncle in Maryland, and that was as far as we had gone with them. And when we went over there and he had to immerse ourselves in a completely different experience like, yes, they spoke English, but I mean it is still very, very different over there the greatest gift that we got from that, other than my daughter's amazing medical care, was.

Speaker 3: 41:07

It was this eye-opening experience that it is so important to take yourself outside of your comfort zone, because it helps you understand what it means to be in the moment. Because when you stay home or you stay within your comfort zone, you don't realize how easily and I don't mean this is on pessimistic, but I'm lacking words at 9.30 at night for my head you kind of become a slave to the monotony or you become stuck in this monotony and it can become very stale and you don't even realize it. And I was shocked how I found myself smiling more, laughing more appreciating things more Truthfully, I miss things from home that I never even realized I appreciated. But I also loved the things I got to experience. I loved that my kids got to see things that they hadn't seen. You know the number of languages that my children were exposed to over there, just on the subway. Also, the type of language my children were exposed to was pretty colorful. But hey, I mean it was incredible and it saved my marriage.

Speaker 3: 42:17

My husband and I talk about that a lot because we were really, really struggling. We were in a pretty hard place and getting outside of our norm and not being able to hide in our routine and the heaviness of the constant struggles that we were used to, and it was like somebody just removed this veil off of our eyes and it was like stepping into a whole new world and I had a regained sense of appreciation for what I have, but also an excitement for what could be, and I feel like I had kind of lost a little bit of that ability to be excited for what could be or to think about the future, because I was so consumed with what my daughter needed now. What did I need to do for her now? How could I make things better, so that way, when I'm ready to think about the, then she's in the best place possible.

Speaker 3: 43:12

But it was just consuming and I was so worn down and then we literally stepped overseas and I have a whole new view on life and it saved my marriage. I mean, that's what my husband told me. He said I didn't realize how much I was missing until I couldn't hide behind my routines anymore. He was so monotonous, everything was so structured and routine and uninventive, if you will, and it was so easy to miss so much of what was really happening and what really mattered. Because I think the other thing we realized is how much more we were able to see each other and connect with one another when we got outside of our normal environment.

Speaker 4: 44:02

I think that for us, moving was a huge part of that and being able to have our little family unit and prioritize that and just have that time together. Our oldest son did not come right away, so he was already an adult young adult, but an adult and he stayed with his mom in Florida for the first year and we were already traveling in that first year and experiencing all these new things and we were so excited and just really healing something that was so broken inside of us.

Speaker 4: 44:41

And when he came he was like I barely recognize you guys and I've lived with you, my whole life and he was like it's so weird to me, it's like I have to get to know you all over again because you're like different people, Like dad is like vacation dad, like he got to set it all down, but I think that when we can step away he worked at the same company for over 23 years and he was finally able to close the chapter. When you're stuck in that chapter and you just feel like you can't turn to the next page, when you finally force through that fear and you do it, it's very powerful and it lets a part of you heal and letting go of things in our past Aaron, old jobs and just looking, seeking to new adventures and new experiences and bonding in those things together was really powerful for us. I feel like we're closer now than we've ever been and it is funny because he was right. Like our son came and he was like wow, so weird. And even the way that I parent our daughter is different than the way that I parented him and my husband the same way.

Speaker 4: 45:59

But we've learned and grown and healed through all of these experiences and I really feel like the word is like just small, like the more that you expose yourself to new things and hope you realize that it is. Your life is so small. Your problems even are so much smaller than that. You felt like they were and we can push through them and push past them, and there have been trips where things have gone wrong. So I tell this to people constantly. Like we've had a flat tire on our camper on the side of the road, we were driving in the middle of the night and Robbie had a bloody nose. There was blood everywhere. Like there have been experiences that we're not like this went perfect, but we've grown and come together as a family in ways that I don't think we ever would have if we hadn't changed our lifestyle and the way that things were going.

Speaker 3: 46:58

What is your hope for your future with Robbie?

Speaker 4: 47:01

I think that about two years ago we changed all of our goals for Robbie and it went from I want Robbie to talk and I want Robbie to walk to I want Robbie to find joy. So our hope for Robbie is to experience everything that life has to offer. We have a Robbie bucket list. Our other kids have bucket lists as well. Some of them are different, some of them are the same, but we have a bucket list of things that we want him to experience to see.

Speaker 4: 47:31

If he loves it, then he can keep doing it, and if he doesn't, then he'll try the next thing. That's really what we want for him is just joy and to be able to spread his story and that infectious smile and shed that light to other families, because it's been so healing for us to have him out in nature and have him on the adventures and just kind of let go of that fear and let him guide the way. If he's ready and he wants to and we can do it in a safe way, then we're going to do it and I hope that more families can be inspired by that and realize that their kids want to see more than the four walls that make a home. So I think that his story has power and I hope it takes him very far.

Speaker 3: 48:22

I don't think there's any doubt about that. I want to take a moment to touch on something you shared with me the first time we got to speak and I think it was really powerful and you talk to me about and you share as much as you're comfortable with. But you talk to me about how Robbie had been on some medication, doesn't matter what it was, but that his ability to experience his life around him you felt like had been diminished because it was more focused on reducing the seizures, and you and your husband, you know, assessed the situation and I'm not going to say anymore about the story. I'm going to let you take it from there, if that's okay. But I think it's really. I was really touched by that story and I think it's really powerful for us parents to hear that our hopes for our children don't always need to, aren't always going to revolve around this idea of what science tells us perfect health is.

Speaker 4: 49:20

Right. So I think for Robbie we look at his health as a whole. It's not always quantitative, so we track his seizures and unfortunately, november of not this year, the year before he went into status he was stuck in a seizure and coming in and out like back to back for almost 24 hours. We had to adjust. So you'll get this really sweet spot and it lasts for a few years and then they get bigger brain change as they age, hormones and you lose the sweet spot. So unfortunately, we lost that sweet spot. They started him on a new medication which I'm not going to name because I know so many kids who do well on it, I don't want to scare you. So they started him on a new medication and, honestly, for like six months his seizures were doing better.

Speaker 4: 50:13

If you looked at the numbers as a doctor you would be like this is good, right, he's only having maybe two a week instead of seven or six. But as his parents, we would notice that he was still doing these activities with us. But he would have this haze in his eyes and he just seemed so tired and his lustre for life was diminished. He just didn't have the same glow in his face, the same smile and my husband and I talked about it and we were like I really think that we gave it long enough to see if his body would adjust, and I know that his seizures are doing better. But our goals for Robbie also include his quality of life, and I am so thankful that his neurologist is always on board with us when it comes to that. She doesn't want him feeling like a zombie either. So we came to her and we were like I know that this looks good on paper, but this is what we're seeing and he's just sleeping too much and he just doesn't seem to have his same Robbie joy Right. Right.

Speaker 4: 51:16

And she was like okay, I see what you're saying and I totally agree. I think we've given in enough time. His body should have kind of compensated and adjusted and if it hasn't, let's try something else. I actually sent pictures to my family my sister and my mom separately, not in a group chat like a week ago, and they both responded with wow, I can really see the light in his eyes, it really feels like he's coming back, and they saw him in person in November and he was still. It's just a long process to get off and on medications. It's been like a year of kind of adjusting but we're finally getting to a point where it's just he's glowing back through again and it feels so good to see. And I think that when we look at our children's health overall, we have to think about their comfort and their ability to have joy more than just numbers.

Speaker 3: 52:13

Right, definitely. That is something that Emily and I are very big advocates for. We hope to educate more on that. Quality of life is more where we try to steer conversations than medical cures, medical outcomes numbers, things like that. I think you used the phrase perfectly. It's not all quantitative that matters. And can you walk me through?

Speaker 3: 52:47

I'm curious because I feel like there can be some fear making you know, making that choice and where I am in my journey.

Speaker 3: 52:57

I'm in a place where I'm comfortable saying I choose to lean in and listen to my gut and that inner knowing and that peace.

Speaker 3: 53:06

And even though I had doctor after doctor after doctor in America tell me, I can't tell you that you should get that surgery for your daughter, that you should take this big risk because we don't offer it here, but they couldn't give me a reason not to. And all my research and my gut feelings and my considerations about her quality of life were telling me that this was a risk that we needed to take. But it was very scary to not solely look at the medical data that our doctors are clinging to so closely here and it felt a little scary to say no, I want to look at the bigger picture. I want to look at her quality of life now and I also want to look at what her future quality of life opportunities will be if we do this or if we don't do this. So I'm curious what that was like for you and TJ Maybe that was easier for you than it was for me.

Speaker 4: 54:05

I think that with the kind of changes that we make, they can be changed back. So I think surgery decisions I've definitely felt the same way. So as TJ, what do we do? When do we do it? When is it time Right, when is it time? As far as the medications, we keep a log and we have it logged what the medications were at this point when his seizures were this way. And if we need to go back to there, then we can, but it's worth trying. And if we have to halt our trying because it's not working out or the wean isn't going as planned, then that's what we do With surgery.

Speaker 4: 54:45

We he had the corpuscleosatomy, where they sever the main pathway between the two hemispheres of your brain. That was so terrifying. That is an open brain surgery and it's terrifying. We got to a point where it wasn't even a decision anymore because so quickly his seizures were getting so much worse. He was needing rescue meds every day and we knew long term he's not going to have a life expectancy if this continues. Like they were saying, he won't live past five and he was two. So we were like, you know, we need, we need to do something. So we took action. We found the best brain surgeon in Central Florida and we placed our son in his hands and we prayed and it did not take away his seizures and their entirety that's not what that surgery does but it did slow them down immensely. So he does not get rescue meds on a regular basis like that. He hasn't since he had that surgery.

Speaker 4: 55:47

We again came to a conclusion when we came here two years ago. His doctor said I really think he needs to get a VNS, and has anyone discussed that with you? We said oh, you know, they talked about maybe in the future or this or that. And she was like well, I think he's a good candidate now. And basically my husband and I sat down and we did the pros and cons Right, that's what everyone does and we thought this is one more line of backup. This is one more line of defense, because the way a VNS works is there is a machine in your chest and there is a wire that goes up to your vagus nerve that's in your neck, and that machine sends off a little electric pulse, a little signal, and it does that every three to five minutes and it interrupts the signals that are in your brain so that they don't get too chaotic to cause a seizure, what it also does. When you're having a seizure, you can swipe and it goes off a little stronger than that and it can pull someone out of a seizure. Now, this doesn't work for everyone. It does work for Robbie. So when my husband and I sat down, we thought the long term side effects of medications and needing rescue medication and if we continue to give rescue medication, the more you give it, the less it works. This seems like we need that extra line of defense for him for his longevity of life, and I'm so glad that we made that decision because it's been so helpful.

Speaker 4: 57:15

He has a seizure right now. This week they're actually up. I think he said 12 seizures this week, so not a good week. But when he starts to have one, we grab a magnet. They're everywhere. They're on the walls in our house, they're in my bra I mean they're everywhere and we just swipe him and he pulls right out. So that seizure that would have lasted a minute is now lasting 10 seconds. Compile that over the next 10 years and think about what that would do to your brain. So we just try to make long term decisions if we can and trust our gut and listen to our team. If we have a good team and if we feel like we don't find a new team.

Speaker 3: 57:57

I really love your family. Thank you for reminding us that there are, like when you were talking about medication, I think it's really easy to get paralyzed by fear of, oh, if I make this decision, it can feel really permanent. And sometimes I think our medical providers they don't mean to but can make you know don't exactly help us feel different than that. And I love how you did what a parent does, you pay attention, you track it and if it needs changed, you change it, you adapt to it, and I think that is something that can help release us from some of those fears that we're facing. It can help us navigate those decisions that feel so heavy. And so I just I really appreciate you calling attention to that because, honestly, sometimes even I forget that.

Speaker 3: 58:49

You know, with little Emery here is joining us at 10 o'clock at night because she doesn't believe in sleep, I can't see you, oh, she can't see you, Christy. So she's moving the mic. Can you say hi, hi, there, we go, hi. But you know, sometimes I get scared to take her off of a medication. But what if she starts to get infections again? Well, if she does, then we go back on the medication, and it can be so easy to feel like, oh, if I do this, this is forever and it's for always, and either I help her or I ruin her.

Speaker 4: 59:23

Life is not so black and white. A few things that I learned, because I, as a caregiver, always suggest that you seek therapy Amen. Life is not always black and white. There are things that live in the gray. Okay, so that's one of those things. It's not. If I do this, she's either going to be better or she's going to be ruined.

Speaker 4: 59:45

That is not. No, there is a gray period in there where, if it doesn't go well, we just go back and there is, there is a middle ground. And then the other thing that I think was the most powerful is two things can be true at the same time. Yes, so I thought, and it's internalized ableism from just not knowing any better. If my son can't walk, he will not have a happy life. That is in my head, that is what I thought, and we were going to do every type of therapy and I was going to help him. I was going to make sure that I could help him do this and he could walk and he can talk, because if he couldn't, there's just no way that he could have that joy.

Speaker 4: 1:00:27

And that is so wrong. It's so wrong on so many levels. And looking back, I'm like, oh, my goodness, christy. No, that child has so much joy, he has so much love and life and he has experienced like. He's been to 27 national parks, he's been to 13 states in his camper, he's gone in a helicopter and an airplane, he's been ziplining, he's been kayaking, he's been river rafting. I think that, whether or not he could walk, he is living, and that is such a powerful thing to know, and I think that a lot of times, we need to look at these adult disabled creators that are out there as well and they're sharing their stories and they're still living their lives and they have beautiful lives, even though their lives are different than what maybe we initially wanted. For a child, right? No?

Speaker 4: 1:01:27

one says oh, I really hope my child has all these challenges.

Speaker 3: 1:01:31

No, we would all gladly take them. I think we would. I think every parent can very easily, without having to think about it, say I would gladly take them on for my child if they didn't have to.

Speaker 3: 1:01:40

Absolutely but that's not the reality and I like to think one of our greatest superpowers that we have is our ability to redefine what wonderful, what beautiful, what good, what great, what a beautiful life is. That is a superpower. When you embrace that as something that you have the ability to do is redefine, it gives you a whole new lease on life and it gives your child the runway to flourish. Let them fly on their own terms and celebrate it.

Speaker 4: 1:02:16

Absolutely. That's another thing that if you seek therapy and help for yourself, the biggest thing learning to reframe is what my counselor always called it reframe that thought. But so instead of my son can't go to a regular school, I get to be my son's teacher and I get to spend time with him all day and experience him learning. It's just reframing, reframing those thoughts. My son can't go hiking. My son can go hiking. We'll find an accessible trail or I'll carry him. He can do anything. We adapt and we overcome. And no one can convince me that my son does not have an amazing life and that he is not happy. You literally won't, because he definitely does and he is happy and he has a smile and his life is worth living. And I wish that these are things that I knew and that I realized and I leaned into sooner, and I think that you really have to go on a journey of healing yourself to get to that place. Yep.

Speaker 3: 1:03:25

And it's okay to go through that process. There's nothing wrong with that and I think giving ourselves grace to be okay with the time, like there's grieving, that is a part of this and it comes and goes and it still comes. I think it's always going to. To expect it to not is what was it you said earlier about expect nothing, appreciate everything. That really sticks out, really stuck out to me because it makes me think about what a way to look at life truthfully and when you, when you say expect nothing, can you expand on that? Because I feel like I understood pretty quickly what that meant. But I want to make sure to. Maybe somebody who's at the beginning of their journey, like maybe hearing the words expect nothing doesn't feel so comforting.

Speaker 4: 1:04:10

So I, when we plan a trip, expect nor amazing nor horrible, perfect. So the pendulum swings. You have to let it swing and if you go in with super high expectations, then they're not going to be met. If you go in with so low of expectations, thinking, well, my child just can't do any of this, then you're never going to experience life. So you just have to remove the expectation, expect nothing. Remove the expectation and just live in.

Speaker 4: 1:04:43

What actually is is and I feel like it's so much easier said than done and grief comes in waves and I was talking to my husband recently about grief because it felt like for the longest time I was drowning in it. The waves just kept hitting and I could barely breathe and I'm sitting in the same waters and and I really want you to hear that I am sitting in the same waters but through healing and through therapy and through finding ways to grip onto the joy and just refuse to let go. It's like I'm floating on the top of them now and I'm still getting splash on the face. I still feel it. It's a bit obnoxious sometimes, but I'm not drowning, waiting for someone to come save me and there it's just such a different place to be and it's not easy to get there and it takes a lot of work for your whole family, for all of us, and it's not work that like, oh, I did that work and now I'm fine. I actively have to continue doing that work and reaching that acceptance and I think that when you sit back and you look at how much you love your child for exactly who they are whether they have these disabilities, medical complexities you're going to love them for exactly who they are. You have to turn around eventually and look in a mirror and say, if I can love them for exactly who they are, I can love me for who I am and I can give myself grace and I can know I am doing the best that I can. I am doing the best that I can do.

Speaker 4: 1:06:20

I look back at myself nine years ago and think I would do and act the exact same way. Absolutely not, I really don't. But do I look back and think poorly on the woman that I was? I don't, because she got me here. She got me here. She went through all, all of the stuff and pushed it out of the way and climbed up the mountain and got me here and I'm proud of her, even if right now, looking back, I would think, oh man, if I would have known this. But that doesn't help. No, you can't go back and you can't change it. You have to give yourself grace and love yourself for every chapter that you've been in, and that's how you can keep the pages moving wow, I think I needed to hear that tonight.

Speaker 3: 1:07:07

Thank you really. You know you were telling me earlier about how men can look at things simply. I was about to say that's so profound, but at the same time I'm like no, it's so simple and it's so true that the way you just delivered it, I think, is the I feel like I'm kind of having this moment I'm experiencing. It's the first time I've ever really been able to believe it and feel it, and I'm sitting here holding my daughter and so often I've looked back at how far I felt, how much I fell apart at the beginning and how upset I was with myself initially and I thought I was weak and I thought that that meant I wasn't being a good mom. Like here's my little baby girl, my infant, going through. I used to refer to it as Groundhog's Day of Hell, because every day for an extra, for a long time as a baby after her first surgery, was just this. Like you knew it was coming.

Speaker 3: 1:08:08

It was uncontrollable pain.

Speaker 3: 1:08:10

It was struggle after struggle.

Speaker 3: 1:08:13

It was no answers, scratching the heads, not knowing what to do, and I just kept thinking like I'm failing, I'm failing, but I was so hard on myself and it wasn't until I, you know, several months later, like I had no choice at that point, I fortunately was referred to EMDR for trauma treatment and I realized that I was living my life through this trauma filter.

Speaker 3: 1:08:42

Everything I experienced was having to go like go through this process of crossing this threshold, of being interpreted through trauma. First I wasn't seeing anything clearly, I wasn't seeing myself clearly and I didn't realize how much trauma can really tear away. It just tear away at how you see yourself and that bleeds into everything. It was bleeding into how I was experiencing life and I was just stuck on. This loop of it was pretty tragic, and so thank you so much for sharing the importance of therapy, because there's a lot of people I feel like a lot of caregivers are like we don't have time to worry about our problems, we have to worry about our child exactly you have to, because if you don't, if you don't look at you and work on you, then you can't hold the weight of everything that you have to do for them.

Speaker 4: 1:09:40

You, you just can't, and it's it's still heavy, but you get stronger and you learn how to hold it and you learn how to cope and you learn how to sit with it. I actually shared on our social media so on my instagram, in my little highlight bubbles, there is a medical mom playlist and you can go to it. It's free, it's on Spotify and it's on Apple Music and I had all the moms in our community put songs in that they resonated with. As a medical mom and this is my I need to let myself feel music okay, so, and everyone else is too, and it's so funny because we're very good as caregivers at compartmentalizing.

Speaker 4: 1:10:26

I'm not getting emotional while we're at the doctor. I'm not getting emotional while I have to homeschool. I am putting that all in this little box, and then my entire day goes by and then some of us take the box and we put it on a shelf and we walk away. Please don't do that, because eventually all that stuff is going to fall on your face. You cannot do that. That is how trauma builds.

Speaker 4: 1:10:49

So what I do and everyone thinks I'm crazy, but I tell you it works is I will at least at least once a week if I'm having a bad week, it's more often I will sit down and purposely open the box, like I am sitting down with the intent to be emotional, to grieve and to let it out. I will put on my medical mom music playlist and I will listen to it and take a bath or take a shower or lay in bed and have myself a quick little cry, if I need to, and just release, because if we constantly push things down or put things away and we don't let ourselves feel anything, then eventually you can't do it anymore and all you feel is everything. So it's so important to like. My my old counselor used to say it's like a bottle of soda, right. So you shake it up and then you just barely open the cap and like and then close it again. But if you keep doing that then it's never going to explode, right?

Speaker 4: 1:11:48

so you have to, you have to feel it to heal it and it's not pretty when you do, but once you get used to it and you get on a regiment of allowing yourself to feel things, I promise it helps. Practice makes perfect, practice makes perfect. Well, practice makes practiced.

Speaker 3: 1:12:10

But that's true. As soon as I said that, I was like nope, we don't use the perfect word around here practice makes progress.

Speaker 4: 1:12:17

That's why I always say to my daughter oh, I love that that's far better.

Speaker 3: 1:12:20

Practice makes progress, oh my goodness okay.

Speaker 3: 1:12:25

Um, I am realizing and I'm sure everybody else too, like we, I could keep talking to you about a million things, but one I don't want to take the rest of your night. Two, I want to have you back in the future, so we're going to leave some more for next time, if you, if you'll have us again, because you are absolutely you are such a gift and thank you for sharing that with us. I have a lot that I'm going to be thinking about from our conversation. So, just personally, think, like I said, I didn't know that I was talking about the moms and the dads who would be listening to this podcast later, who needed to hear the message you had to say, and not intentionally, I wasn't realizing that I was the. I'm one of those who really needed to hear your message tonight. So, thank you well I'm.

Speaker 4: 1:13:07

I'm glad that we connected because I think it's important to stand as a community and support each other and hold each other through this, because no one else knows how it feels, other than other caregivers right it's it's a powerful community and we can create change and we can create hope and I'm excited for it well, thank you.

Speaker 3: 1:13:32

I'm so honored to feel like we have just merged our circles together and I think there's a really beautiful future ahead, and I'm so thrilled to have met you and gosh. Yeah, there's gonna be a lot of follow-up conversations, all right. So before we sign off, do me a favor and let our listeners know they can find you on Instagram. Is there, are there any other accounts that you recommend, or I know that I stalk you on Instagram yeah, so, um, I'm everywhere, so I'm on Instagram, facebook and TikTok, accessible at accessibleadventures.

Speaker 4: 1:14:11

They're also all linked on our website where our blog is. It's wwwaccessibleadventuresnet. Another cool thing about the blog is I put a search button on that main page so you can type in a location and see if we've been there. Um, I haven't blogged everywhere, so if it's not there, my inbox is always open, and I feel like a lot of people say that and they don't mean it, but I mean, I really mean it. My inbox is always open. I'm pretty quick at answering and if you're planning a trip and you're wondering if I've been there, if I haven't, I've got a pretty good community of other traveling families that you know lean into accessibility and I can lead you in the right direction, hopefully awesome.

Speaker 3: 1:14:52

Well, we will make sure that we include all of that information in the show notes, so be sure to check those out after you've listened to this. And with that I just thank you, christy. Please thank your family for giving us this much time with you tonight.

Speaker 4: 1:15:07

TJ's the real MVP. He's got all three kids and is probably cooking dinner out there by himself.

Speaker 3: 1:15:12

So, um, I'm gonna go to TJ shout out to you out for Super Dad, but he's got one heck of a partner. My gosh, um, thank you. You guys are quite the an incredible team and we can't wait to hear more from you in the future. But thank you, and everybody out there, tell us about your next adventure, because you deserve it you are capable, you are equipped and you are not alone.

Speaker 1: 1:15:40

Together, we can do hard things for our children if this episode connected with you and you want to hear more, be sure to hit the subscribe button we would also love to learn about your personal journey and how we can support you reach out to us at contact at charlottehopefoundationorg and last but not least, if you know of someone who could benefit from this podcast, please share. We hope it's fair.