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106. Education and Awareness About the Disabled Community- with Rosalie Mastaler
76 Plays3 years ago
Rosalie Mastaler is a writer, musician, crafter, mother, wife and passionate advocate.
Her online presence, with her son Hunter, is full of humor, education about the disabled community and finding joy in the journey.
She has been featured on Erik Weihenmayer’s website for living a “No Barriers” life. Was awarded “Woman of the Year”, by her local assemblyman in Southern California, for community service through musical performance and advocacy. She is highly active within the amputee and disabled community, attending multiple events and camps throughout the year with her son. Whether it’s in person, or social media, she loves to connect with other families and amputees.
She is currently working on publishing children’s books that feature people with disabilities. Along with her publishing venture, she is always on the hunt and sharing about books that encourage positive disability representation. Her goal is to spread awareness through literature.
For many years, she could be found on stage throughout Southern California with a 1940’s tribute group, at her local community theater, and at Disneyland Resort every Christmas in the Candlelight Processional.
She cherishes her faith and commitment to The Church of Jesus Christ of Latter Day Saints.
She currently reside in Central Texas in a home filled with toy cars, LEGO bricks and lots of noise as she raises three young boys with her high school sweetheart, Michael, her husband of fifteen years.
Contact Rosalie Mastaler:
http;//Www.RosalieMastaler.com
http://www.instagram.com/mastalerpartyof5
Connect with Kendra Rinaldi:
http;//www.griefgratitudeandthegrayinbetween.com
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Transcript
Introduction to Privacy and Respect for Disabled Individuals
00:00:00
Speaker
Just because someone has a disability doesn't mean they owe everyone around them what their story is. They don't have to answer to people. And I feel like in this day and age of, oh, we need to be polite. We need to be nice. And there's the coined term of a nice disabled person. Oh, let me answer all your questions. But then, shouldn't they be able to live their life how we do? They already live their life so differently. So why do they have to answer people's curiosities? They're not a curiosity.
00:00:29
Speaker
That was back when they had freak shows. Hunter would have been a part of a freak show back in the day when they had these freak shows and they were considered curiosities. That is not what they are. If you want to educate yourself, there are many ways to do that, besides asking my kid when he walks into an ice cream shop.
Introduction to the Podcast and Guest
00:00:49
Speaker
Hello and welcome to Grief, Gratitude and the Gray in Between podcast.
00:00:57
Speaker
This podcast is about exploring the grief that occurs at different times in our lives in which we have had major changes and transitions that literally shake us to the core and make us experience grief.
00:01:13
Speaker
I created this podcast for people to feel a little less hopeless and alone in their own grief process as they hear the stories of others who have had similar journeys. I'm Kendra Rinaldi, your host. Now, let's dive right in to today's episode. Thanks for joining us today. Today I have Rosalie
00:01:42
Speaker
Mass Taylor. Yes. Yeah. You got it. It's funny because right before I started recording, I asked Rosalie how to pronounce her last name, said I wouldn't mess up on that. And then I started recording and I messed up on the first on her first name. And then here we are recording again. And now OK, I nailed it with a little hesitation. I nailed it.
00:02:07
Speaker
Rosalie is a writer, she's a musician, a crafter, a mother, a wife, and a passionate advocate.
Storytelling in Advocacy and Personal Background
00:02:14
Speaker
And we'll be talking about all of these different roles that she has, but specifically a lot of our conversation is going to be around the aspect of being an advocate of educating people regarding the disabled community and finding joy in that journey. So welcome, Rosalie.
00:02:35
Speaker
Thank you, Kendra. I'm so happy to be here and just to be able to share a message and to widen our platform. I'm always grateful for that opportunity. All that aspect of widening platform, it's so important because I was even talking with some friends of these aspects of cross marketing, quote unquote, of just really like the different people that we know and that reaching out this other public and other people that
00:03:02
Speaker
that need to hear this, right? So any, any opportunity that we have in order to share our story, where even if it's one person listening ends up having this connection or feels related, you know, that they relate to your story, then that already right there has been mission accomplished kind of thing. So before we started recording, we were talking about the weather right now. We're recording in January, of course. Oh, February. What am I saying?
00:03:29
Speaker
Oh, gosh, February here. It's already almost almost March. And when you guys listen to this, probably down, you know, further down the line, further down the line because of the editing time that takes. But we were we were talking about the weather because we're.
00:03:45
Speaker
dealing with the same weather. We're both in Texas. So let's talk about that. You mentioned you just recently moved to Texas, or at least to the Austin area. So let's talk about your life a little bit. Tell me about your family dynamics and how it is you guys ended up in.
00:04:02
Speaker
Yeah, so I'm born and raised in California. So I feel like a California girl through and through because I live there up until only three years ago. So my whole life has been spent in Southern California basically.
00:04:17
Speaker
Almost in one town. Okay. Well, I grew up in Apple Valley, which is a little town in San Bernardino County. That's where I met my husband. And we were high school sweethearts and we got married young. We were just babies, 21 years old. And we didn't have our first child until a few years later. I was 25 when I had Hunter, who I know we'll talk a lot more about. And then I have two boys younger than him, ages eight.
00:04:47
Speaker
and four and yeah and we brought out to texas my husband had a career change he was in law enforcement for about a decade a little over a decade and then he switched careers to aviation and he's now running a flight school here in texas we're just north of austin
00:05:03
Speaker
Oh, I'm gonna have to get your number. My husband loves to do those games, the He Flies, you know, on his computer. Yeah, even for his birthday, I thought I gave him I gave him a card and it said this or that, like, you could choose one of these gifts, either like a, you know, a session, like a flight, you know, session, like a real one, or, or like this grill thing that he won. So he picked the grill for now, which I was kind of glad because there's some
00:05:29
Speaker
Nervousness I get to the idea of actually so I could imagine was that for you to the fact that he is There are some nerves especially if the weather is bad I think that there was one time a storm was coming in and I knew he was flying that day and I was really nervous But honestly compared to police work, it's like nothing so I mean, there's still definitely some nerves with it and
00:05:54
Speaker
I haven't flown with him yet. I just have some anxiety with that. I think just with everything we've gone through. I was like, there's no way that both of us can go down. Like our children need at least one parent. So I used to, I have a lot of nerves with that. So I haven't flown yet. He's flown, flown his dad and one of our sons and yeah, he's, he's enjoying it.
Parenthood and Coping with Loss
00:06:15
Speaker
That's awesome. Okay. So then you have the three, three boys then. So it's Hunter. And then who, what are the names of your other two? Cade and Logan. Oh, beautiful. Cade with a K or with a C? A C as different. I need to see it. Oh really? Tell me, what is the C? So with the C, cause we always look at the meanings of names with the C, it means a spirit of battle. So, and he's a feisty little guy, so it totally fits him.
00:06:41
Speaker
That's awesome. I know I love names and meanings. And even before I had kids, I would just look at name books. I just liked looking about that. So that's awesome. Now, for you then, being that you're an artist as well, a crafter, what kind of crafts do you do? You're a musician. Tell us about that. What are these artistic expressions that you have? How do you express these?
00:07:07
Speaker
Yeah, I just love to create like I just love to make things and right now I've you know my biggest crafting is storytelling with being a writer.
00:07:19
Speaker
I feel like I've dabbled in so much. Like I went through like a scrapbooking period where I would make these super elaborate scrapbooks with like so many embellishments and pictures. And then I would make, I had a fundraiser for Hunter called wreaths for Hunter that I'm still kind of doing, but I would make these really beautiful floral wreaths. Um, anything that I can do to create, whether it's writing music or storytelling or, uh, anything, I just love doing it. I just have, my mind is just always wanting to create.
00:07:49
Speaker
in the artistic space. Yeah, that's kind of where my juices kind of flow as well in that, not in the tactile way. I mean, my artistic expression is even this, you know, a podcast or I studied theater. So that's kind of where it flows.
00:08:04
Speaker
Now let's talk about then when you guys started your family and be getting you know expecting Hunter like how did how was it when you guys started your family and the That journey of parenthood 11 years ago yeah, um yeah, just thinking about it just makes me so happy because I I knew I always wanted to be a mom. I knew I always wanted that to be a
00:08:32
Speaker
just like the the biggest part of my life I'm a stay-at-home mom and I wouldn't have it any other way I mean I do have a lot of side projects and I do I do teach music on the side and so I definitely stay busy outside of motherhood but it's I was always my dream to be a stay-at-home mom and
00:08:52
Speaker
It took us a little bit to get pregnant with Hunter. It took us about a year, which in the long run a year isn't that long. But when you're like, I'm ready, I'm ready to be a mom right now. I feel like every month that that cycle comes, it's like a little bit. That's a grief journey itself.
00:09:09
Speaker
I know I was telling a friend too I'm like that it's like I can't even imagine like even people that go through like adoption process or any of these other things that also like there's this aspect of grief every single time like every month oh man it didn't happen this month you know like with you know being pregnant so I can relate to that as well man yeah so so a year felt like an eternity be yeah yeah
00:09:32
Speaker
And when we finally got pregnant, I was just so excited. I had a great pregnancy and labor was pretty average and we gave birth to our first son and that was Hunter. And man, I just, I loved it. I loved every aspect of it. And we knew that we wanted our kids to be somewhat close. I'm like, let's shoot for two years apart. We didn't know exactly how many we wanted.
00:09:59
Speaker
Michael comes from a family of four and I come from a family of two. And so I was like, I don't, four seems kind of big and two's too small. We ended up meeting in the middle. Michael didn't want three at first, but it was, that was a journey too. But so I got pregnant when my son was just, they would have been exactly two years apart. And then we found out about almost halfway through the pregnancy that she wasn't going to make it.
00:10:26
Speaker
And that was one of my very first experiences having very, very deep grief, which is what I really feel like prepared me for what we went through with my Sunhunter.
Hunter's Accident and Family Response
00:10:41
Speaker
Okay. Sorry to hear about your, your daughter. Yeah. Um, then with what, what was, how old was Hunter or what, when you, what, what happened then? What is his disability or what is it? I don't even know that part. Can you believe? Yeah. Yeah. So when he was four.
00:11:02
Speaker
And so, yeah, so we had lost the baby and then I had my second boy. And then when my second boy was about a little, a little over 18 months, so he was still a toddler, my son got in an accident and he, our dog attacked him. It was our police dog at the time. And it was so bad that they ended up having to amputate his leg.
00:11:33
Speaker
So that just, I mean, it changed our lives. Oh, I'm following your son on Instagram. I'm following your account. Yeah. I am. I'm like, now that I'm like, wait a minute, I am. He is so, you guys do a whole little TikTok videos and those kinds of things, right? Yeah. All the time. Yes. We just made one this morning. Okay. Wait, I'm like, as you're saying, I'm like, wait. And as you were talking, I'm like, I wonder if that's what I'm following, but you see, I didn't even put two and two together as I'm like. That says.
00:12:00
Speaker
What's his ID account? What is the ID account that you guys are? It's my last name. It's Mass Taylor party of five and the number the number five. OK, OK. So how so he this happens. I can't even imagine because.
00:12:20
Speaker
The I have two dogs myself. So that part of even just the grieving your even the component of this other, you know, being that was in your home. Yeah, to that. So can you kind of take us through through that and the emotional component of having that occur? Yeah.
00:12:44
Speaker
Regarding regarding specifically the dog or yeah, so the dog he wasn't a family dog. He was a working dog He was he was a police dog. He lived with us and that was about it. There were very very strict rules and He was my husband's partner and that was about it we I mean he was there and we had to just
00:13:08
Speaker
he was a working dog he wouldn't be in the home with us he would just make a short trek from his kennel which was outside straight to the police unit but he had lived with us for a year so he was definitely a part of the home just not in a sense of like a family dog
00:13:25
Speaker
Got it. Got it. Okay. So you go into the hospital. Was it something immediate that you knew that that was going to be the case that he was going to lose his, his leg was going to be amputated or was it a process of nerves not working? What was that journey? So for me, um, I wasn't home when it happened. So I didn't see, I didn't see the condition of his leg right away. Um,
00:13:54
Speaker
And so when my husband called me and told me what happened, he didn't give me any specifics. He just said, Django bit Hunter, get home right now. And in my mind, I'm thinking, okay, it was probably a little snap. He probably just needs stitches. Like literally in my mind, that is what I'm thinking. And
00:14:16
Speaker
We had to go back and forth a little bit with phone calls. And then finally, I hear some people in the background and I was like, who is with you? Like, why are there people at our house? And it was, he's like, it's the paramedics, Rosalie, they're here, they're taking care of Hunter. And I'm like, wait a second. No, it can't be that bad that you had to call 911 and there are now, it's an emergency. And he,
00:14:43
Speaker
And then I heard him say, he goes, where are you landing the bird? And that's when I knew that they were lifelighting him to the hospital. And that's when I started to panic because I knew my child's life is in danger. I don't know how bad it is. I just know that this dog was a very powerful dog who was trained to bite.
00:15:07
Speaker
my son is now his life is in danger. So I get to the airport as soon as possible. And that my husband, he ran up to the truck basically right away before I even got to Hunter. And I have never seen him look how he looked in that moment, just so much.
00:15:30
Speaker
pain and guilt and suffering and devastation and I just remember like holding his face and just telling him that I loved him and I wasn't gonna blame him and and then I got to Hunter right away and we took the helicopter to the hospital. At that point still
00:15:50
Speaker
I felt like this is going to get fixed. Like we are in 2015, our medical technology is the best it's ever been. And this is going to get fixed. They're going to do whatever they can to fix him. And he's going to be healed. And we're going to walk out of that hospital like nothing happened. And like in my mind, I don't feel like I was being irrational. I just felt like I had so much hope and so much faith that that's what was going to happen. I was going to be granted a miracle.
00:16:20
Speaker
And we rushed to the hospital, and I'm just standing there as they're working on him. And I knew they were going to have to get him into surgery. And I hadn't really seen the leg at that point, because by the time I got to him, he was all bandaged up, for the most part. And then one of the surgeons called me over, or like an intern, so I could sign the consent form. And he's going through everything. And everything just sounds like gibberish.
00:16:49
Speaker
I don't remember anything he said, he's just going down, okay, we're gonna do this, this, this, and this. I'm like, okay, I don't care what you're gonna do, just do it and fix my son. Just get him in surgery, put him in a cast, fix his bones, like this is gonna be fine. And then at the bottom of the consent form he says, and if it comes down to it, we're gonna amputate his leg. And they had to catch me, I almost fell over. And then they sat me down, and I just remember squealing my name and just thinking,
00:17:18
Speaker
There's no way that it's going to come to that. There's no way my son is going to lose a part of his body. And to this day, obviously, like that part just always, I just remember being so hopeful. And so they didn't amputate his leg right away. They rushed him into surgery and they put some pins in his bones.
00:17:39
Speaker
and a big contraption around it and but they told us you know what happens with pediatric veins is they have an elasticity to them which actually saved his life because when that dog was ripping at his leg basically those veins closed up and those arteries closed up so he didn't bleed out
00:18:01
Speaker
But because they closed up, the blood flow was not able to return. And after three days of hoping the blood flow would return, I just remember they checked it every hour. They would check for a pulse on the bottom of the foot.
00:18:16
Speaker
I just remember every hour just being so intent and listening, please be a pulse, please be a pulse. We would just listen, listen, listen. And then it just never came. And by the third day, his foot was black and blue.
Community Support and Healing
00:18:28
Speaker
And that's when we knew it's part of his legs. Got to go.
00:18:36
Speaker
wow i just i just i'm seeing all this movie playing in my in my head as you're describing all this like it's like reliving it through you as you're sharing you know uh even though i didn't live it it's like i kind of imagined the
00:18:55
Speaker
type of emotions that come up. And how did you tell him or did the doctors explain to him when that decision was made? Reminded he was for you, you said? Yeah, he was four years before. How do you explain to a four year old that process of what's coming? And was it you? So there was no, there was no preparing him because he was in so much pain.
00:19:23
Speaker
They had to semi sedate him So it was the matter of him going off to surgery and then him waking up and his leg being gone So there wasn't a way that we could prepare him. I mean we could have tried but I Used my best judgment. I'm like he's not gonna he's not gonna be able to
00:19:45
Speaker
rationalized at that moment. He never seen someone without a limb. So how is he going to process that? So he wakes up and he was pretty loopy and we took him to his bed and it was just like, okay, when do we tell him? We were just trying to keep him comfortable and he didn't really figure it out until we lifted him up and he saw it himself.
00:20:13
Speaker
And looking back, I mean, there's all the, what I should have could have is, we maybe could have talked with him, but Hunter wasn't not a very conversational child. He just wasn't. He loved to play. He was very noisy. He was very loud, but we didn't, vocabulary was not his strong suit. And so I just felt like we're just going to kind of let this play out.
00:20:42
Speaker
And you know, he was our first child too. We weren't like the best at communicating. So I don't feel like we made a mistake, but he finally saw it. And that's when he's just started screaming like my foot, my foot, where's my foot? And we just calmed him down. And even then it took days and months and months for him to finally realize my leg is never coming back.
00:21:07
Speaker
Hmm did he have those like phantom pains that they say a lot people have a Limb right luckily because he was so young I think that is a big problem with either older children or adults because their body It's just you know those wires are just so much stronger So he did not have those issues. Thank goodness. The pain wasn't bad I
00:21:33
Speaker
I feel like he was able to heal physically very quickly. Mentally and emotionally was the very long process. Oh, yeah. I couldn't. Okay. So this happens. You're already at that point. Yeah. You just had two, right? Your mom too. Your youngest was just less than two years old. Yeah. Yeah.
00:21:58
Speaker
less than two years old, you're now not only having to help your little one who is probably just early Walker. Now you have your four year old who is now also needing now help with getting around. How did you all juggle all this like the emotions plus the doing like it is just
00:22:22
Speaker
How did you have family around? Let's go and let you say more specifically, what were the tools or who were your people? Who was that tribe around you supporting you as a family?
00:22:39
Speaker
Yeah, I would say immediately. Luckily, my mom and Michael's mom are both nurses. So when it came to him coming home from the hospital because it was a dog bite, there was infection, like he had to still have a lot of medicine and he had like a pic line in.
00:22:54
Speaker
for those who don't know it's basically like almost like an IV running like I think close to the heart I'm not entirely sure but it's a way for us to administer medicine through in a sense like an IV from home and so luckily I don't do all that stuff my mom's with my mom is she was called to be a nurse Michael's mom was there that's their calling in life and so they helped to kind of nurse him back to health medical wise I had a really good friend who actually when we went to the hospital I
00:23:24
Speaker
Initially, um, she took my son and she, um, it was between her and another friend, but she took him right away. And she basically was his mom for that time when we were in the hospital, because I could not, I couldn't do it. I could not be a mom to two at the time. And I had to accept that because I needed to be there for Hunter. And luckily I knew my friends were going to step up and be able to offer the love to my son that I couldn't give at the time and the attention and the infection.
00:23:53
Speaker
Affection and so they did that And then further down the road we ended up having this community that I never ever in my life thought I would have which is the amputee and disabled community and it wasn't until We connected with them his accident happened in February who that to our first camp in June and it wasn't until I connected with them that everything started to feel like
00:24:22
Speaker
that we could do it. We can do this. We can handle all of this. And honestly, you don't realize what you can do until you have to do it. And if you ask me that question, how do you do it? I almost want to be like, I don't know. I don't entirely know. I just know that there is all these little things, but I would definitely say the community part of it. And also the community part that supported Hunter
00:24:47
Speaker
is what helped so much because if I could feel, if I knew that he had the support he needed, then that would help me to know he's going to be okay. He is okay. And it's because of this community that I am introducing him to and offering to him.
00:25:03
Speaker
that is that is so true what you said a couple things that yeah bring really true to me community is huge right community support um i just did an event not long ago and i was talking about like when we're going through changes in our life like one of the things that's so important is finding community and if we don't have it in our own circle
00:25:21
Speaker
is reaching out to others that we can relate to what we're going through because it's so important to feel heard and seen and to know somebody else that's gone through that. So that's so great that you had those resources.
00:25:38
Speaker
Now, the fact of course that you used your family stepped in, your mom and your mother-in-law to help you out, and then your friends as a resource, you also knowing and realizing the parts that you knew at that moment you were not going to be able to do 100%, which was like, is it Cade, right? Cade's the middle one? Yeah, Cade. Okay, so taking care of Cade,
00:26:05
Speaker
And kind of assigning that somebody else for those you know a few months as or you know weeks or whatever it was that in that moment as you're trying to Realizing that takes a lot of courage to do a lot of courage to do and realizing where we are and
00:26:22
Speaker
lacking kind of or things we can't do in order to assign somebody else to do well we're in that so kudos to you for that and like you said you don't know how you did it but you did it like those were just the decisions you kind of went along you probably didn't even rationalize that you were doing that but that takes a lot
00:26:42
Speaker
Now, let's talk about his process of also then, you know, getting then prosthetics, that that whole journey of being able to learn how to walk with with a prosthetic and that journey. And then how because of what I see on Instagram, this is that that energy boy that you mentioned that he was that maybe not the best communicator, but definitely energetic and joy. That's what I see in these videos. Very inspiring.
00:27:11
Speaker
Uh, joyful child. So four years of this journey for him. No, eight years of this journey. Yeah. So we just had, um, actually, yeah, it's been 2015 and we just celebrated on February 8th. So just a few weeks ago.
00:27:29
Speaker
We call it his alive day. And so the anniversary of the accident, we let him pick whatever he wants for dinner and I have a cake for him and we kind of reminisce and it's looked different every year. Every year, you know, sometimes we'll bring up different things and
00:27:45
Speaker
some years he's needed more encouragement of like hey this is your life you know i went what are you grateful for and some days some years it's like cool this is it and we're just casually doing it um the first the first year was definitely really tough um and then i feel like it leveled out
00:28:04
Speaker
And then we, he got a little older and more aware of how different he was. And that's when it got hard again. Um, and that's where we really had to teach him to communicate so that he could express his feelings because he was expressing them in ways that weren't healthy. There was a lot of anger and he would pull out his hair and there was a lot of anxiety. Um, he was about seven ish when he kind of, when we kind of went downhill. Um,
00:28:34
Speaker
Right after the accident, you know, like I had said that it took him a long time to process the leg being gone. That whole, that whole process was very excruciating because it just felt like he thought his leg was going to come back. And he would ask me like, Mommy, can we go to the hospital? Can we go to the backyard?
00:28:59
Speaker
He just went in his leg back and I couldn't give it to him, which was very, very just, it was just, like I said, it was excruciating. And there were times when we would just hold each other and just cry and cry and cry. And I mean, there was one point where he even said, like, why did God let this happen?
00:29:16
Speaker
i would rather be dead than have lost my leg and of course he does not even realize what he's saying but in his little mind that's where his that's where he was and um so to get him through that was just a lot of
00:29:30
Speaker
I'm going to let you feel and I'm going to feel with you. And we're just going to push forward. And like I said, it took a few months that he finally met his community. And that's when I was like, okay, I'm able to see that these kids are okay. And I just have to keep supporting him through this. And it took him quite some time to accept his prosthetic leg. It took eight months from the time he lost his leg to the time he took his first step.
00:29:57
Speaker
And though it was a very long eight months, he hated his prosthetic leg. We even saw like this world-renowned prosthetist, and he was so good with kids. And he's like, hey, can you just put your leg on? And he just would just freak out. And he was like, oh my gosh. And so he's like, just put it away. Just put it away.
00:30:16
Speaker
this kid for some reason is just hating. It's almost like he didn't want to accept this new life and that prosthetic leg meant my leg's never coming back. I don't want to accept it. And the more that I fight it, maybe I will get my old life back.
Sharing Journey and Advocacy Work
00:30:30
Speaker
And it's just a long process.
00:30:33
Speaker
Well, yeah, because it's as if he did put it on. It was already accepting the reality of it. And and that was like hard for him. Thank you for sharing that that journey, because, yeah, it's not that we talk about all this aspect and you even said it in the bio, you know, that you sent me, you know, navigating this and joy in finding joy in the journey. But that takes there's a lot of
00:31:01
Speaker
ugliness in the middle, a lot of hardship and so forth that doesn't just happen like that. And a lot of times when we see someone's life, we just see that moment and that present and we don't realize how much has gone through to get them to where they are.
00:31:18
Speaker
yeah just how far just like truly how far he's come and like you said we started making videos um it's been just a little over a year and a half that we really started making videos and i feel like he had to get to a point where he was confident enough for it and
00:31:37
Speaker
And it all kind of started because I started this writing journey of being at this point of healing to where I felt like I can write our journey now because I've gotten more to the other side. I've been through some healing.
00:31:52
Speaker
are recovered and so I started writing our story as a memoir and then once I was done with that it was like okay well you need a platform if you want to even try and sell this memoir I was like okay well what the heck is a platform and so I started diving into that and I was like oh it's basically like TikTok and so that was right around the time Instagram started
00:32:14
Speaker
rolling out their version of TikTok and their videos I was like okay we can do this and it took some time for us to like figure out what do we want to share but we finally got to the point where like I'm like what can I offer my audience what can I teach them what is going to help them
00:32:31
Speaker
what is going to bring the most awareness and that's when it really started to take off. The video that really took took off was of Hunter stepping on Legos and he said we give credit to Hunter Woodhall who is kind of a famous Paralympian who's an amputee. He said oh my next video I'm going to make I'm going to be stepping on Legos
00:32:51
Speaker
And I was like, Hunter, we've got to do this before him, and we've got to show him. And so we made this really quick video. It took like 30 seconds to make. And he's like, I'm missing my leg. No big deal. Watch this. And then he steps on Legos, and it went viral. And I was like, oh my gosh, people love this. People love seeing that, oh, he's missing his leg, but he's making something funny out of it. So we try and do that and bring a lot of humor into it and a lot of joy. And now he's just so confident with it. And it's so amazing.
00:33:20
Speaker
to see people reach out to me and say, I'm learning so much from you. And like you said, even one person, I posted a video the other day about how I prayed for a miracle and I didn't get it because I prayed Hunter's leg would be saved. And someone wrote on there. I needed to hear that today. I was like, I wouldn't care if that was the only comment on there or if it was one view.
00:33:40
Speaker
That was worth it. That was worth it. And so that's where we are today. That's where you are today. And you know, that aspect of praying for a miracle, sometimes too, we think that what we want, and I know because even from your bio that religion and spirituality and faith are a big part of your life, that we think that what it is we want and the miracle we're praying for is going to be answered in that way. And that what is not answered in that way is as if it was not answered.
00:34:08
Speaker
Yeah, yet somehow the universe and life starts showing us that it actually was answered just not we just didn't see it like when it Was just the fact that he is alive already is a miracle in itself But it's hard to see those things in that in that in that moment right in the thick of it Yeah, cuz things with perspective. Yeah, right cuz who wants
00:34:31
Speaker
I mean, who would pray for anything different, to be honest? What mother would pray for anything different than for their child to not lose their leg? And it was a big lesson for me to learn about prayer and about faith. And I had heard, do you have enough faith to ask for a miracle, but do you have enough faith if you don't get that miracle?
00:34:54
Speaker
And that was where I felt like there was a miracle too that I didn't lose my faith and that I was still able to
00:35:02
Speaker
Trust in god enough to know That this was our journey that this was our plan and now seeing where we're at today. I wouldn't change anything Um when there's bad days, of course i'm like, man, that sucks. I wish she didn't have to lose his leg, but there's so much good And our late our lives with how they look right now. I mean They wouldn't and the people that we know too. That's the big thing the people we know Because of being in this community has changed my life has made me
00:35:33
Speaker
into so much of a better person, that that's one thing I would never change.
00:35:41
Speaker
So everything that you are saying, gosh, I'm like thinking even just the amount of mindset work that you have to have as a mom to then be able to then life coach your child through all this. So let's talk about that because you're talking about the community being like, you know, you're talking about who you are right now. You wouldn't be had you not had this community.
00:36:07
Speaker
Is that where you got a lot of your resources in order to also work on that aspect of that mindset and being able to have the tools to then help your child navigate this new way in which life was going to look like for him and your family? I feel like I've been with the community. I'm able to gain education regarding what an amputee needs.
00:36:35
Speaker
Regarding prosthetics and resources of grants and all those logistics. With being a life coach, I don't know where that came from.
00:36:52
Speaker
I just feel like one of the biggest things that I've learned and that I like stay so true to and I had mentioned before is like is just letting him feel and also he went to therapy for a little bit too and I think the one thing that I really learned from that is really learning how to communicate with each other and that has been really huge because the minute I know something's off or something's wrong
00:37:17
Speaker
I just try and get him to express himself and get him to talk and then we can be open and have a conversation about it. And that's actually one of the things that we really push for on our platform is with children who, this is a little bit of a segue and a little bit off topic, but like children who are scared of people who have disabilities or just think it's weird or are freaked out by it.
00:37:42
Speaker
The parent needs to learn how to communicate with them and learn how to get them to open up. So there can be this open communication instead of hush, don't say that that's rude. Like that. I mean, there was a kid yesterday that was at my house and he saw a book that we have of a little boy who doesn't have his leg on it. And he's just like, that's scary. I was like, nope, it's not. It's just different. And he's different. Yeah. And he would not let it go. And I was like, okay, I'm just going to try and get him to keep talking about it so I can
00:38:12
Speaker
We can just keep this conversation open and oh man. I really wish that happened more with parents You said something that just reminded me even of who how I am I'm kind of I am somebody that just says what comes up to mind and sometimes that I end up Literally putting my foot in my mouth. Like I know that that that analogy right now would be you know, no
00:38:34
Speaker
But, um, at the, at the, one of the pharmacies, just, just gentlemen, I always see, he's the one at the cashier and I see him all the time. I'm like, Oh, hi. And his name's Ken. And so, cause I'm Ken Dry always, I'm like, Hey, your name's half of my name. I'm like, cause, um, and then, you know, talking, and then one day that we're like going through there. And then all of a sudden, you know, he was, cause sometimes he's standing.
00:38:58
Speaker
I don't remember. But then all of a sudden I'm like, I saw he he had a prosthetic on his leg. And I was like, I just I literally went in.
00:39:09
Speaker
Oh, I had never seen that you had a prosthetic. Like I just was full on like straight up. I just said it. I acknowledge. I didn't like pretend like I had. I was like, I didn't know. I had not noticed it. So he was like, oh, yeah. And I'm like, did it happen recently? Like, or is it something you were bored with? I just go. I just ask.
00:39:29
Speaker
I asked questions like, Oh, no, it's like three years ago. And I'm like, Oh, and how have you, is it like, so, you know, I know I just start a conversation because I, it is more uncomfortable to pretend one that you're not seeing what you're seeing, I think. Right. And not
00:39:45
Speaker
ask but also let's talk about this. What are the ways in which some of the kids or people have approached you or Hunter in a way that you know that it's inquisitive and
Respectful Engagement with Disabilities
00:39:58
Speaker
coming out of really wanting to learn like me like with Ken you know that it was really just me like oh I didn't realize that it's not coming out of
00:40:08
Speaker
you know, fear that's coming out of, you know, learning. Yes. Oh, gosh, that is such a good question. And I feel like that is like such a multi layered question, because I think it's different when it comes to adults, a kid, but okay, so
00:40:23
Speaker
When we first got into this world, we were kind of like, oh, we want to support the just ask narrative. Oh, instead of staring or anything, just ask, like just send up your kid to my kid and just ask. But then I started digging into it a little bit more and listening.
00:40:40
Speaker
listening to other people who are disabled. That is where I have learned the most. I follow quite a few people, quite a few adults on Instagram who I admire so much. One of them is a writer. One of them is just an avid content creator and I just listen to them and it just makes sense. And it's kind of like instead of sending your kid up to my kid to just ask,
00:41:04
Speaker
why don't you have a conversation with them as the parent and just have your kid play with my kid and and so they can just be introduced to it and so it's really hard because we want to educate people we want them to be aware and how else are they going to learn but at the same time
00:41:21
Speaker
don't use my kid as a learning experience of like, sending them up to my kid. And the perfect example is we were in San Antonio and for the weekend just for fun. And in the matter of that weekend, we had one shot one parent like really hush their child harshly. We walked into two different stores and both times the person behind the counter
00:41:40
Speaker
Asked him how he got the prosthetic leg or something like that and I'm like my kid just wants to enjoy his ice cream He just wants to go in and get his ice cream and not feel like the only thing they're looking at is the leg and so There is I feel like a gray area balance
00:41:56
Speaker
It's like a balance between the two. Mine already had a relationship. Exactly. You know what I mean? This was somebody I was seeing all the time. Yes. It was just suddenly, wait a minute. I had not noticed. And that's the difference, Kendra. That's the difference. And I think that's one of the big things. And if you ask Hunter, and if you say, OK, do you mind if someone asks you questions? And he's kind of like, oh, no. Because he's in this world. And I said, OK, well, would you rather a stranger ask you a question or a friend ask you a question? And he said, a friend.
00:42:24
Speaker
I'm like that's that's like hitting the nail on the head is he doesn't want to be out in public and have strangers asking questions so they could appease their curiosity and especially because he lost his leg because of trauma and so We're in the ice cream store and they're like, oh, how did you get that? Well, let me tell you about how this dog attacked me and lost my leg and I think that's where it comes from and
00:42:48
Speaker
We don't know how people became disabled whether it was trauma whether it was congenital whether it was last week Do we? Want to try and bring up this trauma and I feel like the ones that are congenital. It's such This isn't saying that they live a different life by any means but it is a different answer Opposed to saying oh I had to go through this trauma to get through it. Yeah, I feel like it's a way to protect that trauma community
00:43:19
Speaker
And there's people who are congenital who might say the same thing too. So it's really tough, but I think the biggest thing that we can encourage people to do is ask and say, are you okay with me answering these questions? And I'm trying to teach Hunter to say, if you're not, just say no. And because when people do ask him, he kind of looks at me if he's with me. And I mean, there was this one time, sorry, I'm going off a little bit, but this is something I'm so passionate about. But we were at the park one time and he's just standing there at the swings
00:43:48
Speaker
pushing his brother or something and there was this kid who was relentless and he was like, what happened to your leg? Why is your leg like that? He would not stop asking and Hunter was so awesome because I just watched. I was like, I'm really curious to see how this plays out because he's older now and I'm not at the playground with him anymore at school and Hunter just ignored him. And I was like, that's fine. And people will say, oh, that's rude. It's like, no, this is his life. Those are his boundaries and this kid won't stop asking.
00:44:17
Speaker
he doesn't have just because someone has a disability doesn't mean they owe it to everybody what their story is and I think that's the biggest thing like and people think oh repeat that repeat that repeat that again okay so just because someone has a disability doesn't mean they owe everyone around him what their story is
00:44:38
Speaker
they don't have to answer to people and i feel like in this day and age of oh we need to be polite we need to be nice and there's the coined term of a nice disabled person oh let me answer all your questions but then shouldn't they be able to live their life how we do they already live their life so differently so why do they have to answer people's curiosities they're not a curiosity that was back when they had freak shows hunter would have been a part of a freak show back in the day when they had these
00:45:06
Speaker
freak shows and they were considered curiosities. That is not what they are. If you want to educate yourself, there are many ways to do that, besides asking my kid when he walks into an ice cream shop. That is like
00:45:23
Speaker
mic drop mic drop yes literally like i got chills because it is so so true like just like the perspective that you are sharing and it's a i'm learning as i'm going through because i do end up being somebody that just kind of like a child that that lens is sometimes
00:45:42
Speaker
not there in mind because it's coming literally from this good place. It's that aspect still of not knowing what you mentioned before. Do you want to have the other person relive that trauma that they've just experienced as they're sharing? And that is huge. So thank you so much for that. I do want to say really quick, though,
00:46:02
Speaker
When it comes to people in wheelchairs or they have these mobility aids, if someone came up to Hunter and was just like, hey man, your leg is so cool, that is totally okay. It doesn't need to be ignored, per se.
00:46:18
Speaker
But I've had people come to me and be like, can I tell your kid that I love his leg? Go ahead. That is so much better than be like, hey, let me dig into your medical history and find out how you became disabled.
00:46:35
Speaker
Because then that just you're right. It's more like for ourselves. It's like ourselves appeasing our own curiosity rather than really it being about the other person. It's like our own inquisitive mind. That's why reality shows are so popular, right? Because people are so like curious about why, you know, people's like, well, I am too. That's why I have podcasts and ask questions. I just invite people to this.
00:47:02
Speaker
That's my way. Right, exactly. And it's such a thing within the disabled community. It's become this social norm to ask disabled people questions. If someone was bald, would you say, hey, how did you lose your hair?
00:47:18
Speaker
No one's gonna do that or like if someone was pregnant and the child was like, whoa Why is your belly like that? Oh, just ask just go up to her and ask her why like but if they have a disability go ahead because that is the world we live in ask a disabled person anything you want because it is They are our teachers, but that is not the narrative that we support we support education and awareness and
00:47:44
Speaker
And it almost seems counterproductive, but it's not. We're just trying to teach people how to do it. And I hope that sometimes I feel like we get attacked a little bit. Like, oh, were you telling us not to ask questions yet? You're here on Instagram. I'm like, uh, you're not, you don't get it.
00:48:04
Speaker
That's different because you're choosing what it is you're sharing. That's very different. It's your platform. You're choosing what you're sharing. And just because you're in that social space, it still doesn't mean that it's just allowing people to, you know what I mean? Like to just say whatever.
Educational Resources and Representation
00:48:20
Speaker
So yeah, it is different. Now let's then dive into what it is you guys do and your book that you're writing and all those things and how people are going to be able to
00:48:30
Speaker
to find you. We could probably talk a whole other hour because I still want to go even deeper into the whole, how do you navigate your trial, helping them with that process. Yeah, so tell us about that, the book. Yeah, so the exciting stuff. We are actually just about to launch pre-orders for the e-book next week. We are doing a cover reel this weekend, so this is real-time, real-life right now.
00:48:57
Speaker
Our book is coming to life. And so this first book that is coming out is called Hunter's Tall Tales. And it's there's another book that is out there that is very similar that I love. And the author is great. And I if you want to learn more about disabilities, follow the they're called the catch poles.
00:49:15
Speaker
like catch and then fishing pole with an S, the catch poles. He wrote a book and when it came out, I was like, oh my gosh, I think this book is so similar to mine. But basically we're supporting the narrative of don't just ask. And so it's basically Hunter, he goes to his first day of school and all these kids are asking him questions and he's making up these crazy stories. That's why it's called the Hunter's Tall Tales. And then finally, he's,
00:49:43
Speaker
he approaches a kid and in his mind he's thinking okay here comes more questions and then he asks the question.
00:49:49
Speaker
that leaves Hunter totally speechless. And he says, what's your name? And that's it. And he didn't ask any other questions. And he said, I'm Hunter. Let's play soccer. And then all of a sudden, all these other kids join in. And that's the message that we want to share with that book. We also have another book that Hunter is co-authoring with me. It's a nonfiction book. We have 30 famous people who are disabled. They're artists, athletes.
00:50:19
Speaker
Activists we have a sailor we have singers. We have an extreme Extreme wheelchair guy and It's all of their bios in one place with beautiful artistry from the illustrator Brandt Day who is my illustrator and we came up with idea of this book because we love our community so much that we want to tell everybody about the people in this community and what
00:50:48
Speaker
What is driving me to do that is that I feel like every household has different names in their household, you know, household names, whether it be celebrities or authors or whatever. We want people who have disabilities to be household names. And I just feel like right now, there isn't enough.
00:51:05
Speaker
um who how many people know about eric wine mayor who was the first blind man to summit mount everest he's like one of our heroes he was just on a show on disney plus or mandy harvey who is profoundly deaf and is a professional singer she literally can hear nothing yet she has a voice of an angel somehow there's all these amazing people it's like we're among giants and how many people do we really know about and so that is our goal and our mission
00:51:33
Speaker
to tell people about these people. Some of them are from the past, most of them are living, and we have some people from around the world, and we just want to tell you all about them. So that book is called Represent, Volume One, and that is, like I said, being co-authored with Hunter. He has helped me pick all the people, and we are researching them all the time, so.
00:51:53
Speaker
Love it. So he's a co-author, imagine co-authoring at his age that he can add that to his list. That is so awesome. That's so awesome. So many amazing things. Now, how can people reach you? How can people find you? Yeah, so I have a website and the website
00:52:14
Speaker
I work so hard on the website. I have a whole page of books that have, they all feature a disabled character. So I have a huge, I have probably one of the largest databases you can find online, at least from what I've found so far. So if you go to my website, which is my name, RosalieMassTaylor.com, we really want to encourage people to read books that have disabled characters. So you can find that on there and also
00:52:38
Speaker
We have resources for libraries and independent bookstores to celebrate Disability Pride Month, which is in July, to display books by disabled authors or that have disabled characters in them. That's huge. No one's doing that. Very few people are doing that. So we're really pushing for that. We hope to see a change in that. Yeah, just like they did the Black History Month and all the people supporting. Yes. Different also. So the same idea of supporting
00:53:05
Speaker
businesses or artistry, anything that attends disabled community. Yeah. So that's all on my website. And on my website, you can find links to our Instagram and my Facebook page and everything.
Conclusion and Encouragement
00:53:16
Speaker
A one stop shop. So I'll link your website below.
00:53:20
Speaker
One last question before we wrap up. Is there anything I did not ask you that you still want to touch up or any last words for the listeners as we all are learning how to be able to be more
00:53:37
Speaker
Careful with our words or and mindful of the disabled community. What else would you like us to learn? Yeah, I think the best way to be an ally is To put forth an effort to just try and learn and to try and listen I think that's kind of one of the big things in society right now How much are we listening how much?
00:53:57
Speaker
Are we going out there and looking for information? And I feel like I am unworthy almost to be in this space because I don't have the disability. I am adjacent to it. I am close to it. I am the mother of a disabled child. I do not have a disability. I can only say so much. And so everything that I learn, I try and learn from a person who is disabled.
00:54:21
Speaker
I feel like that is the best thing that we can do and to just have open hearts and open minds and to realize that disability is the largest minority in the entire world and You would never guess that with how much of a voice they have And so we can help to amplify their voices and become better allies as we learn from them Wow
00:54:46
Speaker
It is so amazing. I learned so much. I am so grateful to you and for you as well, for you being on this space. Grateful also to Diana, who we how we connected, somebody else I had on the podcast.
00:55:01
Speaker
and grateful for everything you've shared here, all the learnings I've had myself and for my own growth so that I can pass that down to also for my children too. So thank you once again, Rosalie. Again, this was Rosalie. Mass. Mass.
00:55:22
Speaker
Mass Taylor. I'll say it for you, Mass Taylor. Thank you so much. Thank you so much so much. Thank you Rosalie Mass Taylor for being on the podcast. Thank you. See you soon.
00:55:41
Speaker
Thank you again so much for choosing to listen today. I hope that you can take away a few nuggets from today's episode that can bring you comfort in your times of grief. If so, it would mean so much to me if you would rate and comment on this episode. And if you feel inspired in some way to share it with someone who may need to hear this, please do so.
00:56:10
Speaker
Also, if you or someone you know has a story of grief and gratitude that should be shared so that others can be inspired as well, please reach out to me. And thanks once again for tuning into Grief Gratitude and the Gray in Between podcast. Have a beautiful day.