Latest / Numotion Ally Program Podcast / Bladder Chatter With Jenny: Extraordinary Ordinary Women
Transcript
- Leah Holderbaum: Welcome to the Ally Program Podcast, which is a peer-to-peer network we just started to build from coast to coast. The goal is to connect the patient, the caregiver, the case manager, to a community. Today I'm joined by Jenny, an extraordinary, ordinary woman. We're talking real-life caregiving, advocacy, laughter, resilience. Whether you're a parent, a provider, or a friend, you'll find something here that resonates. So, Jenny, tell us a little bit about. yourself. So my name is Jenny, 45-year-old mom of two. My oldest is 12. And my youngest, who is my special needs daughter, is six. She'll she'll be seven in October. And I've been married for going on almost 15 years now. Nice. Nice. Full-time working mom. Doing it all, right? Yes. Trying to. Yeah. Can you share a little bit more about your daughters? Yeah, so my oldest daughter Sloane is like I said, she's twelve. she likes sports, she loves being outside, she she's into pickleball. being a big sister is a really big deal to her, but being a a big s sister to a special needs sibling is the biggest deal to her. And she wants everybody to know about her sister. And sometimes we even have to remind her, you're important too, your identity. You know, it doesn't just lie in your sister. It's it's within you too. Like you're important too. Yeah. No, absolutely. And and what about Everett? my gosh. So, yeah, like I said, Everett will be seven October first. she is a ball of energy. they said she may never walk or talk. She runs, she climbs. She just ran from me on Sunday. We live on a river. She ran all the way down to the river and it was all I could do to catch her. She got in a lot of trouble. she is this time of year, she gets ready to go back to school. She's out of her norm, she's out of her structure, so it's it's really hard for her, but so smart and just she just keeps breaking the What do you say? The glass ceiling. She keeps like she just keeps amazing us, talking in sentences, that's new for us. Like I said, they the geneticists they give you worst case scenario a lot of times. She never she may never walk or talk and she has really surpassed. We're ready for her to be in Special Olympics because my husband wants to bet on her in Special Olympics. So what what has you you've talked about it a little bit, what has the journey looked like? for you with Everett. starting from the beginning. We had no idea what we were in for, of course. As that's any parent with any child. You just you have no idea what their future holds. And I think that's the biggest reminder. My sister told me because just like you see with people with Down syndrome, our kids can suffer from cardiomyopathy, they can or develop it, they can have seizures, they can have kidney failure and th there's all these things that are possible, but I just remember my sister telling me one day, you don't know what tomorrow hold holds for any of us. So to look at those negative things is just you can't focus on that. You have to focus on the cans and what she can do. So that's what we've tried to do and that's what she has shown us. everything she can do and that she just we're just shocked at every milestone she meets. And many special needs parents all agree with this. Each milestone our kids have are that much sweeter. Yeah. You know? They are so sweet and they're so much better. And not that Slun's milestones weren't great and important, but You know, when it whenever it gets to hers, it's a really big deal for the whole family. Absolutely. Absolutely. And and you just went to a conference. Yes. Over this. You wanna and we were talking about it earlier. Can you explain it for us as well? my gosh. so for a overview, and I actually wrote this recently on social media. This conference going into a diagnosis like this. We got her diagnosis, like I said, at one or I hadn't said that, sorry. She was one years old. One year old when we got her diagnosis. And there was there it still is. There's not much known about one P three six deletion syndrome. It's only been honestly, I guess you say diagnosed since nineteen ninety nine. Okay. That is the year that they've discovered this and it that's what they called it. It is 1P three six deletion syndrome. It's a deletion in the short arm of their chromosomes. And just like other special needs individuals, it can affect them greatly or smaller or it depends on what their exact deletion is. So going in, we were given her worst case scenario. And that's one of the things they talked about at conference is, you know, how it varies. And when These geneticists, and I have great respect for them, right? I mean absolutely their education, their training, they went through many years, but so many of us got a diagnosis in such a poor manner. Our they gave us our diagnosis in such a poor manner. Right. And in doing that, the it it was like they were telling me my child had the flu. They had somebody that worked the front desk at the office. Call me on a Friday afternoon while I was sitting at my desk to tell me that my daughter was diagnosed with this syndrome. And I remember jotting it down and I Googled it and I'm like, what is this? Yeah. All these things come up. And when that happened, you know, we that was a pretty hard weekend. That was a Friday afternoon. Yeah. That was a fright. And I was shocked at conference to learn that I was not the only parent that received. Diagnosis like just like everyday business. There was a dentist that talked, he was there, and he has a child with 1P36 deletion syndrome, and he said he was one of the speakers on the panel. And he said, you know, you would think they would call you and say, Are you driving? Are you alone? Is anyone with you? Yeah. And so that was the biggest deal about this conference is knowing we're not alone. The other big deal is when you're a special needs parent, it's feeling your way through the dark. Yeah. It is like feeling your way through the dark and they for without a flashlight, without a map, without anything, and this conference was like giving me a GPS, you know, somewhere to actually start. And I loved that. I it was just and connecting with other parents. Absolutely. Wonderful. Yeah. Found that there were others going through same thing, if not similar. bringing it back full circle. Exactly. That's amazing. That's amazing. How many days was it? So three days. Okay. It was three days. we could have we started on a Friday afternoon. Let me get this straight. Nope. Thursday afternoon. Okay. All day Friday. I'm sorry. And then all day Saturday. Gotcha. Yeah, we kind of convened on it. It was really good. Like I said, thankfully my husband was with me. I sat on in on most of the panels and the presentations by the specialists and doctors and such and my husband was able to take Everett and my older daughter and they went and they had it at Morgan Wonderland. Have you heard of that? Have you all heard of that? It's pretty neat. Yeah. Yeah. So they had it at Morgan's Wonderland and so the speakers were inside this beautifully air conditioned building. And then my husband and my daughters went out and played in the park. And but the information that I got listening to all of them was just priceless. Like I said, it was my GPS. Yeah. Yeah. that's amazing. That's beautiful. Like you had a pick of one thing that stood out. You're you're big like, man, wow. The behavioral therapist. Okay. Okay. The behavioral therapist. Because Everett has certain like she is supposed to wear glasses, but she won't wear glasses. And this therapist, he was so great. I believe his name is Jason Marshall. He's out of California. I mean, why does he have to be in California? Why can't he be in Texas? Right. So I want to fly to California. But he was excellent. And he talked about, and I'll I won't say it as eloquently, but more or less when they act out, that's their attempts at communication. Right, because their communication's a big it's a big barrier for them. They don't know how to get it from here to here. Doesn't mean they're not smart. they just it they have a hard time doing it. And he told this really he told a couple of great stories about things that have happened in his career and one of the ones I came back telling my whole family, he had a kid that would wake up every morning. And he would make his mom mad as quick as he could. That he was nonverbal. Mm-hmm. And he had a mnemonic device that had words on it. And he would. He would just make her mad. He loved making her mad. And so the therapist picked up on that pretty quickly. But the mom was there trying to get him, like she didn't realize that. So he takes the young man in the other room and he was like, Why are you making your mom mad, man? Like he just talks to him regularly, right? And so The kid gets his mnemonic device and he presses purple. And so this therapist was like, What? So he's like, he goes back with the mom and the son, he puts them together and he was like, I wanna see him make you mad. I wanna see what happens. And he does, and the mom's face turns purple. And he likes the color purple. This is a true story. And so he would do that, so she would tear purple. And it's just like so We relate, this is crazy. So my daughter is tube fed. She's on all liquids. And she has a very sensitive gag reflex. Like we can even say gag in front of her. We're like, she's G-A-G-N. Yeah. That's what we say around the house. And so we take her outside when she does that. Well, she's learned she gets to go outside when she does that. Yes. So this therapist, so we have to rework that, right? Absolutely. Hearing this therapist, but hearing it I mean, it was just wonderful. But that's one of the things I want to do is establish a behavioral therapist in the Houston area so she can she needs to wear her glasses. We've gotta work on dental health. We have a dentist appointment Monday, y'all pray for us. But she's got you know, I want her to wear her glasses and you know, she'd be surprised at what all she'll see. She just doesn't want to wear They're cute. Yeah. Cute is not the selling point on this one, is it? No. She doesn't care. Well, you know, becoming a caregiver and an advocate happens overnight sometimes, right? Ready or not. Let's talk about what that transition felt like for you. What surprised you most about stepping into this new role as a caregiver and an advocate for Everett? my gosh. I don't even know where to start on that. when she was born, everything was off. I mean, and when I say off, I mean she didn't eat, she didn't sleep, right? So that caregiver role started automatically. Yeah. And it was hard. My mom pretty much lived with us for six to eight months. It was thank God she she was close by, but we wouldn't have survived without my mom. And it was so hard everything from her feedings that was before she had a feeding tube. Again, we didn't have diagnosis. We didn't know. And I remember her being only three or four months old and she wouldn't eat. And I remember standing in the baby formula aisle at our local H E B, and this is honest to God truth. I I cussed and I cried and I prayed. And standing there look I was looking for answers. God Tell me what she needs, because I didn't know. And you just when you're that lost and we ended up with a sensitive stomach formula. Right. And that got her on the right track. And then we found out she had reflux. That was a fight with the doctor because the doctor said she's too little to have reflux. I I've I've fired some pediatricians. I have. I've been through some specialists and we did. We we had we learned to become our caregiver before we got a diagnosis. Yeah. She was a year and a week old when we got a diagnosis. But and as much as that hurt and was life changing, with a diagnosis came answers and solutions, right? And early intervention. Yeah. Absolutely. Yeah. Absolutely. Mm. So you were you were th thrust into it. You were thrown into it. And then like you said we're a family, right? I mean You don't get to just tap out. You want to. Well, you know, I think one of the big things is having a child already and then, you know, you're you d had a compare and contrast. Yes, that's hard. Over that too. Yes. Because in Everett took so and does take so much time. Yeah. You know? Well, and and I guess you found yourself becoming your the voice for for Everett. And how did how did that, how did you find that voice? Did it happen before the diagnosis? Yes. After? Yes. Like I said, during all the times? I was trying to take her the you know, our twelve year old, she has had very few medical issues. She had like one stint in the hospital when she was seven months old for a week long she had R S V. yeah. Okay. And so, you know, you kinda find your voice then in 'cause you know and then whenever it came along You're just looking for answers. Why isn't she sleeping? Why isn't she eating? Like everything was just way off. And the more you dig, so I was like, I know what's wrong. She has reflux. So I go to her pediatrician at the time and I'm like, hey, she's got reflux. And the doctor was like, She's too young. She doesn't have reflux. And I'm like, I'm telling you, she does. And I'm not leaving here without medicine. I mean, I've you just you have to be firm. You have to be if They don't live with our children. They don't know. And we expect them to be godlike, I guess, and all knowing. I found that the good specialists and the good pediatricians, they'll when I tell them, Thank you for listening to me, because I will, I'll say it. And they'll say, Well, you're her mom. You live with her. You know. Yeah. We have to go off of what you say, which can be hard sometimes, right? With a nonverbal child. So absolutely. Absolutely. Yeah. So that you I found my voice Pretty early on. And I went through two or three neurologists. Okay. I went through two or three neurologists. That's when we were like, something's off, something's not right. Like, and this is so funny, I always say this. Like, she's beautiful and she's perfect to me. But hindsight's 2020, right? And I have moms, my other special needs moms or friends that are have special needs children. They'll tell me. You know, she has the markers, you know, she had the low ears and her little nose and like their little eyes are different. And not my I mean, my mo my mommy goggles were fun. I was like, she is perfect. Like I know what y'all are talking about. Yeah, I mean, and even to this day, I'm like, but and that brings me to this. I'm sorry, like this I remember the first time I realized people thought she looked different. We were at the zoo. My mom and I had taken her to the zoo and these children had stopped and they were looking at her. And I was like, What are they looking at? And they were, they were staring at her. And I told my mom later, I said, Mom, they were staring at Everett. And she said, I know. You know, and that was hard. Yeah. That was really hard that day. Yeah. Did you say anything or it was just more It was after diagnosis. Yeah. And I was still thinking other people don't know and other people don't see it. But they did. Yeah. They did. They saw it and they knew. But the these children stopped and they they knew she was different, you know, and now people stare because she's loud and she screams. But she does. She's so loud. but yeah. And and what's normally your response back when they when they're staring? with kids I try to be it's really hard, right? So we were all kids once and when we saw something different, I don't know if I always handled it correctly, handled the situation correctly. And so I try to tell her, Say hi, Everett, and you know, and they warm up to her. But I will say this, she's at our local school district and those kids have been so sweet with her. If we see out in public we saw we saw a little girl one day and she was like, Mama, that's Everett, she's a crazy girl. And it I laughed. was like, you do know Everett. That is great. That is great. Well, you know, we've talked a little bit about how no one does this alone. Whether it's family, faith, or friendships, support makes the difference. Let's talk about yours. You've talked about your mom. You're gonna make me cry. I am married. my husband is he's a very hands on dad, so Thank you, Lord, for that. Yeah. my parents are very hands-on grandparents. They if they're not watching her, they wanna come over and see both of my girls once a day. I have really sweet friends. I have a best friend that I've had for years, Gretchen. She she's very involved. My sister doesn't live here, but every time she's in, she she's always actually my daughter has her name say her name's Everett Kelly and my sister's name's Kelly. But we have very involved family and friends and even our church, when they see Everett, they love her and they've just been s it's been so sweet to watch people love her and accept her and not that they wouldn't, but you just never know as a parent, you're always looking for that place for your child to belong. Absolutely. No matter whether they have a disability or not, we want our children to belong. And just the love that that she's been given and shown. e we even have cousins and second cousins. They love her so much. And she's a pretty big deal. And not just our immediate family, but our bigger family. She's all her cousins are really sweet and good to her, both set the All of her grandparents, it it truly takes a village. We have an amazing caregiver, Carly, and we only have her some during the summer. And we have her right now. But she graduated from college and she's already been working at a school district. She's in the speech therapy field and we'll be losing her again soon. And she is so amazing. I mean, just It I think that's the biggest thing. Like that's the only shortcoming we've had is finding caregivers during the school year. You know, it's it's odd hours. It's before and mainly after school we're looking for. We've we've never really had anybody that we could find that can do it. Yeah. Yeah. 'Cause you mentioned you're you're working full time. Husband works full time, he does. So it's those few hours. Yes, my parents are retired, but both have been they've they've had things go on with their health and they were require my mom's been in treatment. So she had she requires her medical attention and it's so important. So you know, thankfully I've had a job that's been so understanding and good and I've had bosses and leadership that are so understanding with me taking time off when I need to. Absolutely. I love that. That's I mean huge, huge. It's important. Like that's really good leadership, right? Absolutely. You know? Absolutely. No. You know, sometimes we don't need advice. We just need someone who's been there. And so let's share some encouragement for the tough days. What would you say to a parent who just received life changing news and feels overwhelmed? I have I've actually had the privilege and been blessed and been able to share before. I've had friends tap into me, they're like, hey, I have this, this other friend, you know, can I talk to them? And I'm like, I've had this happen a couple times. And the biggest, the, the biggest things that I tell them, first and foremost, there's good days ahead. There are such good, sweet days ahead. And second, you will celebrate milestones. Absolutely. You will and comparison, third, comparison is the thief of joy. I love that saying. Brilliant. Yeah. And sorry, it's it's just those are the biggest. And I actually it was one of those God winks is what we call it in my Sunday school class. I had a mom, they were we were doing a field trip with some school kids, and I had a mom, she came up to me and she said It's nice to finally meet you. And she introduced herself by name. She was so sweet. And she said, I don't know if you remember, but you told me there's good days ahead and that milestones are that much sweeter. And she said, You were so right. And I I look back on that. But and I because I look back on what I wanted someone to tell me. Yeah. And I can tell you this. Brene's not here. I hope she's okay with me telling this. I I tell it and I've shared it. at church, I've shared it with anybody I could, but I'm a Christian. Brene's a Christian. And I had gotten Everett's diagnosis and I didn't know Brene very well. And it had only been a week. So my daughter was like a year and a week old. Yeah. So or maybe a year and two weeks old then, because we got her diagnosis at about a year and a week. And I ran into Brene at a sporting event and She had her daughter in her wheelchair and she pushes Sierra over to where Everett and I were. And Everett's in her stroller and she's just this tiny baby. And I said, Did you hear we got our diagnosis? She said, I did. And I was like, you know, I just shook my head. I was like, you know, I don't know. And I never I'd I had not voiced it then, up into that point. But I spent a week. Tussling with God, right? I'm like, how does my daughter achieve salvation? How does that work for my daughter? Because she can't I don't know that she'll be ever be able to to decide that. Yeah. And as Christians, that's our ultimate goal. And I'll never forget, like I didn't say that to Brene. I didn't. I was like, we got her diagnosis and she was like, Yeah, I heard. And she said, she looked at me and she said, Our daughters are pure. They are innocent. Absolutely. They have a straight ticket to heaven. And I'll never forget that. Like that was the biggest God week out of everything I needed to hear. She may never walk or talk, but I needed to hear that. And the Lord sent Brene to tell me that. I was gonna say they send people Yes. Yes. Yes. It was for me as a Christian, it was that's that's the only thing I worried about at first, you know. and then all the other worries drown you, right? Like they all come in and flood you. So Well, where do you go to refill your cup when caregiving gets exhausting? So this is so funny because Sunday was a really hard day. Like this time of year, ever she's so out of structure that she starts acting out. And she was. She ran from me in the yard. She ran like I said, we live on a river and she ran all the way down to the river and I was so upset with her. And I called my mom and I was just crying and I was like, You have to get over here. I need a break. And my mom got there. And do you know what I did? I I went and cleaned out my car. I vacuumed my car. I cleaned out my car and just sweat and I cried on the way there. And after I was done sweating, I was like, okay. And my husband came home from work and he took over. He's a shift worker. And you know, I got a break that day. It was so funny because I was so upset about her running for me and running to the river, right? Like And so all day Monday, I was still upset about it. And I was like, I'm so mad at her. And I got home and I heard her sweet little voice and I peeked around the corner and I just wanted to eat her up. Like I was kissing her and she just shoved me away. She didn't care. She was just like, it's only when she wants love. Like and I was just like, you know, you get over it like that. But I was so upset that Sunday was that day. Like I had to refill my cup. Yeah. But once a year I have sweet girlfriends from high school. or from school like all through school and we try to do a girls trip and that fills me back up. absolutely. when we finished at the conference we did a family vacation. That fills me back up. For sure. all of those anything and everything. my husband and I we try to grab dinner together when we can. But also he'll grab dinner with his guy friends after work. Yeah. I try to grab dinner with my friends. You know, in the evenings. It's hard. It's hard to get away, but it's so important. It's vital. It is. It is. Absolutely. No, I love that. That's so good. It's such a great way to reset. Trust me, every parent, your kids push you to a point sometimes you're like, I need some time. Sunday. I was I was so mad. Okay, go to this house. my goodness. Well, so even in the chaos, there are moments that make us laugh. Sometimes it's Because that's all we can do to lighten the mood a bit. Have you ever had a funnier awkward moment that helps you laugh through the chaos? So many. So many. you had to pick one. What would what would be her? I have a recent one. this was yesterday. And like I said, Everett's learning to talk and she's talking in sentences and we have a pickleball set at home. Sloane loves pickleball. So she had a friend over and they're gonna play pickleball. Whatever it goes up, she knows how to just work you. And so she g she'd been in trouble when she goes outside because she runs off. And she went up to my husband and she looked at him, she said, I wanna play kickleball. And so you know, we can't turn her down and then yeah, we took her out for kickleball and she ran off and got in trouble with and she had to go back in. But Yes, I mean, there's that. she would just say funny stuff and we're like Where did she get that from? Like how does she know? And she does. She just she makes us all laugh and her communication's just gone beyond what we thought it would be. Right. Yeah. And that that brings out some of the funny moments and and ways to make you laugh too. Yeah, those are I think refreshers too, right? For sure. Absolutely. Like, maybe we're doing something right. Yes, you are, you are. Well, being a parent changes you, but parenting a child with special needs can transform your outlook entirely. So let's explore that growth. What does strength in your household look like? my gosh. Well, first of all, physical. Yeah. she is she doesn't her core that's they have low muscle tone. A lot of one p three six individuals have low muscle tone. So but If she doesn't want to get up, she's not gonna get up. In the mornings, we have to get lift her out of bed. Well, she's almost forty pounds. So that means lifting her. it's too hard on my parents to do, but so that that isn't that mainly falls on my husband and I and should. so lifting her physically, getting her in and out of the vehicle. you know, when she's tired and falls asleep and we go to put her in bed. I mean, she's heavy. She is just solid. so like I said we go to church and my daughters and I, mainly Sloane and I but they have a place forever there. But renewing our strength in the Lord and just having that time at church each week, my spiritual strength yeah is what really helps me and my daughter. we both I just I couldn't do without the Lord. I don't I don't know what other people do and I don't you know that's okay if you don't know the Lord, but for people that are empty and looking, Jesus is the only way and that's he's gotten me through some really hard times with all this. Like I have so many stories of the things that he's done for us in the way that he has blessed us and he has really gotten us through some of the hard hardest days and Sundays are my days when even sometimes my par a lot of times my parents will say, we'll stay home and we'll watch her so you can go to church. Yeah. And it just it's the best thing for me. I need it. Yeah. Builds my keeps you going, right? Yes, yes. how have your daughters changed you as a woman, as a mom, as a human? In so many ways. Yes. in so many ways. Like I guess it's good and bad, but if I like see people just being mean, just to be mean, I can't help it. Like that I cannot help it. I say something and it it's probably not necessary. But I can't like it I don't put up with a lot of meanness for sport or for it it really I have a short fuse with that. Yeah. You know, especially with adults, I'm like, come on. Yes, yeah. Just you know. For sure. And so even this is so hypocritical, but like when someone's mean, I'm like, I'm like, I'll get even meaner because I'm like, I'm not putting up with this. Isn't that terrible? Not putting it. But it's honest. It's I'm just being honest. Like, I'm like, you want to get mean? Let's get mean. Because I don't like that. I don't like meanness. Only I can be mean. But no, I just I just can't stand the meanness. Yeah. Like, that's been the biggest thing as a mom of both of my girls. And I just I don't have a lot of patience with people that don't want to help themselves. For sure. I have a I have a lot of frustration with that and struggle with that. And sometimes it's poured over into my job, which isn't fair because I don't know what certain people have been through. But I'm also like there's nobody if you're if you're if you're bodily able and mentally able, you need to be able to Do these things and take care of yourself and because there's people that can't. Right. You know, and I think that's a lot of that's where my short fuse comes in. Yeah. My frustration. Yeah. No, absolutely. Yeah. Well, so with hopes and dreams, things like that, right? Talking about how this whole evolution has has come around. What do you want your daughters to carry with them as they grow? Not just the big picture, but right now. Today. First and foremost, Jesus. I do. with our faith, I want them to have Jesus every step of the way. second, I want them to be strong. I gave both of my daughters very strong names. There you go. Live up to your name. I did it. And and my oldest, I remind her of that. She was named after her great grandmother who raised nine kids during the depression. Wow. And her her middle name was Gray, and that was her her great great grandmother's middle name and like I said Everett Everett is named after my sister her middle name Everett Kelly. I gave them both strong names. You have to be strong in this world. Absolutely. You do. I mean that's the biggest thing is I want them to be strong women but also to have a relationship with the Lord. What do you think Sloane, your other daughter, would want to share with other siblings? In similar situations. So I love that I I was thinking about this on the way here. Yeah. if you want to and I've seen this quote, y'all probably seen it. If you want to know how to treat someone with a special needs or a disability, watch their siblings. yeah. And it is so true. Like she is the most amazing big sister. If she were sitting here, she wouldn't talk about how amazing she is and how much she loves her sister. She would talk about how amazing she thinks her sister is. And just Sloane's heart is the most amazing. And I I couldn't be more proud of her. Yeah. Uh-oh. No, you're fine. I couldn't be more proud. She's just the most amazing big sister. Yeah. You know, she just And it's funny 'cause whenever it's doing something she's not supposed to do, and she's like, Mom, I'm gonna spank her and I'm like, Spank her. We do shot she spikes her and I'm like, get her, girl. I do. my goodness. my goodness. Well, Jenny, I do wanna thank you for your time today and and sharing a bit of your your heart and love and all the things that make your your daughter shine and you shine too as a mom. Like th this has been absolutely heartwarming and and touching. If this only reaches one other special needs family, it's so worth it. Absolutely. It is so worth it. Absolutely. Because when you're lost on that journey to hear somebody else, it is like to know it's gonna be okay. Yeah. And that there's good days ahead. Yeah. And the milestones are that much sweeter. For sure. For sure. I love that. And and you had said that in the beginning too. This is Jenny with the Ally Program podcast series. Until next time, keep leading with compassion, holding space for others, and yes, laughing through the mess when you can