Transcript
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You know, your dad had other powerful words.
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Um, he said, happiness lies in the difference between between being struck by a challenge and being stuck in a challenge.
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And that really hit me because that again is another perspective shift.
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I think we all have moments where we need to kind of pause and catch our breath and just be still for a while.
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But that I don't call that stuck.
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Did you ever feel stuck during times when there was progress or maybe you felt like you weren't really moving, but because you couldn't see it or feel it, but you were doing everything that you could?
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Yeah, you know, I I came up with this idea of of the power of better, you know, or just uh better moments.
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And so it's like what what was different about today than yesterday?
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One small thing that got better.
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It may not have been the best, it may not have been achieved my goal, but did something get better?
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Did I, you know, get the dog out on time or get the get get the dog out, you know, early enough for him, or did I wake up without the alarm clock, or did I make a tiny bit of progress and I let that count, you know, I let that count that that I was able to do something a little tiny bit better than the day before.
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And just seeing that progress, you know, had a gratitude journal that I was doing three things I was grateful for every day.
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And I said, well, you know what?
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I'm gonna attract three things that were better today about than yesterday.
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So that encouraged that forward momentum.
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You know what?
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Making it that small sometimes is what we have to do.
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Sometimes we can only pay attention to the step in front of us or the step that we just took, you know, to where it sometimes it is just, you know, really honing in on a smaller amount of time.
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I really like that.
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Madison's journey with autism, of course.
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Autism is very special to my heart, of course, but her story really touched me as an autistic adult as well.
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And I love how you celebrated her voice after she started AD ABA.
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And I loved her place in the family.
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I loved how Britney wanted to include her in the wedding and the way that that happened, and then the photos that were taken.
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And it made me think of your mom as well, because photos were so important to her.
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What were your what were the parts of your kids that helped hold you up?
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Because they seemed to all hold each other up and and you held them up, but what were the parts that helped hold you up?
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You know, they kept growing.
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It was like I was waiting to know after, especially after paralysis, I was waiting to figure out what I was gonna walk again.
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But you know, they had their needs.
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They were three, five, seven, and nine when I was paralyzed.
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And so Madison needed uh, well, at the time that was 1997, and so there wasn't a whole lot about autism.
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And this is um when I had uh reached out to a fellow uh parent, sent home this yellow flyer in uh Madison's backpack, and and that taught us about ABA or invited us to her home to learn about uh ABA therapy.
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We used that with Madison, but and then later that that uh transaction of sharing information that wasn't available through through a doctor or educator, that became the basis of Pathfinders for Autism.
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And that put me on that track, you know, to work with with that, you know, toward that for two for three years before it was incorporated.
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So her needs helped me journey through my weighting of if I was gonna walk again.
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So it was nice to redirect my energy instead of all about me to how can I help Madison?
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That was so important.
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I love that part of the story, and that uh the Baltimore Orioles' wives ended up, you know, raising$100,000, which was the most that they had raised at that time.
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And then even Michael Phelps, here he is, he jumps on board as an honorary member and then a radio spot for you.
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I thought that that was so great.
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Can you talk more about that?
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Sure.
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So we uh in the in the early days, we were just a small group of parents sharing information.
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We're trying to share our discoveries.
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And then in 2000, we were incorporated, we hired our first employee who had a uh a child with autism because at the time everybody was saying, wait and see what happens.
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And we had uh wanted people to get as as many resources as they could and talk to another parent on the phone.
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This is way before Google or the internet or social.
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So we uh started out that way uh with just a person answering the phone and we developed a database and then we created special events to try to help raise money, and and now you know we serve 20,000 people a year with oh my gosh, yes, some family events where people can go and and feel safe going to the aquarium with their kids with autism or long gardens or there's different uh activities we have, and we also train first responders, you know, whether EMTs, uh, your your next encounter is gonna be with a person with autism.
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You know, how would you respond?
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How can you be sensitized to their needs?
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So been great in 25 years.
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This this year is our 25th anniversary.
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Oh my gosh.
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Can I ask how Madison is doing?
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She's doing well.
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Um, she's still she's 33.
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She uh still can't read or write or ever be left alone, but she's doing very well in a um uh residential uh group home.
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And then she has a day program as well where she's out in the community every single day.
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So very grateful for those support services that Path Founders actually helped me find.
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So that's they're still finding paths for no matter what age, uh, because it seems like they always have uh needs that are at least outside my capacity to handle.
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So it's good to have kind of a safety net there to help you.
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That's interesting that you called it Pathfinders because you had had this thing about paths, you know, two different paths.
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And then you created the you just took coffee containers and you drew these circles interlocking, and then you created this logo, and then you came up with this.
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I mean, you were just so thinking outside of the box and trying to do something instead of just sit in the pain.
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And I just thought that that was amazing that you did that.
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And look, I mean, you're still now 25 years later.
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That's so great.
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Yeah, and the and the path keeps going.
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And I I think that the idea of a of a path is is that sometimes it's just finding the path.
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They're already out there, we just don't know about them, so it's bringing it to light, you know.
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Pathfinder.
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Uh sometimes we uh create our own paths out there, but most often their resources is just getting it in a place that people can discover it.
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But it's a very uh rewarding experience to we have an amazing staff now that are so helpful and so have so much expertise.
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Is it just within the Baltimore area or is it you know nationwide, or what is it pretty local?
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It is a a statewide organization, but but our data but our database serves people from all over the world.
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Oh my gosh.
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Yes.
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So you can do PathfindersforAutism.org and go on there and search.
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You can search by age, what age your child is and what services are recommended.
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And we have resources on there, which are primarily uh in in the Maryland area.
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But there's some, you know, we screen the resources we add to our database, and and we're open to others uh contributing to.
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That's right.
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I might have to look it up when I get off of here.
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Yeah.
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So with your paths and rethinking possible, when you talked earlier about two different paths, you also did that with your own life when you were in the wheelchair.
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And um, one if you would never walk again, and one if you could.
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And I thought that that was brilliant.
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Was that your way of also back, you know, creating these two paths?
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And I think you already might have answered this question, but was it your way of forward thinking during a time of acceptance?
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Yes, absolutely.
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That's that is how I kept myself moving because it it was too hard to just wonder all the time.
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And I think that uh, you know, as Winston Churchill says, when you're going through hell, keep going.
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And to keep going, I needed to feel like that I can make progress.
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So I did the parallel paths, what happens if I can walk?
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What happens if I couldn't?
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And then uh, you know, I had a a a moment that I decided to to give up um on walking.
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This was 19 months in.
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And I I I think we have talked about uh kind of my big toe moment where where I decided that was the last thing I could wiggle before the paralysis was complete was my left big toe.
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And after so many, um after 19 months of three therapy three times a week, uh, I really wasn't making any progress.
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And I I decided to just let go of that.
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And so I stopped my therapy.
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Uh, and I was able to lean in more fully to a life as a paraplegic, life as a paraplegic mom.
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And I realized looking back that therapy three times a week had taken me away from my kids at the dinner hour for for three nights a week.
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So I thought, well, I have that time now.
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And so I was like, we're gonna do what I could remember from my mom's days, and we had candles with our dinner, and I played music.
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This was back with the CD clubs that were so I I bought a bunch of CDs that were funky disco that I loved in my college days, and then jazz, and then classical, and I felt like I was creating another environment for us to be family uh together.
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So uh, but I think we we all in life sometimes have these big toe moments when it's like you've gotta it's time to let go of something that's not gonna be a reality for your for your life.
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Yeah, I think it's that leaning into acceptance instead of resistance, you know.
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I mean, that that's a hard place to be.
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It's crossing that line over into fully acceptance, I think.
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It is hard.
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You know, acceptance also had a different take for me in your book.
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Uh Matthew had and all he had gone through, and your miscarriages, and after your daughter Madison's challenges and Peter's and trying to manage as a single parent in a wheelchair, you know, your entire story of now you have your brother had passed, your dad had passed, you got the call about your mom, and you say you went right to acceptance.
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You had spent a lifetime of hearing these horrible news, this horrible news, and then going through maybe the grief process or whatever, the steps that you need to go to, but then you went straight to acceptance, and it made me realize that I too have been through so many things in my life that I think sometimes we just go straight to accept and it's acceptance, and it's like that we become robots to pain, and it's just okay, I know the drill, you know, and you just go through the motions, okay.
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Now we gotta do this, we gotta the funeral, whatever.
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And you just are just so numb to it, and it's more something like that.
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I don't know.
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Is that how you felt?
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Yeah, her.
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I think that sometimes when you're you have this unexpected event that's horrific, and then you you move to this why, you know, why did this happen?
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I don't deserve this, this isn't fair, all this emotional fog.
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Um but after a while you realize that that doesn't really do you any good.
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You know, you it's an emotional thing, you you need to process it, but at the moment, you need to like get an action for for what is the next step?
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What is what are things that need to do?
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And and and I call it this pivot from why and why did all this happen and all the angst and outrage and and uh that you feel with that why to how?
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How are you gonna do it?
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And how puts you into acceptance mode.
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And it just that change of question from why to how gets you more in acceptance, and I think helps you move through it uh more maybe efficiently.
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That doesn't mean that you can't come back to why at some point, but we knew our mother had had a serious illness.
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We didn't know why.
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We didn't, you know, there's a lot of more mystery that there was to investigate, but Rachel got there and I knew what I needed to do to address the situation.
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Yeah, and I think it going from why to how gives you that sense of control, you know, it's like all of a sudden you you can you can do something with the why.
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Yeah, you park that why and and come back to it, but your how it's it puts you in problem solving mode.
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It's it does, it does.
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Wandering or pondering, you're just gonna, all right, let's do it.
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You know, what do you need to do?
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Examine your resources, who can help you?
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Yeah, that's what you do, that's what we do.
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It is.
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You know, one of the things that I absolutely loved about your family was that you found ways to celebrate and have fun, and your family's sense of humor carried all of you, I believe.
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When your dad did whatever he did in the van, when it, you know, and you're gonna you got this van, you're going to go drive it for the first time, and you're in there, your mom's, I guess, in the passenger seat.
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That's how I pictured it.
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And your dad does something, and you just tip back and you're staring at the ceiling, and you look over at your mom who's back's to you, and her shoulders are shaking.
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And I thought she was going to be crying.
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And she turns around and she's like hysterically laughing.
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I was like, that is awesome.
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She did say, Are you okay, baby, first, just before she started laughing?
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But she was, you know, it was the perfect combination.
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Dad could tell a joke.
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I mean, he was a jokester.
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He just, he just was.
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Uh, and and mother couldn't tell a joke to save her life.
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She'd tell you the punchline before she would tell you, you know, the story.
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But she had this we call it tickle box meltdown, where she would just cry with tears.
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She would just be laughing so she couldn't talk.
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And it really was funny because I was on my back, and at the time I was wearing these tatten leather Doc Martin shoes, and I was looking up at the ceiling, and there were my legs.
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Of course, I can't move my legs, but they're hanging above me.
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Thank heavens I have a seatbelt on.
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So it was dad was trying to use the hand controls of my car, which are meant, you know, you have to be trained to use these things.
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Well, he he just doesn't he skips ahead sometimes when he's looking at directions.
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So he he just hit that thing and the van lurched forward and I went backward, and she was a puddle of tears.
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But we um we really had a lot of humor in our in our household.
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We did.
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And when you were talking about being stuck or struck, I had written a morning fuel entry about that because I used it when uh that that that phrase when Rachel had come to visit me during uh uh I think it was early late March one year.
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Anyway, we had a surprise snowstorm and uh she couldn't leave, she couldn't fly back home, um, and we were stuck, you know.
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And instead of being stuck, we decided to go out and play in the snow.
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So I did, you know, donuts with my wheelchair and and she did snow angels.
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That is so funny.
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You know, we were struck by the challenge instead of being stuck in it.
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So it really just gave us a lighter way to look at life because sometimes it's just so crazy.
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It's funny, you know.
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How can all this stuff happen?
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What's you know, why not laugh about it?
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We sure we're overcome, you know, by grief and by anger.
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We can be overcome by laughter too.
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That counts.
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Sure.
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Right, right.
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And I read that passage in uh Morning Fuel, and it was really funny.
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I pictured you doing that.
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Uh yeah, it was great.
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And you're right, you just have to make the best of it.
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You just have to.
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I mean, life is happening, you might as well laugh along the way.
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And you had a dance party after your divorce.
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I mean, that was awesome.
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And also, the picture in my mind of you trying to get ready in the bathroom with your friend and your sister for that wedding.
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And you know what?
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It was hilarious.
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Yeah, they uh we never did that again, but let's just say I went up on the floor and had a friend pulling me up and Rachel shoving me to the buttons, uh, it was an interesting time in the bathroom.
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Well, it made a memory, right?
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Yes.
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And when you were at that wedding, you had a moment you were able to request a song and you wanted to play that funky music, and you danced, and it was the first time that you had danced to that song since you and your brother Forrest had danced to it 20 years prior.
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So, what I loved about what you said was my body might be paralyzed, but my soul's moving on.
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I mean, how profound.
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Can you tell me about that moment of freedom?
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You know, it's um I enjoyed dancing so much, and Forrest and I won the dance contest.
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You know, back I came back my first year of college.
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I came back and he and I um entered the high school contest.
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I still have to see the trophy right there on my computer.
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Um but uh it was uh it it brought back I could shut my eyes and remember everything I did with him.
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And So I I loved wheelchair dancing and I'm just I I decided to embrace that with you know I I can't move around the dance floor like I used to, can't use my legs, but I can have the the music in my heart and let the memory fill fill it and really enjoy it.
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Yeah, it seemed like music was one of those things that helped get you through as well, besides laughter.
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Yes.
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Yeah, music is really important to me too.
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I I can take it go back to a moment in time and I can, you know, feel that when you hear certain songs.
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So yeah, they really do carry us.
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One of the things though that I hated the most for you, um, one of the things was how you were treated differently.
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And I touched on it earlier, but I, you know, that column that you created from where I sit.
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Again, you were taking back power, but you have a story of being at your daughter's new school and nothing was wheelchair friendly.
00:21:06.960 --> 00:21:10.799
And you would even call ahead and ask for a ramp, but they didn't have the ramp.
00:21:11.039 --> 00:21:18.160
They had, you know, thick rug, you couldn't get your legs under the table, you couldn't reach the food at the buffet.
00:21:18.400 --> 00:21:22.559
You know, they weren't making sure that you were okay.
00:21:22.799 --> 00:21:46.960
And that just that really hurt me for, you know, I was hurt for you, but you knew it would probably be hard, I'm sure, because you know, all these women are socializing and everything, they're leaving you out, but you showed up, and even though that it would be hard, and then your dad's words from pity to power are perfect for this moment.
00:21:47.200 --> 00:21:50.079
Did you feel empowered by his words in times like this?
00:21:50.240 --> 00:21:56.400
Did it shift your attitude and not letting other people's heartless actions affect you?
00:21:58.079 --> 00:21:59.119
I think it did.
00:21:59.279 --> 00:22:07.599
I think it has just been underneath a lot of the times where I've had to make that that pivot from pity to to power.
00:22:07.839 --> 00:22:47.119
In that particular instance, I I at one point I wanted to just I was actually heading to uh the closet to just have a good cry, and somebody stopped and and said something about Brittany, and it was um, and we struck up a conversation, and then she asked if she could help me with my plate, and then she sat beside me at the table, and then I started focusing on the needs of my daughter instead of my needs and what I could learn from the community that was there, and there was real strength in that to learn something for my daughter that could be used right away.
00:22:47.359 --> 00:22:50.720
Uh so yeah, I did think about that.
00:22:50.799 --> 00:23:07.519
And it's um another um another thing that mom used to say, and I just revisited this with a friend some time ago, and and she would say, you know, Becky, don't, don't let the situation, don't let it get the best of you.
00:23:08.559 --> 00:23:10.000
Don't let it get the best of you.
00:23:10.079 --> 00:23:13.920
And I and I would think about that, even in that situation.
00:23:14.240 --> 00:23:17.200
Was I gonna let that situation get the best of me?
00:23:17.440 --> 00:23:18.880
Was this the best I had?
00:23:18.960 --> 00:23:23.680
And were they gonna, was I gonna waste my best, you know, being sorry for myself?
00:23:23.759 --> 00:23:28.000
Or I was gonna find that my best and use it in a different direction.
00:23:28.480 --> 00:23:30.960
So that those words too.
00:23:31.279 --> 00:23:32.799
What is the best of you?
00:23:32.960 --> 00:23:36.000
And where are you letting that uh go?
00:23:36.319 --> 00:23:38.640
Are you controlling where the best of you goes?
00:23:38.720 --> 00:23:43.119
Are you the best of you with an outburst of anger?
00:23:43.279 --> 00:23:45.920
You know, the best of you goes with envy.
00:23:46.079 --> 00:23:49.200
The best of you, where is that best of you going?
00:23:49.839 --> 00:23:53.680
And of course, we want our best to go in a positive direction.
00:23:53.839 --> 00:24:00.240
We want people to see our best and we want our best to absorb what's around us, perhaps to help somebody else.
00:24:00.319 --> 00:24:03.680
If it didn't help in me, it I would might as well help my daughter.
00:24:03.920 --> 00:24:06.720
And so that was that was the biggest shift there.