Journeys of Hope - Episode 21

Jason’s journey from barely responding to speaking, eating, and gaming again is a powerful story of resilience, teamwork, and hope. After a medically complex illness involving Chiari malformation, hydrocephalus, and brain injury, Jason and his care team faced months of challenges while working toward each milestone. In this episode of Journeys of Hope, host, Rebecca Solomon, speaks with Jason, his mom Shari Ann, neuropsychologist Will Watson, PhD, ABPP, and speech-language pathologist Katie Ingrasci, MS, CCC-SLP, TSSLD, who share how rehabilitation helped Jason rebuild communication, movement, swallowing, and independence, and how his family kept advocating through the hardest moments.

You can also listen to this episode on Apple Podcasts, Spotify, and YouTube.

TRANSCRIPT

Rebecca Solomon (00:05)
Hello and welcome to Journeys of Hope, a podcast from Blythedale Children's Hospital, inspired by the strength, resilience, and unshakable spirit of medically complex children. My name is Rebecca Solomon. Today's story is about a teenager who has faced more challenges than most of us could imagine. And a mom and a care team who never stop believing in his progress.

Now during an incredible, ongoing journey of recovery, Jason is getting ready for the next chapter, home. Jason and mom, Shari Ann, welcome to Journeys of Hope.

Jason and Shari Ann (00:39)
Thank you. Thank you.

Rebecca Solomon (00:41)
You're

welcome. And a huge welcome to a couple of Jason's multidisciplinary care team, neuropsychologist Dr. Will Watson, and speech language pathologist Katie Ingrasci. Welcome.

Katherine Ingrasci (00:54)
Hi, thank you.

Rebecca Solomon (00:55)
All right, we have a lot to get to in this podcast. And I will mention Will, you are no stranger to Journeys of Hope. We had Will on here several months ago to talk about our traumatic brain unit at Blythedale Children's Hospital. So it's only fitting that he's back on for this recording to talk a little bit more about how that played a part in in Jason's condition and his journey at Blythedale. But Jason, I want to start off with you. You've been through a pretty incredible journey.

And if you had to describe this whole experience in your own words, what would you want people to know?

Katherine Ingrasci (01:30)
I want people to know like to d to describe this journey, it's like being you're at the top, then you go down to the bottom, then you go up to the top, so it's a roller coaster.

Rebecca Solomon (01:45)
It absolutely is, yes. And Shari Ann take us back to when you first realized something was not right with your son. What was that time? What did it look like for both of you?

Katherine Ingrasci (01:56)
I would say that would be just after middle school. Like after graduation, like a month after I'd say like a month and a half after graduation, after completing middle school, he started complaining of headaches and we didn't really know what to do because I tried everything in the book and nothing was working and then I realized that he was just getting sick.

worse and worse by the minute. So I realized that this was out of my comfort zone at this point.

Rebecca Solomon (02:32)
And Jason, you knew you weren't feeling right, something was off.

Katherine Ingrasci (02:36)
Yeah. Like the way I felt I felt like

it was it's it's like hard to like walk.

I was just in bed the whole day and even the next day was in

then the next day it would have made like pretty much like two days that I've been in just only bed, never stand up and go walk

wasn't strong w with like my legs. My legs were weak and and like I was walking pretty sloppy. So like I was like hitting like hitting the wall and then like just it's swaying back and forth pretty much. Like there was something wrong wrong.

and then that's when my mom did the

Like my my mom was trying to get me to the to the doctor's office but then mishaps happened and then yeah it was a big it was that's the beginning of the story.

Rebecca Solomon (03:42)
Thank you for sharing that. It's so difficult and scary, not knowing exactly what is wrong and what is ultimately this diagnosis. And and Will, for listeners who may never have heard of Chiari malformation with hydrocephalus, can you explain what that means in a way that families can actually understand and maybe even tell us a little bit about what made his situation particularly complex?

Will Watson (04:09)
I can try, yeah. So in Jason's brain there's a part of it that developed a little bit differently that didn't really notice until he was at this point in life and maybe just like the way that his brain continued to grow, part of the back of his brain sort of pushed against some of the areas where the fluid in the brain has to circulate.

And so because it blocked off some of the pathways, the fluid in his brain wasn't able to flow normally. and then because of that, the fluid builds up and it starts to push against the rest of the brain. Since the skull is a closed place, when that pressure builds up, it can start to cause other problems. And so particularly

the one exit point is at the end of the skull towards the spinal column and right there at the brain stem is a lot of our most important functions. And so it gets really crowded down there and things can push against each other and cause a lot of problems and cause you to have difficulty moving, have difficulty obviously headaches would be a part of that with the built up pressure in the head. And so things just sort of

started to cascade, once it started to get blocked, the pressure made it even worse and started causing other problems and and making it even harder for the fluid to flow. And so that's where its progressive symptoms started to come from.

Rebecca Solomon (05:36)
And then ultimately someone like Jason,

he comes to Blythedale in hopes of working on that diagnosis so that he can regain things that he lost because of that diagnosis. Basically, that's how it works.

Will Watson (05:52)
There's a long journey that I'm sure Jason and Shari Ann can fill us in on about

Between when they started knowing symptoms, I think there were multiple hospitalizations before they came to Blythedale So there was a lot of temps attempts to relieve that pressure. And in the process, there were other complications that arose, and they found that in the process there were some spots of his brain that became damaged. and then they had to come up with various drains, and there were infections and there were other sorts of things. So it was not just the

It was like one small thing starts and then a bunch of other things get piled on and by the time we met Jason he had already been on this journey for a while.

Rebecca Solomon (06:40)
And Shari Ann, when you receive that diagnosis and things continue to get complicated with Jason's health, you know, any mom who hears that news and sees their son in that condition, it's extremely difficult. can you share a little bit about that?

Katherine Ingrasci (06:58)
Yeah, 'cause after we got the diagnosis of what it was, he had a roller coaster journey. He even stopped breathing prior like I would say like two days, three days after he was admitted to the hospital. He stopped breathing for a while. We eventually had to do MRI, CT scans,

started draining the fluid and we realized that it was just a lot

fluid he had numerous infections in the lungs, in the brain.

And we were just at a standstill for like probably like a month and a half before we got the shunt put in on the inside, and then prior to after that we had the trach and the G tube done in order to have him do rehab, and then prior to him starting his rehab journey, he had two revisions, which was like a major setback. And then it was after that second revision.

He came here to Blythedale in December 2024 and he was like not responding, not doing anything. He had spasms, he was retaining fluid. It it was like a roller coaster for I would say it's now a a almost two years, pretty much.

Rebecca Solomon (08:26)
Were you confident

when you were told and you decided that Blythedale would be your next stop?

Katherine Ingrasci (08:33)
I was speaking to the staff at Yale. They were like, maybe you could try another facility if you weren't too, you know, like open to going back to the first one. So then I decided and I was like, you know what? I would do that. And then because his dad lives here in New York, so I was like, he

be

closer to dad even though I would have to make the journey every day from Connecticut back to New York to be here with him daily it it really didn't mean like I had to give up that much because I was willing to do whatever it took to get him to this point that he's at right now.

Rebecca Solomon (09:18)
Well, you are

an incredible mom. We all see everything that you've done, your heart, your soul, your dedication, your patience, everything that you've done, at least at Blythedale, is just

Katherine Ingrasci (09:29)
Yeah.

Rebecca Solomon (09:29)
incredible. And those are some big decisions that you have to make as a mom of a medically complex child. And, you know, I'm sure you can attest to the fact that the team at Blythedale helped you through your journey. I mean, Jason, you've had so

Katherine Ingrasci (09:43)
Yeah.

Rebecca Solomon (09:44)
many different people working with you here at Blythedale, from PT.

OT, speech therapy. I mean the list goes on and on, and you had to put in the work to get to where you are right now. And we've seen those improvements throughout your time at Blythedale. What was it like having the whole team become a part of your daily life?

Katherine Ingrasci (10:04)
it feels more like another another family trying to work trying to work with me even though they're not they're not the same but they're just f they feel like family to me.

Rebecca Solomon (10:18)
Your family has grown since you've come to Blythedale, right?

Katherine Ingrasci (10:22)
Yeah.

Rebecca Solomon (10:22)
Well, I guess so Katie is what, one of your aunts now? Katie, you

Katie Ingrasci (10:27)
Ha ha ha.

Rebecca Solomon (10:29)
are you you've definitely formed a nice close relationship, as you do with your patients who you work with, but with Jason and his mom. And can you tell us a little bit about some of the changes that you saw in him from the beginning of his rehabilitation to where he is today?

Katie Ingrasci (10:45)
Sure. So Jason and I have been working together since his time when he was first admitted to Blythedale. He came in at a state where he really wasn't consistently responding to a lot of simulation. Will and I would go in often and provide lots of different simulation to see, you know, what Jason responded best to.

And then as he continued to heal and with time he started to come out of that state and started moving his eyes a little bit more and then sitting up a little bit straighter. and then we really that opened the door to a lot of different opportunities that we could try for communication, for voicing, for feeding, all different types of things. So

after a few months where Jason

still had his trach in, he was not speaking yet. So we had a period of time where we were trying a lot of assistive technology. So using his eyes to communicate with a screen in front of him with icons that would make the selection if he dwelled over a picture. We trialed things where he would scan different pictures with his right arm.

make selections through that. It was very clear that Jason's receptive language, so what he was understanding, was a strength when he had come out of that disorder of consciousness state, this state where he wasn't really responding to all sort of stimulation. He wasn't showing clear signs of communication. But when he started to, you know, he was there the whole time.

and we could tell. You know, you would look at him and if he he would say a million words with his eyes. and we just kind of kept chipping away and trying to find the best way to tap into him. and then when we were able to get voicing using a passy muir speaking valve, that was a a huge day where Jason then was able to

You know, he wasn't limited by a screen of what he wanted to say. He could tell us straight from what his we w he was thinking what he wanted to say. And then he took off and and started eating and he did a lot of different swallow studies here and just kinda kept progressing and progressing to then getting his G tube out, his trach out, fully verbal communicator, participating in school, participating on all of his therapies. I mean, now we're working on

academic goals to get him ready to go be a rock star in the classroom. so he has it has been tremendous to watch and to be a part of.

Rebecca Solomon (13:33)
And Will, when we talked months ago on our last podcast, we we know that every patient's outcome is different. So the same diagnosis doesn't mean that every patient is going to go through the same type of therapies or treatments or have the same outcomes. And that's just a fact. But when you see the success that

Jason has achieved, as Katie just mentioned, something, you know, as small as being able to communicate in ways that he wasn't when he first got to the hospital. What's that like for you? Like is this something describe what that's like for you in the work that you do.

Will Watson (14:11)
Yeah,

like Katie was describing, when Jason came to us, he was in a disorder of consciousness, which is as severe of a state as you can get with a brain injury. We're one of very few programs in the world that will take patients in this stage because there's so little that you can offer to help them progress. we take a lot of patients in this stage of recovery and many don't emerge

from the stage because the brain we just don't know how to heal the brain. Jason's injury was unique in certain ways and so he he did emerge the way Katie described. it was a couple of months though of us going in there and him not him barely responding to even just like loud sounds in his ears, maybe he would flutter his eyes and that was as much as we got from him. And then

when it was clear like he was moving his eyes to communicate, it was a it's a big moment because you see so many cases that come through that don't reach that milestone while they're with us and it and so I'm always kind of the team skeptic and as they were like, I think he's I think he understands and I was like I'll be the judge of this and sure enough, as soon as they we held up two objects and just a hundred percent accuracy, he's like looking at one, looking at the other, able to identify

different objects. So then we thought, well let's test the limits and we asked him yes or no questions, look at yes, look look at no. And just a hundred percent accuracy that first day. So this is not the typical profile. Typically there's like more of a slow, gradual, inconsistent kind of picture, but Jason just kinda clicked on, I think, because that pressure maybe released and his brain was more available. But so his length of stay is also way longer than most

people here and that has everything to do with the fact that as Katie was describing, as we started, his progress has just never slowed down. And he continued to it's like, well now what's possible? okay, I guess maybe we can do without this trach. Well maybe he can eat by himself too. I don't know. Maybe he can walk up the stairs and get into his house. And so typically a lot of those goals would have happened as an outpatient because of but in this unique situation Jason has just like continued to make such rapid gains that

we've continued to work with them here. But it's been very rewarding to get to watch each of these milestones as they come back on.

Rebecca Solomon (16:36)
Well, thank you for all you do, Will and Katie. You know, it's interesting in this situation and you really see it's it's a it's a success story. And yes, it's so complex because of everything that was involved with his diagnosis and one thing leading to the next, but it's almost like Will and Katie, you're taking your skills and what you do and you're taking Jason's cues that he's giving you and you're putting it to work. You literally are working hand in hand to

get him to where he needs to be. And it works both ways to have that success, right? There's only so much one side can do to get to a good place. And in this case, it's like, Jason, you were showing improvements on your end. And Will and Katie, you guys were running with that. And the team was running with that and using that as part of, you know, his therapy and getting him to where he is now. Jason, what's something your therapist worked on you, worked on with you?

that you remember thinking, you know, this is really hard, but you eventually got better at it.

Katherine Ingrasci (17:42)
Well, I would say it's more of the occupational side of me. That's like my my hands I thought I couldn't get to do anything with my hands again. Like like it's do stuff especially with the left hand again,

in talking I I didn't have the strength at first when I did this the speaking valve but when when after a while Katie taught me a way how to actually like to talk with like still like you pause but

it's practicing to talk for a very long time without pausing, which in since Katie taught me how to just stop and take a little little breath, then talk again, then it my talking got way, way better to the point that is now. I to I to actually bef when when I actually get the trach out, I had to go back to that to that little trick again 'cause when I talked I realized I

I could talk but not that long. I would have to take a breath or reset so I can talk again. So there was there was a little bit of some learning to with talking with with the trach or without the trach.

Rebecca Solomon (19:06)
Mm.

Katherine Ingrasci (19:07)
And then now it's like

really, really easy to talk. Like I would say like about about in a day I could talk normally fine without the trach or with the trach.

Rebecca Solomon (19:21)
That's great. Yeah, it's all the lessons that you're learning through your recovery. It's you probably never imagined at what, you're 17 now? That

Katherine Ingrasci (19:33)
Yeah.

Rebecca Solomon (19:34)
this you would have gone through all this at just 17 years old. Well, now that you can talk and we know you you like to talk and you talk well, what would you want to say to Katie and to Will and to all of your amazing therapists at at the hospital? What do you want to say to them?

Katherine Ingrasci (19:48)
Well I really wanna

say thank you because if they weren't there then I wouldn't come back like how I did 'cause like I said, I said to one of one of the OTs here Blythedale I said that if it wasn't for my old therapist, my old physical therapist,

it it was reteaching me how to stand up, at least just to stand up, not to hold it for very, very long, but it's just to practice to stand up the the action to do that. But

Rebecca Solomon (20:31)
Very thankful.

Katherine Ingrasci (20:33)
And also Katie reteach me how to actually eat properly 'cause my my my my throat it was I don't know, I think there was a little bit of some problems on my throat but then she was she was doing some exercises, like throat exercises

Katie Ingrasci (20:53)
Mm-hmm.

Katherine Ingrasci (20:54)
and

I I'm very thankful that I can eat again 'cause I that that was one of the concerns while I was in and out of conscience consciousness, if I can eat again or if I can't eat again. Like is is it gonna come back or is it just gonna be gone forever? And then also my hands I I I I faith in my hands coming back because

Like I I do I do so much stuff with my hands before I got sick, like

I I was like said like this this is like the easiest thing for me. But in it's actually the easiest 'cause in in occupational therapy now we I could kinda do whatever I want really that's occupational therapy wise because we we just gotta work on some little little fine like I think yeah the the fine motor skills and then my

hand fully come back and just you can just gain the strength too as well, which and that's why the walking walking part and like the stairs too is gonna be a good thing for that strength in my hand 'cause when I had the stroke the left side of my body actually got it it got way way weaker.

Rebecca Solomon (22:29)
You know, Jason, you're describing so much of what you went through and what happened to you. And Will and Katie, I'll have both of you chime in. Is this something that we see with this diagnosis? or is it because his case was so complex? Everything from relearning how to eat to moving the hands and continuing to work on that left side, is this I don't want to use the word normal, but is this typically what we see?

Will Watson (22:55)
The

parts of his brain that were injured, this does fit with that. So like I said that the brainstem area

is where a lot of things got crowded in his brain and maybe a lot of the pressure was. There's different pathways there. Obviously that's the pathway between your brain and your body. So the your brain's ability to send those motor signals to your throat, to your limbs, that's all in there. and then Jason, like you said, had some strokes in some areas that specifically made that left side weaker. And so these

Having a brain injury can affect just a variety of different cognitive, sensory and motor areas and he got quite a few of them affected. and so as we as you heard, we chipped away at each of them, sometimes figuring out a new way to do something. So like can we do like Katie was describing all kinds of varieties of different ways of communicating until now we don't need any of those. We're just talking. his OT worked with him on different ways of gaming and they did adaptive gaming

For a while and now he can play with a regular controller. he's in a power wheelchair right now, but as he described to you, he's getting back to where he's taking steps and walking up and down stairs. So along the way we always will find, let's get you functional, let's find this in-between step that can help you participate in the world, and maybe that's as far as it goes, and at least you can participate, or maybe we can push through and you can eat and talk and play games and walk up the stairs just like before.

Rebecca Solomon (24:31)
Thank you for explaining that, giving some clarity to all of this. And we're gonna get to the gaming in just a minute. But Katie, I'm curious to hear what your thoughts are regarding the feeding and the talking. I mean, these are, you know, necessities of life. And Jason, when he was aware of what was happening, he wanted to do that. He he had that drive. He wanted to eat again, he wanted to talk again without the assistance. but you had your work cut out for you.

Katie Ingrasci (24:59)
Yeah. I mean without Jason's hard work, you know, that that is why he is who he is that you see today. but those were certainly hard conversations, you know, and and I think that while Jason always showed progress each and every week,

we also had to look big picture and say, okay, what is this gonna look like? What what is safe for him to eat or drink right now? you know, how can he can we envision a life without the trach and without needing any sort of valve so that he can, you know, speak and breathe independently and and in a healthy way.

Jason was also a really great advocate for himself. he made sure that he understood his treatment plans. He asked questions when he didn't understand. He asked questions when he wanted to learn more.

And I think that that helped a lot with Bay-in too. He was such a hard worker. And the more that he understood anything we tell Jason to do, he does with 110%. and you know, he was following our plan just as closely as I was, and he knew when his swallow studies were ready and he knew what exercises and different consistencies we were trying and all the different things to look for and the objective studies.

so, you know, while it comes with hard conversations, Jason had a lot of amazing perseverance, patience. I think that he understood early on that, you know, good things take time and and in in that waiting and still working hard but going slowly and safely, he was able to come out on top.

Rebecca Solomon (26:50)
So nicely put and really a really important message from this episode is you have to be your own advocate in whatever way that looks. There's no right or wrong way of how to be, you know, should say there's no right way of being an advocate. It's just, you know, pushing for what you want. And that pace is gonna be different for everyone. But you have done that, Jason. So kudos to you.

It's almost like you're playing your own video game, right? Of your own

life. We know you're a gamer and you love that. if

Katie Ingrasci (27:16)
Mm-hmm.

Katherine Ingrasci (27:18)
Yeah.

Rebecca Solomon (27:19)
your hospital journey were a video game, what would that game be called and what level are you on right now?

Katherine Ingrasci (27:28)
Well, what game would it be called? It would be called like rising up, I think, yeah. Cause we I I was I was at the bottom and then now I'm in like I like I said to mom w I think

when when I was like back in the my pod I said this is like chapter three 'cause even though I'm gonna leave here there's still gonna be this like Yale said there's still gonna be like two more years of therapy or more.

So this is like this is still like kinda the beginning going into middle part and then when close to those two years being up then it's the end.

Rebecca Solomon (28:25)
I wanna buy into this video game. You're

we know it's all going to be exciting when you get to your next chapter, but there's also a lot of work that needs to still go into it. And and Shari Ann I am sure you have a lot of emotions as you head home. And it's

very exciting, but it also comes with a lot of ongoing care. What are you feeling as discharge

Katherine Ingrasci (28:48)
Yeah.

Rebecca Solomon (28:49)
gets closer?

Katherine Ingrasci (28:51)
Yeah, it's kind of like I would say like

Figure what the next chapter is gonna look like, what here at home is gonna look like. It's not gonna be the same as it used to be, but it's gonna be a lot more complicated. I'll still have family and everybody there at support and everything to be there with me throughout the rest of the journey, but it's not gonna be easy, but I'll get through it.

Rebecca Solomon (29:24)
And you will. You are a fighter, so every sense of the word. And you've learned a lot through our parent-family education program

Katherine Ingrasci (29:29)
Yeah. Yeah.

Rebecca Solomon (29:33)
at Blythedale how to care for Jason when you're both home as well. And so you've put in the work as well. And kudos to you. So we'll miss seeing your

Katherine Ingrasci (29:41)
Thank you.

Rebecca Solomon (29:42)
face around here, but we know it's very exciting that you're heading home. Absolutely.

Katherine Ingrasci (29:46)
Yeah.

Rebecca Solomon (29:47)
All right. So to the medical team, what does this next chapter look like for him? What are the most important things

His family will be working on once they're home. Do we even know that yet?

Will Watson (29:58)
I really like the way Jason framed it to say that the next it's a next chapter and it's a new beginning because while he has been here for a while and accomplished so much, there's I think the recognition that there's a long road still ahead is a really important one.

The big changes are you're no longer under our constant watch. And so there's that advocacy that Katie talked about, that Jason showed here, will be even more important there because he's gonna need to keep pushing himself to get up and get out of the house every day and go use all these skills that he's got and and continue to progress. We see sometimes kids make a lot of progress here and go home and then

don't make so much progress and other kids that go home and like go get to it and and make a lot of do all kinds of things in the future and so I hear all of Jason's big goals and I'm excited to see him push for those once he gets out of here. But it's gonna be a lot of work for both Jason and his mom and that whole team of support that they described. but they've shown every step of the way that they've got it in

Rebecca Solomon (31:12)
True. Katie, anything you want to add?

Katie Ingrasci (31:16)
Yeah, I always get excited when it comes around the time of just discharge just because we we can only simulate so much here, right? So Jason has gotten to this point of a a graduation from the walls of Blythedale and he's learned to be functional and successful and really thrive in this setting. And I think that this next chapter that everybody is talking about is also a a big learning.

period where you may prepare for an experience that you have that we can't create in the hospital.

and we can't create every scenario for preparation. We can only build the skills and continue to strengthen them. And then now it's up to Jason and his family to go out and use those skills and see what worked, see what didn't, see what n needs a little more fine tuning. and that's why you'll often see a lot of patients post discharge continue their therapies and getting additional supports in schools to make sure that those skills are

continuing to to strengthen over time and in a variety of contexts. So it's so exciting right now because you know he's he's limitless in the things that he's gonna go experience. and now it's just a matter of okay how do how does Jason succeed you know as this person in front of us outside of these walls.

Rebecca Solomon (32:40)
Yeah.

Katie Ingrasci (32:41)
and and I'm excited for chapter four Jason. I'm definitely gonna read it

Will Watson (32:46)
Hmm.

Rebecca Solomon (32:46)
Yeah.

We all we all want

Katherine Ingrasci (32:47)
Ha ha ha.

Rebecca Solomon (32:48)
to be a part of it. It's great.

Katie Ingrasci (32:49)
Yeah.

Rebecca Solomon (32:50)
Jason, what would you say to another teenager who's in the hospital right now, and it doesn't have to be Blythedale, it can be any hospital, and wondering if these things are ever going to get better. What would you say to that other teenager?

Katherine Ingrasci (33:04)
I always say I would say that it that they they they would overcome it one day. Not not now but one day. Like as like as one of my therapists says, my physical therapist, he always say not yet. But soon.

Rebecca Solomon (33:29)
It's a great message. Not everything has to be now. That would be too easy, right? You'd win that game, level one. We don't want that. Gotta have the challenge. And and and Jason, is there anything else? Is there anything you'd like to say to your mom while she's sitting right next to you on this podcast?

Katherine Ingrasci (33:49)
Well, I say like I say that I love I love what my mom did for me over

she knows how to walk with me and she knows how to do the stairs with me. So and she knows how to how to help me and to to like help me in like the best the best best way 'cause she'll she'll ask if like there's something wrong or if I say that well while she's gone

there's like something wrong here then she'll she'll ask questions to every everybody like in the in the medical team like what what what's going on and whatnot. And yeah.

Rebecca Solomon (34:35)
She's doing her job too as a mom, right? Shari Ann? Anything else you

Katherine Ingrasci (34:38)
She's doing, she's doing like.

Rebecca Solomon (34:40)
wanna add?

Is there anything else you'd like to add, Shari Ann?

Katherine Ingrasci (34:48)
no, not really. He said it all pretty much. Yeah, he is good at that.

Rebecca Solomon (34:52)
He he's good at that, right?

Well, thank you all so much. This was a really important conversation to have, and it has so many different messages. And we could go on and on, but I think for now this is a great, a really great conversation. I appreciate everyone's time. And I do just have one more question I'd like to ask everyone. Will, I know you've answered this before on my my last podcast, but maybe your answer is gonna look a little different today. How would

Each of you describe the meaning of hope. And maybe we'll let's start, let's start with you, Jason.

Katherine Ingrasci (35:31)
you would pray that

Something would get way better like like w walking, moving your hands and eating and and everything, even even like breathing, you would you would think or want it to be better. That's what hopes mean. Yeah.

Rebecca Solomon (35:52)
Yeah. Keep praying, holding on to hope. Absolutely. And

Katie, let's go to you next. How would you describe the meaning of hope?

Katie Ingrasci (36:03)
I would say that hope

means, you know, it isn't over yet. You know, we just we don't know and we gotta reach for the stars and keep going and hope there's just so much opportunity.

Rebecca Solomon (36:17)
Great. Will

Will Watson (36:19)
I think my answer will probably be similar to what I said before, but I think Jason embodies it perfectly, which is that when you have when you lose all these functions because of an injury or an illness, there's no guarantees about what you'll get back. And to continue to push and see along the way, things might look different. So each of these different steps, like Jason was saying, he didn't know if he was gonna eat again, he didn't know if he could get back to walking, like none of us knew that.

That's actually we we didn't think that was possible. And so just because he defied all the odds, but at any one of these steps we could that could have been it. It could have been power mobility, it could have been communicating using a device, and he would have gone on and been a really functional human and had a great life. so you you do what you can with what you have. You push yourself to try to do as much and if

The if life has in store for you to gain even more function then you push yourself to keep going as far as you can go.

Rebecca Solomon (37:21)
Amazing. Thank you. And Shari Ann

Katherine Ingrasci (37:25)
I would say hope is like a journey. You don't know what you're actually gonna get, but once you do get there you'll know what that journey looks like.

Rebecca Solomon (37:39)
Beautifully put. I love that. Quotes all around.

Katherine Ingrasci (37:41)
Yeah.

Rebecca Solomon (37:42)
Thank you so much, Shari Ann and Katie and Will and Jason, especially you, for being so open and transparent on your journey. And we all wish you the best of luck as you enter level four.

Katherine Ingrasci (37:56)
Okay, chapter four.

Rebecca Solomon (37:58)
Chapter four. my gosh, I know. I need to get into my gaming better. Okay, chapter four, best

Katie Ingrasci (37:58)
Ha ha.

Will Watson (37:59)
Okay.

Rebecca Solomon (38:03)
of luck. thank you all so much. We hope you enjoyed listening to this episode of Journeys of Hope. If you have ideas for future topics, we'd love to hear from you. Podcast at Blythedale.org. And don't forget to subscribe to our podcast and like and follow us on social media. Thank you so much, and we will see you next time.