Jennifer Canvasser's world was shattered when she lost her son to Necrotizing Enterocolitis. Now, she's on a mission to raise awareness and support families facing the same struggles. But just as her advocacy began to gain momentum, a shocking discovery threatened to...
Episode 188 | Rhandyl and Deonna’s Stories from Raising Disabled
Podcast Show Notes
Does this sound familiar? Are you a parent of a disabled child, feeling overwhelmed and isolated? Maybe you’ve been told to simply toughen up and handle it on your own. But that advice only deepens the pain of loneliness and frustration. It’s time to break free from this ineffective action and find the support you truly deserve.
We just wanted people to feel connected… to make other parents who live that isolated, incredibly different life feel like there’s someone out there who understands them. – Deanna Wade
My special guests are Rhandyl Vinyard and Deonna Wade.
Meet Rhandyl Vinyard and Deonna Wade – two veterans in the realm of raising disabled children who are turning their personal journeys into bridges of support for others. Rhandyl, who works in the medical field as a physical therapist assistant, brings to the conversation practical insights from the frontlines of her own experiences with her daughter Remy. Deonna, previously a teacher, navigates the new normal after her daughter Allie suddenly becomes disabled. Originating from vastly different backgrounds, they share one fundamental and life-altering experience – being mothers to children with disabilities. Their inspiring stories are filled with lessons, encouraging others walking this path to find connection and community.
This is Rhandyl Vinyard, Deonna Wade’s story:
Deonna Wade, a former teacher, and loving mother of two was living a seemingly normal life. Her world took a drastic turn when her daughter Allie suffered a fall that left her paralyzed from the shoulders down. Initially overwhelmed by the sudden thrust into the medical world, Deonna found herself in a position of having to be an advocate for her daughter. She realized that she needed to become a fierce protector and voice for Allie. Through this journey, she discovered the depth of her own strength and resilience. Deonna began to learn about the intricate details of her daughter’s condition, pushing past any discomfort to ensure her daughter received the best care. This transformation led her to a new understanding of herself and her role as a parent. She also found an outlet in hosting a podcast dedicated to building a supportive community for parents with disabled children, providing a sense of connection in the midst of isolation.
In this episode, you will be able to:
- Delve into the enriching experience of raising children with disabilities.
- Identify the hidden struggles endured by parents of children with special needs.
- Find out how to cultivate a compassionate community for parents working through extraordinary circumstances.
- Ascertain the criticality of advocating for your child’s distinctive needs.
- Learn about the transformative role of Child Life specialists in supporting these special families.
Resources and Opportunities for Caregivers of Disabled Children
Equipping oneself with the knowledge and tools to adequately care for a disabled child can seem daunting. The good news is, there’s a myriad of resources available for caregivers. From educational content about different diagnoses to counseling services and societal aid, resources available vary in format and depth, making it easier to access information tailored to individual requirements. Child Life On Call is one such resource, where Katie Taylor provides opportunities for healthcare providers to earn professional development units and starter kits for parents. A sincere effort towards helping parents, healthcare providers, and Child Life specialists navigate the journey efficiently. Deonna and Rhandyl express their gratitude for such resources which empower caregivers to make informed decisions and enhance their capacity to provide the best possible care.
Advocating for your child: Trusting your instincts
As a parent, we inherently yearn to protect and provide for our offspring. Advocating for a disabled child sometimes means swimming against the tide of established norms. It’s about standing resolute, fighting for your child’s best interest, and creating room for your parental instincts to drive you in the face of contradicting professional advice or societal norms. It’s about defying the odds, baring one’s spirit, and following the whispers of parental intuition. Deonna Wade shares a powerful incident where her intuition clashed with medical staff’s opinion. It wasn’t easy, but she chose to trust her instincts and spoke up forcefully for her daughter’s needs, a decision she remains proud of today. Similarly, Rhandyl Vinyard encourages parents to prioritize their child’s wellbeing above societal pressures, emphasizing the importance of a parent’s intuition in supplementing professional advice.
Building A Supportive Network for Parents of Disabled Children
The strength of any supportive network lies at the intersection of shared experiences and mutual understanding. Building this network for parents raising disabled children involves creating spaces where mutual support and sharing can grow organically. This is more than just a gathering of like-minded individuals. It’s a haven, a comfort zone, where parents can let their guards down, share their stories – struggles and triumphs alike, without fear of judgment. It involves digital platforms, physical meetups, and other inclusive strategies that weave into an effortless fabric of caring and understanding. Rhandyl Vinyard and Deonna Wade, embody this concept perfectly in their podcast, Raising Disabled. Serving as a platform for parents to connect, they’ve been able to create a community that thrives on shared experiences and a deep understanding of one another’s journey. They make it a point not just to share their own story, but to also absorb the narratives of other parents and families they encounter, creating a solid community backdrop for their podcast.
The resources mentioned in this episode are:
- Listen to the Raising Disabled podcast: Check out Deonna and Randall’s podcast, Raising Disabled, to hear more about their personal experiences and insights into raising disabled children.
- Follow Raising Disabled on social media: Stay connected with Deonna and Randall by following Raising Disabled on social media platforms like Instagram
- Connect with Child Life On Call: If you’re interested in hearing more stories from parents navigating healthcare experiences, check out Child Life On Call, the podcast hosted by Katie Taylor.
- Consider starting your own podcast: If you have a unique story or perspective to share, think about starting your own podcast. It can be a powerful platform for sharing and connecting with others.
- Learn about Child Life Specialists: Find out more about the role of Child Life Specialists in supporting children and families during medical experiences by visiting relevant websites or listening to expert episodes on Child Life On Call.
- Advocate for your child: As a parent, it’s important to be a confident advocate and partner with your child’s care team during healthcare experiences. Take the time to educate yourself on your child’s condition and treatment options, and don’t hesitate to speak up and ask questions.
Timestamped summary of this episode:
00:00:00 – Introduction,
Introduction to the episode and the Raising Disabled podcast, which focuses on the experiences of parents raising disabled children.
00:03:33 – Starting the Podcast,
Deanna reached out to Randall about starting a podcast to share their stories and provide support for other parents raising disabled children.
00:07:49 – Purpose of the Podcast,
The purpose of Raising Disabled is to help parents feel connected and understood by sharing their experiences and offering support to others going through similar challenges.
00:10:04 – Deanna’s Story,
Deanna’s daughter became disabled after a fall that resulted in a rare and severe stroke. This traumatic event thrust her family into the medical world and changed their lives.
00:13:02 – Randall’s Story,
Randall’s daughter was born prematurely and experienced breathing difficulties. She required a tracheostomy and G tube, leading to a year-long stay at Texas Children’s Hospital. Both parents, despite having no medical background, became knowledgeable advocates for their children.
00:16:30 – Remy’s Journey,
Rhandyl discusses his daughter Remy’s medical journey, including thoracic surgery and her progress in respiratory health. He also shares that Remy has central apnea and is developmentally delayed but describes her as a miracle and a joy to be around.
00:19:48 – Remy’s Personality,
Rhandyl and Deonna talk about Remy’s personality, describing her as sassy, stubborn, and happy. They mention that she loves movies and has a communication device. They also mention her “cat mode” when she prefers to be left alone.
00:20:56 – Allie’s Journey,
Deonna shares that her daughter Allie experienced a traumatic injury and had personality changes. She discusses Allie’s wheelchair use, tracheostomy, and her journey to recovery. Deonna mentions the importance of not solely identifying as a caretaker and finding personal outlets outside of caregiving.
00:23:19 – Coping Mechanisms,
Rhandyl and Deonna discuss the coping mechanisms they have developed. Rhandyl emphasizes the importance of faith in Christ and living in the present. Deonna highlights the benefits of counseling and maintaining a sense of self outside of caregiving.
00:28:10 – Finding Joy,
Deonna shares that despite the challenges, she and Rhandyl have great lives and find joy in the present. She encourages parents to have fun and be thankful for what they have. Rhandyl mentions the importance
00:32:48 – The Importance of Advocating for Your Child,
The guest shares her experience of relying on nurses to speak for her during her child’s hospital stay, but realizing that she needed to become her child’s advocate in order for her to survive. She discusses the need to become assertive and direct with medical professionals and not care about everyone’s feelings.
00:35:47 – Transitioning into a Different Role,
The guest talks about the moment she realized she needed to become a different person in order to advocate for her child’s needs. She shares a story of taking charge and making decisions without following the proper channels, which resulted in a successful transfer to a different hospital. She reflects on the changes she had to make and the challenges of being a parent to a disabled child.
00:38:47 – Learning to Trust Your Instincts,
The guest discussed the importance of trusting her gut instincts as a parent and learning to speak up when she felt strongly about something. She shares a story of a nurse encouraging her to take on more responsibility in her child’s care and how she grew into the role of being her child’s advocate. She emphasizes the importance of being relentless and advocating for what is best for your child.
00:43:58 – Taking Control of Medical Decisions,
The guest talks about how she has taken on the role of running the show when it comes to her child’s medical care. She discusses the power struggle that can occur between parents and medical professionals and the importance of standing up for what you believe is best for
00:49:01 – The Purpose of the Podcast,
The hosts discuss their main goal of being a resource for caregivers raising disabled children and educating everyone. They emphasize the importance of creating a community and spreading the message that everybody belongs.
00:50:30 – Broad Topics of Discussion,
The hosts express their excitement about covering a wide range of topics in their podcast, including education, treatment approaches, and things to avoid saying to children with disabilities. They want to provide valuable information for a broad audience.
00:51:49 – The Value of Child Life,
The hosts express their gratitude for the Child Life specialists who played a significant role in their child’s hospital stay. They credit Child Life for creating positive and memorable experiences during a challenging time and highlight the impact of their presence and activities.
00:52:55 – Discovering the Importance of Child Life,
The hosts discuss how they initially had little knowledge about the role of Child Life specialists but were deeply grateful for their support and the special moments they created. They express their hope that their podcast will help raise awareness about the importance of Child Life.
00:55:22 – Resources and Opportunities,
The hosts share about the resources and opportunities available on their website, including information for parents, professionals, healthcare providers, and Child Life specialists. They encourage listeners to engage with them on Instagram and to rate and review the podcast to help other families find it.
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You’re listening to episode 189, Deonna and Randall’s Story, the co hosts from the Raising Disabled podcast.
Hello, my friends. Welcome to Child Life On Call. This podcast is a safe place for parents to share their stories about what it’s like to have a child that has a medical experience, diagnosis, disease, and or everything in between. We know there is power in sharing stories, and that power multiplies when you can listen to other parents who have walked a similar path to yours. Giving and getting advice is great, but hearing how another parent navigates the complexities and nuances of healthcare is even better.
As a child life specialist, my role is to support, validate, and provide emotionally safe spaces for kids and their families, and I am so honored to be on this journey with you. In addition to parent stories, we sprinkle in some expert episodes every now and again that have content for both parents and professionals in the field of healthcare, all with the mission to empower parents to be confident advocates and partners with the care team during healthcare experiences. We’re so glad you’re here. Hello, my friends. I’m so happy that you’re here to listen to Deonna and Randall today.
They are two fabulous moms from the state of Texas. So just a little bit further from where I am here in Austin, and they are the moms behind the new podcast called Raising Disabled. And they speak about their own personal experiences and what they go through for raising disabled children from two totally different perspectives, but so much commonalities. So, Randall, you’ll learn a little bit about her story and her daughter was born with some. And you’ll hear from Randall, who has been caring for her daughter who has been disabled since birth.
And then we’ll hear from Deonna, whose daughter became disabled after a freak tragic accident. So this is a great introduction to the two of them so you can get to know their personalities and how much fun they are. But then please go to Raising Disabled podcast and listen. They, first of all, are such sweet and cute friends. So it’s really fun to listen to them encourage each other, joke around with one another.
Makes me so sad that I don’t have a co host for this podcast. Totally jealous of their friendship, and then just kind of like how navigating the healthcare system and life and siblings and family and friendships, they just have so much in common between the two of them. So it’s really uplifting and really authentic. And I totally recommend their podcast. So go give them a listen.
It is called raising disabled. Okay. So I’m so honored to be able to share their story a little bit about how they came up with the podcast together, who slid into whose DMs and how they became friends. But yeah, I’m just so thrilled you’re here with us today. So thanks for being here.
So I’m so excited to have Gianna and Randall with me today. I am Katie, the host of Child Life On Call. And I’m specifically excited, Randall, because you and I got connected through a mutual friend. And it’s always just more fun when you know somebody through somebody else. But you are somewhat new podcasters, and I love listening to your podcast, Raising Disabled, and would love if each of you could just tell us a little bit about yourself, where you’re from, and a little bit about your family and then we’ll get started from there.
So, Randall, since I called you out, do you want to start? Sure. My name is Rhandyl Vinyard and I’m a mom of two. I live in Lubbock, Texas. My husband and I do we’ve been here for probably around 15 years or so, and we both work in the medical field.
I am a physical therapist assistant. My husband is a family nurse practitioner, and we have two kids. Remy is our oldest. She’s six. She’s about to be seven at the end of August.
And then my son Barrett just turned two. I’m Deonna Wade and I live in Lubbock, which is the same town as Randall, and we’ve been here a few years. And we went to college here back in the day, but we made our way back here and I’m married to a police pilot. His name’s Dane, and then he’s a 6th grader. And then I have my daughter who’s seven, Allie, and she’s our disabled child.
Well, I’m so glad y’all are here. And what I’m most excited about is kind of what Child Life On Call is designed to do, is we started as a podcast, really for those parents who are in kind of the beginning phases of kind of life changing experiences in healthcare and learning how to navigate it. And it can just feel so isolating. Like, how can I find anyone else who’s been through this before? Which is kind of the whole purpose of your podcast, raising Disabled.
I want to hear first, how did you come up with the idea of the podcast? Like, who texted who first about it, and how did y’all become friends? And that whole. Me, I actually texted Deonna about it. So we had been connected for quite a few years now through actually Child Life On Call’s in Houston.
Both of our daughters ended up pretty long hospitalizations there and just through employees and this hospital administration, really knowing that they were moving to Lubbock, we got connected that way via social media. I started following Deonna and her daughter Allie’s story. And so my daughter Remington that I mentioned, we call her Remy, though she is our disabled child, her daughter and my daughter have similar medical diagnoses and accessories. Both our daughters have trachs and ventilators. And we were basically just connected that way first.
And then over the years, we had actually only met up in person only one time right before I text. One time. Yeah, we had been in touch a lot via messaging and texting and things like that. And even though we lived in the same town, we hadn’t met in person other than one time before. I actually texted her and was like, hey, random question, but would you want to start a podcast?
And she was like, sure. And then we very quickly realized there is a process, big process, too. It’s not just getting behind a mic. There’s a lot. But yeah, I had been thinking for years now that I wanted to find a way to share my story and others that are in similar situation without exposing my life on YouTube and just a way that I can just share and try to help others, but in a way that it wouldn’t be weird for me.
And so I listened to a lot of podcasts, and I felt strongly that I wanted to have a co host. And I just felt like Diana, she would be amazing. And so, yeah, that was how it. So, yeah, I think if we knew how much went into doing a podcast, we maybe wouldn’t have done it. But now we’re in it, so we’re doing it now.
But there are a few podcasts out there like us, but we just wanted people to feel connected. Because, like you said, when you find out you have a child that has some sort of diagnosis, whatever it is, it’s so isolating, and you’re searching for people and I mean, yeah, that’s how me and Randall got connected, is people in Houston knew, okay, y’all are in the same town. Your kids both have trakes. We would have never met each other if it hadn’t been for people connecting us together. Well, we would have probably at some point.
But that’s the reason we’re doing this, is just to make other parents who live that isolated, incredibly different life feel like there’s someone out there who understands them, basically. It’s so interesting to listen to you all talk on your podcast because two very different stories, but all the time you all are like, oh, that happened to us too. That’s the same thing for us. We’re like, I haven’t done yet that yet, but I know it’s coming. And the co host thing, I’m so jealous of.
Luckily, I get to interview people, so I feel like I’m not alone. But it is nice that you all’s banter the way you talk, the way you connect and you speak so respectfully and just listen to each other is really awesome. It’s a great friendship, and it’s like we get a little sneak peek into it.
Yeah, it’s funny. We talked about it when we very first started. We were both like, it’s kind of good that we don’t really know each other that well because literally every episode we’re learning something new from each other. If we would have known each other for years, then we wouldn’t think to ask certain questions because we would just already know. So we enjoy it a lot.
Yeah. And it’s also what you mentioned, Randall, just about being able to share your story in a way that you want it to be. Know, podcasts are so authentic because we’re just sitting here talking, but at the same time, there’s an amount of control you get to have. And like on Child Life On Call, we really want to focus on how your interpretation of your events and how affected you as a parent. So that might kind of be a good starting point.
Deonna, since I had Randall start first, I’ll have you start this time if you want to tell us a little bit kind of about your background before becoming a parent and what your kind of introduction into the medical world was through your daughter. Yeah, so I was a teacher for a while, and we actually moved to El Paso, Texas, a while back, and I’d already had my son I had my daughter there in El Paso, and I like to say my life was super normal. I hate to use that word, but I did not have any interest in the medical field. I would pass out if I saw blood. That was not my thing.
And so when I look back on my old self, it’s very shocking to see how far I’ve come, but no interest in the medical field whatsoever at all. And so when I’ll give a quick story of my daughter in 2020, she fell off our couch and was just instantly paralyzed from the shoulders down, and we had no idea she had something wrong with her. She actually had something wrong with her brain and basically had, like, a very serious stroke as a result of that incredibly innocent fall. It’s a one in a million thing. It’s very rare what happened to her, but we’re thrust into that medical world, and it was a very eye opening, shocking, traumatic next few years.
We’re coming up on three year anniversary of it this November. And so our whole world now is medical. We think about it all day. We talk about it all day. Me and my husband are like, what did we even talk about before this happened?
I don’t know. I mean, that’s all we talk about and we live and breathe it, but yeah, we just were thrust into that world. And a lot of people will ask, are you guys a nurse or is one of you a nurse? No. You really have to get that level of knowledge about your kid specifically that we never, ever thought we would know these things or have an interest in them.
But you’re forced to learn it because it’s your kid and you love them and you’re going to do whatever. That’s our introduction into the medical parenting lifestyle.
Yeah. On our side, we are, like I said earlier, both in the medical field. So my husband, he worked adults in the hospital. He was a nurse at the time and I worked outpatient orthopedic adult physical therapy. So, yeah, this is kind of a funny story that we like to tell my husband.
People would ask him when he was in nursing school, what do you want to do? What area do you want to work? And he was like, I know there’s for sure the big things that I do not want to work with, and that is pediatrics and tracheostomies.
And God was like, well, here you go. Challenging. So that was kind of our pre medical story. So our daughter, our first pregnancy. I’ll try to make this the kind of the full story.
Not really the full story, but a little longer story is on our raising disabled Randall’s story. But I went into labor at 32 weeks unexpectedly unknowingly. Anything was wrong. It was just very quick, had Remy very fast and furious. And she was born not breathing.
They intubated her in the delivery room and rushed her to the NICU. We were told later that she didn’t move a muscle for like 4 hours and they didn’t know she was going to make it, didn’t tell us any of that at the time, but until after she kind of came around and she ended up not being able to breathe without the tube. And so we were transferred from our local hospital here to Child Life On Call’s when she was two months old. And she got her trach and a G tube when she was three months old. And then we ended up spending a little over a full year at Child Life On Call’s.
She was in the NICU and then she was transferred to they now call it the Ticu, the transitional ICU. At the time it was called like the PCU. Yeah, I can’t remember what that standed for. But anyway, we were there for basically she was just there. We were trying to transition her home on a ventilator, and her settings were so high that no one in Lubbock was very comfortable and they weren’t comfortable sending her that far away from a large pediatric medical area.
And so we basically kind of had to wait it out. There were lots of ups and downs and roller coasters on that whole year, but she was eventually home. She was a little over 15 months old when we brought her home to Lubbock. And since then she was at that time on very high ventilator settings. 24/7.
That was in 2017. Sorry, in 2019, she went to Child Life On Call and had selective airway surgery that we were able to get her approved for. And it was called a posterior tracheopexi. So ultimately Remy’s airways are really floppy and it’s called trachea bronchomalasia. And when she was born and up until this surgery, she had like a 95 to 97, pretty much a full airway occlusion whenever she would exhale.
And so I had got on and researched and found this specific thoracic surgeon that was performing these procedures specifically for these Malaysias and pediatrics. And so she went and had the surgery in January of 2019. And ever since then, she has progressed respiratory. From a respiratory standpoint, she can come off of the ventilator when she’s healthy at baseline and awake, and she can eat by mouth without being on the ventilator. But she has what is called central apnea.
So when she falls asleep, she needs the ventilator because her brain doesn’t trigger her to breathe. She’s also developmentally delayed, nonverbal. But she’s a miracle. I can’t believe we’re going to celebrate her 7th birthday here in a couple of weeks.
Of course, we get her home and yeah, my husband may not work with pediatric tracheostomy patients, but he’s an expert. Yeah, he’s an expert. And I do pediatric physical therapy, home health. So, yeah, I definitely transitioned into that field because that’s where my passion is. I usually save this question for the end, but I’m just so genuinely curious.
Tell me a little bit about Remy, and then I want to hear about too. Like, tell me about Remy’s personality. What kinds of things does she like when she’s pissed? What does she act like? What is she?
Oh, so right now, actually, when you say when she’s pissed, she actually started decannulating herself now. So she gets mad and she pulls at her trick, and she sometimes pulls it out and she immediately turns blue. And her oxygen reserves are very low if she starts crying or screaming too hard. Now, she’s old enough that she can control it, but when she was younger, just a tantrum, she would breathe so hard. Even after that surgery, she would just exhale literally all of her oxygen and had no reserves.
And we have to bamboo bag her with oxygen. And she still does that when she gets mad. Now, she went to the level of taking out her trach, but anyway, yeah, she’s super sassy. That’s her personality. That’s how I would describe her.
When she’s happy, though, her whole body smiles and she has her happy hands going, and she throws her whole body back. It’s like she can’t control her happiness. She loves movies. When she has her communication device, it doesn’t matter what we’re asking her, she knows what we’re asking her. But she’s going to try to go into her movie options and choose a movie that she wants to watch.
And we’re like, no, we’re not asking you about your movies. Now tell us this. And then she’ll eventually do it. But she’s very stubborn. She’s just sassy stubborn.
But man, when she’s happy and on it, she is just such a joy to be around. But then she has what we call cat mode. And that’s kind of when she’s like, don’t touch me. I only want your attention. It’s my choice.
We call it cat mode. She’ll just be very just like, leave me alone. Yeah, I mean, it’s funny.
Remy’s all sorts of modes, but there’s cat mode, happy mode, piss mode, love it. What about Allie? Yeah, Allie is so as if you have any listeners who’ve had a kid have an injury, it is a little different because we know the before and then we know the after and whether it’s as serious as what’s happened with us or not. There have been personality changes for sure. She was my second kid, so she was very less and did all kinds of crazy things and just was really outgoing.
And so we had to suffer the loss of some of that going away because when you get hurt, you can’t do all the things. She’s in a wheelchair now, so she’s about to get her own wheelchair where she’ll have a little more freedom. But I forgot to say earlier, she’s trached she’s on event too, all the fun things. But it’s amazing because we had to watch her go through a depression as a four year old, which is not fun, but now know in the last year, so she’s coming out of that. And one of the hardest decisions we made was sending her to school.
Because we knew when you have a kid like Ali or Remy, if they get a cold, they could end up in the ICU. It could be deadly. And so we knew putting her in school was know some of that safety of her health, but we did that. And it’s been amazing seeing her get to be around kids again because our situation happened during COVID and so getting to see that spark come back and the honoriness come back. She’s stubborn, too, she likes what she likes, but she didn’t suffer any cognitive changes even though she had a massive stroke, which we’re so blessed about, but she’s still the fun loving, silly girl.
She loves all the things, movies and things like that, too. But we’re really blessed that we didn’t lose that cognitive side of her, too, because she can still talk to us and remember all these things. And yeah, she’s super fun, everybody loves her. But yeah, it was hard watching a four year old go through something that difficult and then watching them kind of recover from that over the last few years. But we’re starting to kind of get our old Allie back.
She’ll start to say something or do something silly or funny that she hadn’t done in a while. So it’s nice getting her back over the last year and a half or so.
Wow. So for the listeners, we just spent an hour talking to each other on I was on their podcast, so I feel like I know some insights about you and I’ve listened to y’all’s podcast, but just the story about Ali being like, I don’t have to do any.
Know, having to do chores forever. So she’s loved there’s there’s a few there’s. There’s not too many, but there are a few. And she knows what they are. And she takes full advantage.
She’ll take them. Yeah. She likes to make sure her brother knows he has to do more chores than her. Her only chore is to sleep at night, and she doesn’t even do that, so that’s her only job. And she’ll stay up all night long, party all night long, and we’re just like, oh, Allie, seriously.
Guys, I’m just kind of going to toss questions out. Feel free to whoever can answer first. But when you guys are looking back over the past seven or three years, what are some of the best things that you’ve done for yourself, to take care of yourself, to feel like you the podcast? Honestly, I don’t know about you, Deonna, but I feel like, yeah, we started this just a few months ago, but I feel like so much like at like there’s so much that I wanted to say and get off my chest for years and didn’t have really an outlet for it. I did.
There were groups and things that I was a part of that were support groups and that were helpful, but really? Yeah, this podcast has been very helpful for me to kind of express those things. One of the biggest things for me since Remy’s birth and all the trials and triumphs and everything, remy has taught me patience and that I’m not in control. And plans are for the birds, so just to live in the present and not stress about the small things. And my faith in Christ has flourished throughout the journey, raising disabled.
And so many things that have been thrown at us over the last seven years are so intense, I don’t even know what I would do without Jesus. And so many things that I’ve learned from Remy are biblical teachings that before were just morals or words that you were supposed to live by, things that I memorized. But through this roller coaster of unknowns, I’ve truly learned that our savior is ultimate control. And so, yeah, if there’s anything that has helped me and got me through this, it would be my faith in Christ. Yeah, I feel all that stuff that she said, for sure.
And I think what I do for myself to kind of be okay because it’s a lot of work. It’s a lot of work to be okay when you’ve seen the things that I’ve seen or the things that Randall has seen with our kids. And I know a lot of parents can relate to this, but I actually started counseling pretty soon after this happened and that’s been good because and I highly recommend that to other parents who are going through any sort of difficult thing. And other difficult things have happened to me since this happened with Allie. This isn’t the only hard thing that’s going to happen to someone in their life.
And so I think it’s good to have someone you can talk to that is not in your family or that you’re not going to hurt their feelings or just like an impartial third party. And so I’ve been doing that for a few years. And it’s been good to get to be able to tell somebody how hard this is without being worried about if it’s going to hurt their feelings or things like that. And another thing I do to help me be okay is I know this can sound kind of insensitive sometimes, but my kids are obviously a big part of my world. I love them very much.
I would do anything for them, but I’ve not allowed myself to make my kids my every single thing. I love them. But me taking care of Allie is not my only part of my identity. I still have Hobies. I mean, like, this podcast has been a really fun hobby for me.
I do art, I do these other things outside of Allie. And I think it’s very dangerous when parents like us become obsessed with that caretaker role and it can become their only thing and their then, you know, if something was to happen to one of our kids in the future, you would have nothing. You would not have put any effort into anything else for yourself. And so I go on trips without ali with my friends. I’m going on one in a couple weeks.
I have other things in my life and that actually bothers people sometimes. They think, oh, I can’t believe you go out of the state without ali and you do this or that. But those are ways that I cope with this and have something outside of her. Because if that’s your only thing is being that caretaker role and that’s it, it’s going to eat you up eventually. It’s going to be so difficult for that to be your life.
And so that’s kind of what I do. And I do a million little things for myself every day to be okay and to have this great life with her. Because we’ve talked about this before. Me and Randall both have great lives. We have really hard lives that some people wouldn’t understand or can’t imagine, but we have good lives and we still have a lot of fun.
Sometimes I think we have more fun because we understand that life is short and that we’re not guaranteed tomorrow. So let’s just have fun today and be happy and thankful for what we have. So that’s kind of what I do for myself. I love that. I think.
Thank you for speaking on that. It probably also comes in waves and towards the beginning of your journey, it’s hard to see that that life could exist for you. It feels so far, but hearing from both of you that it is within reach at some and like, I never even heard it articulated this way, Deonna but hard things are going to continue to happen. This isn’t the one and done. And some will be associated with Ali and Remy, and some mean to have any capacity to take whatever challenge comes next, like the investment in yourself is so important.
We’ll be right back. One of the things I am asked the most often as a child life specialist, not only by the patients and families that I’ve worked with, but by my friends, is how can you support and prepare your child for a shot? And as a parent myself, I know sometimes it’s so hard to even concentrate on what the doctor is saying because I’m so nervous about my child having to get a shot. And, yes, that’s even coming from a child life specialist. Thankfully, I can rely on what I know about child development, family centered care and traumainformed care to pull on medical stressors that could come up for my child, and I know how to support them through it.
And now we want to give parents those same tools that child life specialists use. And that’s why I’m so excited to share with you our new course that’s made just for parents. We have worked with instructional designers who are experts in making courses online. We want to put you, the parent, in the driver’s seat of these appointments. What we do is we go by age group and tell you exactly what the stressors could be for your child and what the interventions are that a child life specialist would use to help your child through having to get some sort of poke.
If you’re a parent who wants to walk into your child’s medical appointment and instead of feeling overwhelmed with anxiety, you want to feel empowered and know how to prepare and support your child and how to advocate for them, then this is the course for you. This course will only be available for four weeks, so go make sure you pre enroll for the course this fall. Go to Child Life On Calloncall.com. MyChild needs a shot. That’s Child Life On Calloncall.com MyChild needs a shot.
I’d love to hear how you both found your voice advocating in a medical setting. Randall, I could say it’s easier for you because you know how to speak pediatric, but everything goes out the window when you’re dealing with your own child. So can you think of a story? Or maybe one of the first times you found yourself using your voice? And maybe it not being met with the way you thought it would be met not in a bad way on the clinical team, but just saying, like, oh, I do have say in what is happening with my child.
Do you guys have a story or experience you could talk about in advocating? Yeah. So my journey with advocating was a slow one because I was so nice and just so passive, and that was my personality back then. And I have Ms, so I had sort of had to advocate for myself just like a little bit, but not what I was going to have. To do with this.
And so during the hospital part, I wasn’t very good at that. I actually relied quite a bit on nurses to talk for me, and I think that’s okay. I mean, you don’t bear overnight unless you were that way before. But when I got home, it was very clear to me very quickly that if I didn’t develop this almost completely different personality, that my kid wouldn’t survive this because the doctors and the nurses and everyone, they care, but they don’t care as much as you do. And so I had to learn really quick that I had to become this person.
And I had been around other moms who had disabled kids in the past, and I remember thinking, I wonder where they’re always so abrupt or so rough or so honest into the point of offending people. And now on the other side of it, I get it, they had to become that way. And now I get made fun of for being so scary and mean, but it’s kind of what you have to become. And I don’t do that with everybody. But you do have to not care about everyone’s feelings as far as, like, medical people.
And most people can handle it. Doctors can handle it. They’re not usually too sensitive. But, yeah, I remember realizing, oh, my gosh, when we got home, I have to be her person because she can’t do that for herself and no one’s going to care for her as much. And I remember the exact moment that my brain just flipped into this other mode and we were in the hospital and she needed a higher level of care.
And this is definitely my number one crazy person story, but by far. But there’s a certain way you do things in a hospital. You go through certain channels to get a transfer. And I was here in Lubbock, and I wanted to be transferred back to Houston because she was needing these really high level surgeries that they were saying they could do here. And I just did not feel good about that.
And I remember calling Child Life On Call’s because I had all these contacts with them, and I remember calling them and just saying, come get us. And I didn’t ask the hospital here’s permission. I didn’t do anything I was supposed to do. They didn’t know I wanted to be transferred, nothing. And they flew in their jet and they came and got us.
And I remember in that moment being like, I have to do what I have to do, and it might not be the right thing or whatever. And it all worked out. We went back and everything she had the surgery, everything was great. But that was definitely my moment where I remember flipping into this other person and it was kind of sad. It was like the death of my old nice personality.
And it was hard, but it is hard to be a parent of a disabled kid, you have to not care as much as you maybe used to or even want to. But, yeah, we definitely aren’t all cuddly all the time. It’s tough, we try to be, but it’s not always going to be that way. I would say for me, honestly, I was becoming a parent for the first time, and I was definitely overwhelmed with the NICU experience in the beginning. At the beginning, just listened to what the doctor said.
They were treating the situation as a typical pre me situation. And then once we kind of figured out, no, there’s something else going on, and I had a very seasoned nurse here at the local NICU before we were transferred. As they were bagging her, they said, mom here, and handed me the bag and had me bag my two month old infant. And she said something to the matter of, like, this is your child, you’re going to have to learn how to do everything that we’re doing if you basically want her to kind of it’s not like a switch like Deonna had, but it was more of like, growing into growing through different experiences that we had. So just, I didn’t know what mom gut felt like, like the feeling that you have.
And I learned the hard way a few times in the beginning, if I didn’t say anything, something I was feeling strongly about, but I was like, no, they’re the medical staff, they’re the professionals, they know what they’re doing. That was what the voice of my mind was telling me, but my gut was telling me, this shouldn’t happen or this should happen. And then when I realized after the fact that I should have said something, and then I was relentless from that point on. Diana and I’ve talked about this before. We definitely had the sticky note on our charts, our kids charts, was like, hard mom, like, warning, warning.
When you step into this room or when you round on this kid, you’re going to get the 20 questions you probably aren’t even going to get report from nurse first. Mom’s going to tell you how it is. So it was definitely a learning process, and I think it was just like figuring out that, oh, I’m mom and I have a lot of say in what’s going to happen every day, even in the hospital. And I did, and I took that and definitely I learned a lot. And so it was more of a process for me.
But by the end of it, and by the time we got home, and to this day, everybody that knows me and Remy in a medical way knows that I know her best and they trust what I say, and if they don’t, then they’re not in our village basically. Well, and I think about you, Randall, literally having just given traumatic birth where out of nowhere and you were just becoming a mom, too. And that mom gut maybe doesn’t come as naturally as society makes it think that it does. Right? Because all of your systems are crossed.
You guys are both in a unique kind of situation that I’d love to hear about in terms of and maybe you’re kind of well known in your community hospital now, but because you’re not located next to the hospital, that you go to all the time. Or maybe you would get transferred to for bigger surgeries. I’m sure you can walk into the Er and have to do a good bit of like let me give you the breakdown on this, this and this and this. And what does it feel like to have to be in a complete medical record at all times and educating hospital staff on that? Oh, it’s exhausting.
Yeah. But I walk in now when we go into the Er, I walk in now and everybody I’m pretty confident in what I’m telling them. This is what’s happening. And luckily, my husband, the hospital that we go to here locally, my husband works there, and so we are blessed that we have those connections. So, like, a lot of the not the pediatric doctors, but they know him.
And it’s funny because the last time we were actually hospitalized, he would be in his work clothes and have his badge on, and then we’d be like, in the hospital room, and then a physician or a nurse would walk in and they’d glance at him. They didn’t realize he was dad. He’s like, no, I’m dad. I’m not at work. I’m just visiting my child here.
For me, we’ve been in and out of our local hospital here, so at this point, they know us and it’s a lot better situation. But the first few times that we went in, it’s overwhelming, honestly, being the medical record. And it’s kind of a funny I’ll shorten it down, but when we did get transferred to Child Life On Call’s, I had mentioned this in one of our podcast episodes, but we were being transferred via the kangaroo crew, the jet, and we’re out on the out at the airport, and we get out of the ambulance. And for those of you that have seen actual physical medical record, it’s all paper. Things don’t get just transferred from hospital to hospital via the interwebs.
They are still a stack of documents those went flying across the tarmac and they were just gone. And so, literally, we get there at like, midnight and they don’t know anything. They basically know her name and date of birth, and I am her medical record. That was a really long night, literally explaining, even though she was only two months old, there was a lot that happened in two months. And obviously they wanted to know from conception to then the record.
So, yeah, it’s overwhelming, and it still is. When you go in and you have a new because it’s not even just hospitalizations, you get a new therapist or a new just and they’ll ask, you kind of tell us her medical history. And I’m like, yeah. It is a lot of pressure when you’re the parent of a kid like Ali or Remy, because the doctors sometimes well, I mean, not always, but sometimes we know more than the medical professionals about that specific situation. And so it’s awkward because you’re kind of trying to run the show, but they think they’re running the show.
It can be a power struggle for sure. But when she first got hurt, I just trusted everyone and I didn’t know any better. But now if we were to go in the hospital today, I’m kind of running what we’re doing and I’m telling them when to give her meds and I’m telling when we’re going to do the bath. I’ve taken a lot of that control because I know what is going to work for her and it can be kind of awkward that way, but it’s something I never thought I’d be able to do, to stand up to a doctor or something. But over time, you get better at deciding what you want for your kid and then making it happen, whether it’s inpatient or outpatient, whatever it is.
Yeah, that’s such a good example too, about the meds and the bath. It’s kind of an AHA moment when you realize like, oh, we don’t have to do a bath right now. Wait, I can put a sign on the door that says, I’m not waking up. Don’t come in in the next 30 minutes. I can turn away child life for the moment when they walk in the room if it’s not a good time, because those are all such important concepts that you just kind of have to learn over time.
But the more you speak out about this, that it is an option, it can be a game changer.
Yeah, for sure. Well, I promised you guys because we talked all morning too, and you have a life to get back to, that we would be somewhat quick on this. And you have so much on your podcast that’s storytelling, advice and just wisdom from what you’ve been through, what do you hope to do with your podcast and what kind of community have you built so far? I know when I was on yours, you already had questions from a little community. So how can parents find you?
How can they connect with you? And what are you really looking to do together as a community? Yeah, we have a group that parents can be a part of if they want to, and it is a closed group for just parents of kids with disabilities that are more on the long term know. And we ask them questions before we do every podcast because I only know what it’s like to be a mom to Allie Randall, only knows what it’s like to be a mom to Remy. And so there’s so many different things that can be going on with your kids.
And so, yeah, people can ask us about that if they want to. And we are on all the platforms to listen to our podcast, but we also are on Instagram at raising disabled podcast. And we share a little more of like our personal life and we share the lives of these girls who are in this group. And it’s dads, too. We don’t want to exclude the dads because my husband especially is an equal caretaker in all this.
He knows everything I know, which isn’t always the case, but in ours it is. And so, yeah, people can find us anywhere. They listen to podcasts. But I can speak for myself. The reason I said yes to Randall’s podcast or idea, because we really don’t have enough time to do something like this.
It’s so much effort to plan these out and record them and edit them and do all the things it takes. But I remember that first day of them telling me that she was paralyzed, she was going to be getting a trach. This was not going away. And I just got on Instagram and I was trying to find, is there someone out there who knows how I feel? And it was hard to find somebody, but you could use hashtags and things like that to find Trach baby or Trach life or things like that.
But it is like we said at the beginning, so isolating where you don’t feel like you’re alone until you step out that front door and you’re at church or at school and you’re comparing your kid to everyone else. And me and Randall have talked about this a lot on our podcast about dumb stuff doesn’t matter anymore. We don’t care about any of the silly little things in life that we used to care about. And so even that it’s hard to make friends with other moms because we just aren’t going through the same journey as we’re. We’re thinking about whether our kids are going to live or die.
That’s not something that most moms have to face every single day. And even me and Randall have made friends with two other girls. And the connecting factor is that all of our kids have Trach. And so we’re doing this podcast so that people won’t feel alone. And then there’s this other aspect of the world is clueless to how to treat disabled people.
Me and Randall have a million stories of people coming up to us doing highly offensive things that they don’t know are offensive or just annoying. The world doesn’t know how to treat disabled people. And that’s one of our goals, too, is to educate people. We even have a segment that we’re going to start doing called Dumb Things People Say. And it’s just funny.
I mean, it’s funny things people have said to us that we’re like, oh, I don’t really like that, but we kind of joke around about it and try to have fun, but also educating people. This is why you should never say this to a parent of a disabled kid or to a disabled person or whatever. So we have really fun plans for it. But that’s kind of my why for this. Randall’s might be a little different.
It’s very similar. Just basically I just want to be a resource for people that are in similar situations to us. Just being a resource for caregivers that are raising disabled and also, like Deonna said, educating everyone. Because this podcast, we want to be a resource for everyone, not just the disabled community. My biggest reason for this is just to share and to create a community and let everyone we want people to know that everybody belongs.
That’s our biggest thing is everybody belongs. And we’re just so excited. There’s so many new things, there’s so many things to come and we have so many ideas. Like when we very first sat down to talk about ideas, we have topics like we could just go on and on and so it’s and like Deonna said earlier, there’s not a lot of when we started searching ourselves for podcasts and resources similar to ours, we really couldn’t find a lot. There’s definitely a lot of specifics out there, like specifically for certain diagnoses or things like just such we just really wanted to reach out to a broad audience and talk about a lot of different topics and try to just educate people on.
Just like our recording with you about child life, there’s so many topics that we were wanting to hit on that are just education for everyone and just increase knowledge and how to better treat our children us things not to say. I feel like with each episode that we do, I personally learn something new. So it’s just exciting.
We’re just newbies at it. You guys are doing so well. I love listening to it. It’s so relatable. You all are hilarious.
I love hearing your accents and we feel like we’re friends already. And I just thank you for allowing me to interview you and share pieces of things that are so intimate to your life for the sake of others, feeling less isolated, it really makes such a difference. So thank you to here. I just want to say your podcast is about child life and what it is. And we were talking about this in our episode where we interview you, but child life is this thing that is so valuable and I feel like so many people don’t know what it is.
And it was this experience that got us through this five month stay and it was this thing to look forward to. And my daughter, all the pictures we took from that experience, Child Life On Call was in the pictures, they were in the room. All the videos they made. Her fifth birthday. This fun memory when it could have been so hard.
And so we’re just thankful to you and all the other people who do what you do. Because it was this massive thing for us that I don’t think Child Life On Call people understand exactly how big and life changing. Just their presence in the room and their little crafts or whatever it is, their music, the dogs, all these things were huge for us. And so if there’s other Child Life On Call people listening to you all do a really great work and we’re just so thankful for you guys. Thank you.
Child Life On Call helped with my sanity so much. My husband was gone a lot during our husband. Like, he was gone for a week, and he would work for a week and then come home and then come to Houston for a week and then back and forth. And so I spent a lot of time just alone having these crafts and even the big moments, like first time outside at a year old and the discharge parade, but just little things. Like, I remember our first Halloween, we had just been transferred.
Two days later, it’s Halloween, which is also my husband’s birthday, and Child Life On Call brings us this little craft and it was just like, huge. We got to do her little footprints. And I remember just thinking like, okay, we can still have these special moments. That was kind of our first experience with Child Life On Call. And then we had so many more over our long hospitalization and still do when we’re inpatient.
You guys are amazing. And I honestly didn’t even know anything. Like, I didn’t realize the work and work that you guys do. And so I’m so glad that you’re doing this and I hope that.
You. Guys get the word out there and we can’t wait to share Child Life On Call with our listeners. Well, thank you so much. It’s a complete privilege to do what we do. We pinch ourselves most days going, oh, my gosh, it’s so humbling to be with families in their darkest moments and give a little bit of light.
And so thank you for letting us do that and welcoming the Child Life On Call specialists into your team because I do like to advocate. Like, when a parent tells me that it’s not a good time, I’m like, you go, Mama. We’re not offended by that. We want them to use their voice, and if they want to practice on us, we’re not babysitters in the hospital. But for sure, if I can give you a break to go get coffee, then that is my favorite priority.
Ask us because we want to be there for the whole family. And we didn’t even mention siblings during this. So you can go listen to the Raising Disabled podcast episode that I was on to talk all about siblings, but you all are awesome. Thank you so much for being here and I’m just so appreciative. Thank you all so much for listening to Child Life On Call.
If you head to our website, Child Life On Calloncall.com, you’re going to find all sorts of stuff there for parents, professionals, healthcare providers, Child Life On Call specialists. No matter who you are, actually, when you just go to our homepage, it’ll tell you. It’ll help you direct to exactly where you need to go. On that, you’ll find opportunities and PDUs for child life specialists, parents. We’ve got a starter kit for you.
And clinicians. We even have a clinician course which teaches you how to be a confident and capable caregiver pediatrics. We’re so grateful that you’re here. Please DM us on instagram. And like I mentioned, when you rate and review this podcast, it helps other families be able to find us.
So let’s keep doing that and I will see you again here next week.
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