Rhandyl: 

Hey y'all, this is Rhandyl, and today we have our first guest on. Amber Teal started raising disabled a few years ago with her son Henry. And Amber and I were actually childhood friends and we've remained in touch over the last 15 years. Her and her family also live in Lubbock, Texas where Deonna and I currently live. So Amber tell us a little bit about you and your family. 

Amber:

Hi, I'm Amber Teal, and I'm so excited to be on this podcast. I just wanna thank you and Deonna for having me on. It's such an, such an honor to share this with you, and it takes vulnerability, so I really give it to y'all. Y'all are doing a wonderful service. Oh, thanks. Thank you. …to not only, you know, families who have kids with disabilities, but to typical families. So I just wanna thank y’all.

But yes, I live in Lubbock with my husband Slade, who's a cotton farmer, and I'm an attorney here in town. And we have our two kiddos, Henry, who is four, and Willa who will be a year next week.

Deonna:

Okay, so when and how did you find out about your child's diagnosis? 

Amber:

So when I got pregnant in 2019, we had had our first anatomy scan, I think about 18 weeks. And at that time they found a kidney anomaly. They said, we're only seeing one kidney and so at that point, you know, I was..It was already a shock. Yeah, it was kind of, I was in disbelief, you know, you're in shock. You're like, how did this happen? And so at that point they said, we need to do some more scans. We wanna make sure, because a lot of times with kidney anomalies come something with the heart. Oh, so then, oh, I didn't know that.

So then we were doing some more heart scans to make sure everything was, the heart was okay. And so at that point they were like, the heart looks great. So you think, okay, I'm  like I'm just gonna have this kidney anomaly. No, he won't play contact sports, you know, I didn't want him to play football anyway.

Yeah. So then we move into January, and I'm due at the end of March and we move into January and it was supposed to be my last scan, and we were actually having the inside of our house painted, because you know that nesting… Oh yeah, yeah. Kicks in. I'm like, you have to make everything perfect. Absolutely. We've gotta have the house repainted. And so, because he's your oldest, so Yes. Yeah. Mm-hmm. So we were having the house repainted and it was my last anatomy scan, and Slade’s like, it's like, “well, you know the painters are here..” And I said, don't worry about coming. I'll just go, and I ended up inviting my mom and my mother-in-law to come with me for this last anatomy scan. Cause it was the first grandchild on each side. Yeah. Yeah. Understandable. Yeah. I thought it would be special. It's supposed to be fun. Yeah. Thought it'd be special for them to get to see him. Yeah. You know, on the screen. Sure. Yeah. 

So we're in the anatomy scan and it's going fine. And then she goes through, you know, they're finding everything, you know, the heartbeat and all the things that you go through. And then it concludes and she leaves the room and she says, “I'm gonna go get the doctor.” And at that point, Aw man, I, you kind, I kind of knew at this point, you know when they're going to go something, something’s up. Yeah. And then they were gone a long, long time. And I looked at 'em, I looked at my mom and my mother-in-law and I said, something's not right. Yeah. And so then, the whole team. Oh gosh… just comes in the room, you know? 

Deonna: 

I feel like with more people, yeah, it's like more problems, you know..

Amber:

it's like two, the two maternal fetal specialists, you know, and the practice come in and then the nurses come in or you know, I don't know if they were nurses, but you know, more, more of the, there's tons of medical staff. Yeah. Yeah. They're in there. Yeah. And they said he's missing his radial bones in his arms. And I was, you know, just trying to take this information in. I'm like, you know, can you be wrong? And they were like..

Deonna:

What does that even mean? 

Amber:

So you have three bones in your arms. You have your humorous Yeah. And then you have the radial and you have the ulna. Okay. So he was, 

Deonna and Rhandyl: 

..so the radial's like between the hand and your elbow basically? Yeah. It's like a part of your forearm? 

Amber:

Yes. Okay. So he is, they said he was missing his radial bones and they couldn't find five fingers. So he only had four digits. Oh, okay. So we're looking at that and they thought it was part of a larger syndrome because he had the kidney anomaly. Mm. Yeah. He also had the defect with his arms.. like a whole new problem. So they thought he had TAR syndrome, which is thrombocytopenia-absent radial syndrome.

Rhandyl:

And I told you this in the anatomy scan. Yes. They like diagnosed him with TAR syndrome that day.

Amber:

They said that day and I said, how confident are you that he has the syndrome? And they said, we're about 80% confident. There's some other syndromes associated with this. But they said, we're 80% confident that it's this syndrome.

Deonna:

Okay. That's pretty bold.  

Amber:

So at that point, you know, I called my husband and I said, get the painters out of the house. Yeah, I've, I've gotta tell you something. Yeah. And so we go home and…

Rhandyl:

Did you go home just by yourself? 

Amber:

No, my mother-in-law and my mom Okay. Followed, you know, we all went back to the house together and we just, the longest car ride ever, and I'm just telling him, I just said, just get 'em outta the house. Yeah. So we're getting there and they're getting outta the house and we're having this conversation and it's just grief. Yeah. You know? Yeah. Because you're mourning what you know. Yeah. You're mourning. Yeah. Because you think, just like you talked about Holland and that poem. Mm-hmm. You, you think you're going on one journey and then in a matter of a few minutes Yeah. Your path is diverted and you're going on a different journey. Yeah. 

And so with that, we just, we just grieved it. We were in shock and we just cried out in our grief like, What, how, how is this gonna work? How are we gonna parent this child? Yeah. You know, what is this gonna look like? What is his life gonna look like? Mm-hmm. How are we gonna do this? Yeah. And so from there I was in, you know, we had NSTs, you know, the non-stress tests like every other day they saw issues with my fluid. They saw some issues with my umbilical cord maybe some fluid issues. So I'm at the maternal fetal specialist almost, it seems like at least two to three times per day for scans, checking fluid Oh man. And things like that. And they, they thought, well, because of what he, this platelet issue they thought he had, they thought we would schedule a C-section. Mm-hmm. And so I was a scheduled C-section. Okay. 

Deonna:

Did everyone in your life know this was happening? Like did y'all tell everybody? 

Amber:

No. At the beginning, because we wanted to grieve this. Yeah, sure. Just kind of private you know. 

Deonna:

Cause people would've treated you different, I would assume. I don't know, but I mean, yeah..

Amber:

..and of course we have to tell people eventually, but we just took a while to just grieve it and kind of get our game plan and yeah, just wrap your head around the whole Yeah. I mean, because yeah, it's hard to talk about that stuff even now, I can tell

Rhandyl:

Just wrapping your head around it, but then also like, you know, you tell the world and they, everybody has all these questions that you can't answer. Yeah. Like you, especially then, because I mean, yeah, they were 80% sure, but you still had, I'm sure that you probably both still had hope that, oh no, like, They're not, it's, it's just a ultrasound picture. Like it could be…

Deonna:

I've never relied on them. I mean, when I would see those, I was like, you know, I never relied on the way those looks, so That's so crazy to have to rely on it the way they were making you do.

Amber:

Which, and they offered a second opinion. We didn't take the second opinion, but even, you know, we thought Okay, we were even praying. Of course. Sure. Up until the moment I'm having my C-section. Yeah. I am. Praying, God let this cup pass from me. Mm-hmm. You know, please just tell him in the womb. And it Yeah. It didn't, God didn't answer my prayer that way.

Yeah. But he answered it in so many other ways. Yeah. And so that's kind of how he found where it started. Where it started. It started, he didn't actually end up having TAR, which I'm sure we, we can get into now or later. 

Rhandyl:

Yeah. Go. I mean I'm very interested in how they figured that he didn't either he didn't have what they thought he had, what his actual diagnosis is, you know, just kind of fill us in on all of that. 

Amber:

So he didn't end up having TAR, so we were in NICU. He had issues with his lungs and breathing and we were in the, 

Rhandyl:

But he was born without his Yes. Forearms. His like radial/radius.

Amber:

Yes. He was missing the radial bones in his arms and he had four digits. Yeah. And two of them are webbed together. Okay. Okay. And so, and then he did have the kidney anomaly. He actually ended up having two kidneys. They're just fused together and they're on the same side of the spine. Oh, wild. But he has normal kidney function.

Deonna:

Oh. Oh, that's great. Yeah, I was assuming that he didn't, based off what you're saying, so that's cool. 

Amber:

But he has normal kidney function and it wasn't until we did you know, Genetic testing through Cooks that we found out he has a different syndrome, which is called Duane-radial ray syndrome. He just doesn't have the eye problem that's associated with Duane-radial, that those kiddos normally have a like a eye problem. But he, that did not  express itself in the genetic mutation. 

Rhandyl:

That's cool. Yeah. So I mean, that's not cool, but like that's one less thing too. Yeah. One less. Yeah. Yeah. So  how, I guess when you say  they originally thought he had TAR syndrome compared to, I can't even pronounce what he, his syndrome is now so, yeah, but I'm assuming TAR syndrome, is it more common than what he has now? Like what he actually has, or 

Amber:

TAR is actually more common than, than what he has now. 

Rhandyl:

Okay. because I've heard of tar, but I've never, I've never heard of, of what Henry has. So I would assume that's probably part of the reason that he was originally misdiagnosed in utero, is because it wasn't as common of a syndrome, you know?

Deonna:

Yes. And it happened to all three of us. All of our kids were told we had, they had one thing. Mm-hmm. And then later you find out that was wrong and, and you know, just way what goes. 

Amber:

That took months to find out. Oh yeah. It was so with us. 

Rhandyl:

So was it genetic or is it congenital or..?

Amber:

yes, it was genetic. So it was a genetic mutation. Okay. Of the SALL 4 gene, S A L 4? Yes. SALL 4

Deonna:

My goodness. I don't know anything about that stuff. You do now!

Amber:

I do now but I didn’t then.

Rhandyl:

Did they give you guys like, I mean, because I, so I'm asking this because Remi was originally diagnosed with this syndrome that I've talked, I think I've talked about it and it's the FAT4 gene that they thought had mutated or not necessarily mutated, but we, Cole and I both had, we were recessive and then she got it and they told us we had a one in four chance of our children. Or if we had other children that we would have a one four chance of them getting the same, the same diagnosis or the same genome or whatever. I don't know all the genetics, but So what did they, did they tell you guys anything like that? 

Amber:

Yes. So his mutated on its own. Oh, okay. So it was, it wasn't hereditary. Oh, okay. Or anything like that. Like, you know, autosomal recessive or autosomal dominant, like one in four versus, you know, yeah. half chance or 25 or 60. So his just mutated, like it's mutated on its own. Okay. It wasn't anything that we had. Right. Oh, okay. To, so 

Rhandyl:

I guess when you hear genetic, yeah. You just automatically, people assume it, I mean, I guess I do too, that when you hear the word genetic, that that means that it is hereditary, but it's not. 

Amber:

Now, if he would have kids, then his kids would have a one in like a 50% chance. Oh, of having the same passing that, yes. Passing it on..Okay. Because he has that full, yeah. Yeah. Right. Okay.

Deonna:

Okay. So for those of us who don't know about your child's diagnosis, which is gonna be most of the people listening, 

Rhandyl:

I can even pronounce it and she said it like five times. 

Deonna:

How would you give us like this fifth grade level understanding of just what it means, what he's kind of going through every day?

Amber:

Basically he just has radial club hands. Yeah. I think that's like an easy way to say what he has. He has radial club hands. You know, when he was born, his wrists were turned inward. Okay. And he had of course, the fingers that were webbed together. But that's kind of how, what, how it presented at birth. Yeah.

Rhandyl:

But otherwise, just his upper extremities, and his kidneys, everything else was anatomically normal?

Amber:

Yes. Correct. Yes. Everything else, he, he has shortened ulna and humorous bones. Mm-hmm. So his arms are, are shortened. Yeah. Mm-hmm. And then he does have an elbow, but his elbow, of course, is higher up. Mm-hmm. And right. His, his shoulders aren't in socket. And then oh wow. But so his range of motions, 

Deonna:

..his range, that's what I was wondering is like, is his range of motion good or does he have to get like, a lot of therapy or how's that work? 

Amber:

Yeah, he's in physical and occupational therapy yeah. And he has a bicep, but his bicep isn't  like a typical bicep. So it's, yeah. It, it's just a weakened bicep, so he can't move his elbow the way you and I, but his legs are fine. Like he's walking and things like that. Yes. I mean, he has, he has normal he walks normally. Yeah. Other than he falls a lot. He can't catch himself. Yeah. And so when he falls, he falls so far, so hard and he hits his face and it just, poor baby, poor thing. It's a hard fall. So, you know, when he was learning to walk it was…

Rhandyl:

yeah, I was gonna say like, so, ouch. I was gonna bring that up actually cuz I followed, um, Amber's story, cuz obviously we knew each other forever. But I've followed Amber and Henry's story. And tell us a little bit about the surgeries that he's had. He's had, because he's already had like how many surgeries has he had now? And he's only four. 

Amber:

He's had, we'll, we'll go for our six orthopedic surgery at the Paley Institute in August.

Deonna and Rhandyl:

Where's that at? And where's that? 

Amber:

That's in West Palm Beach, Florida. 

Rhandyl:

Oh, okay. Is that where he said all of his. Surgeries. His ortho surgery? 

Amber:

Yes. He's had all of his ortho surgeries in West Palm at the Paley Institute.

Rhandyl:

So when was his first one? Kind of run us through, I mean through that whole thing. And like what, how they're like, like what are they doing and I mean…

Amber:

Well, you know, you think about how, you know, when you get a diagnosis like this. Yeah. You know, you, 

Rhandyl:

What did they tell you? He could, he's not gonna be able to do this and that. 

Amber:

We just, we didn't know, you know? Yeah. You just don't really, you, we just didn't know every kid who has, you know, radial club hands or, you know, every kid at presents differently for each kid. Gotcha. And so when you get this kind of diagnosis, you're like, the first thing you know I'm going to is the internet.

Yeah. And I think, moms. You know, we do better research, than the FBI sometimes. Yeah, I think you're right. I found the Paley Institute online cuz I really think, you know, there's no rock I wouldn't unturn that y'all wouldn't unturn for our kids to find. Help to, to find help to anything a solution, hope. Yeah. Whatever you can find, we're gonna search for it. Yeah. And so I'd found the Paley Institute  through, a Facebook community and parents who had kids with similar diagnosis's, right? And so we, we made an appointment there about four months was our first appointment. Is, oh, he was four months old when he was four months old. Okay. Whoa. 

And so at that point they recommended later, not at four months. Mm-hmm. We did it when he was 18 months. But they recommended ulnarization and pollicization. So ulnarization would turn his wrists outward out. Yeah. Cause they were turned inward and then pollicization, they would unweb these fingers. Mm-hmm. And make him a thumb. So they unweb them and then they moved that digit over into a thumb position to give him like a post. So gripping. Yeah. Yeah. He doesn't have a lot of muscle movement in the thumb. Mm-hmm. But the thumb is really a post. So it gives him a lot more functionality.

Deonna:

Oh yeah. Yeah. That makes sense. 

Amber:

And that was our, our goal in all of this was to give him function. Function. Yeah. Yeah. 

Rhandyl:

That makes sense for sure. So I know you were talking about like whenever he was learning to walk. I, I think I remember him having a lot of breaks like even after like post surgeries because he was learning to walk like any typical toddler and falling and bless his heart, he can't catch himself except with his face or his arms that were recently surgically, like had surgery on.

Amber:

Yeah. Well one of his first breaks actually occurred while we were still in Florida. Oh, oh my gosh. At least we were still there. We were packing up and we were getting ready to go home. Oh my gosh. And the timing of stuff is wild. We're packing up and we're getting into go home and he is kind of learning to walk and he just kind of falls into the couch. And how was it, did it even seem like a hard fall? No, it wasn't a hard fall. He cried for a little bit and then, you know, he's, but he didn't actually, was it his arm? Oh, that was Arm. Oh. And so oh man. We're like, this isn't, something's not right. Yeah. 

At first I thought it was his fingers, so they X-rayed those, it wasn't his fingers. And then finally they X-rayed the arm and sure enough, his, his ulna had broken. So my goodness. They're like, we just worked on that and now we're. Did he go back in? they didn't have to do, oh, she said, oh, oh. She said, it's not gonna affect anything. We're just gonna splint you up. He'll go home. Heal is normal. Okay. I thought they had to like just reopen him right there. 

No. And then a few months later we get home and he had another break. And then the day of Christmas, you know, we're at my mom's, this is, this would be the third break and he was walking on carpet and fell and broke his arm on Christmas Day. Oh. But at this point, like that sounds, sounds about right. 

Rhandyl:

Yeah. Sounds was like your own little Christmas story maybe that you got going on there.

Amber:

But we knew it was broke, but we thought we're not going to  the ER tonight. We'll just go in the ER in the morning. 

Deonna:

Yeah. I feel like bad stuff happens on holidays all the time. Right. Thank goodness. 

Okay, so me and Rhandyl both know very well, like, stress goes along with this. It's an everyday thing. Like how did you handle the stress of all that at the beginning and, you know, did your family members handle that diagnosis well, or the stress of it? Well, I mean, it ripples out so big and so like, how'd y'all handle that?

Amber:

So I think each person handles. A diagnosis differently. Oh, for sure. But at first you're just. You know, grieving. Yeah. And you're crying out to God and your grief. And I had been so involved in, or I had been fortunate to, you know, be involved in my church and do some Bible studies and we even, I'd studied the Book of Job.

Mm-hmm. And I think Job is a great book to study for anyone who's going through trials Yeah. Through hard times. Or if you just wanna know the meaning of life. Which I believe is to glorify God in all that we do. Yeah. Right. And, and so, I had studied the Book of Job and I was looking at it and I thought, you know what? I'm not gonna ask why, because I think it's a hard question, and I think we all want to ask why. Mm-hmm. Did this happen? Yeah. But that's not something that I still do. Yeah. That's not something we generally see on this side of on this side. Yeah. Mm-hmm. And it's hard. 

So I thought, I'm not gonna ask why, because even Job going through all that, he did, you know, losing his wealth, his family, his health, even at the end, you know, he, he kind of questioned God. And God came back and basically said, were you there when I created the universe? Mm-hmm. Yeah. And he goes, I love that part. That's one of my favorite parts. He goes through all of it and Job can just stand there and say, I mean, what do you say to the Creator of the universe? Like, no, I wasn't there. Yeah, I have no idea.

I have no idea why this happened. So I thought, I'm not gonna ask. Why, or that's something I try not to ask. So instead I was gonna ask God, what do you want to be to me during this time? Yeah. What do you wanna be to me? That's a good question. Yeah. And so I prayed about it and I asked God, what do you wanna be to me during this time? And he said, okay, I'm gonna encourage you. I'm gonna sustain you. 

Yeah. And you know, after Henry was born, It was such a hard time cuz you're grieving and you're trying to figure this out and you're cultivating on how to be an advocate for your child that can't advocate for themselves and your…Oh, it's a  whole new learning experience. The whole advocating thing. Yeah. Yeah. You're, you're just figuring out..your personality changes overnight. You just don't know how to do this. And so I'm like, God, what do you wanna be to be there in the time cause I'm in this dark place and I could not, for the life of me, climb my way out of it. Mm-hmm. Yeah. I couldn't give myself a sermon. Like, it just, I tried. You tried? I tried and I, I tried, I couldn't get myself out of it. So I asked God, what do you want it to be to me during this time? He says, I'm gonna encourage you. I'm gonna sustain you. And he and I said, well, God, how, yeah. How are you gonna do this?

So I was making the appointment for Henry's first appointment at the Paley Institute, and I'm trying to navigate all this, trying to find a place to stay, make the flight, things like that. And this is the first time you went? Yeah, this is the first time I went at four months, so I'm postpartum Oh yeah, yeah. All things raging hormones. Trying to figure else. Yeah. So I'm calling the Hilton number to make this hotel reservation, and I thought I was calling  the direct hotel number, but instead I called  the main number. Yeah. Mm-hmm. I'm like, oh my gosh.

And so she's like, okay, where do you wanna stay? And I'm like, okay, you know, I need to book this hotel at West Palm Beach. And she's like, oh, okay. Um, Do you mind me asking, you know, why you're going? I said, yeah, sure. You know,  we're going for my, for my son, he has a doctor's appointment. And she said, well, do you, do you mind me asking, you know, which doctor? Like, why are you going? Yeah. And I said, we're, we're going to the Paley Institute. And she said, oh. And she said um, Do you, do you mind me now asking, you know, what kind of diagnosis you have for the Paley Institute? And I said, well, you know, my, my kid is missing his radial bones in his arms. Yeah. And she said, I was born without my radial bones.

Deonna and Rhandyl:

What? Are you kidding me? That's wild, the girl from Hilton? Yes. The girl from Hilton, who was that you randomly got ahold of cuz you called 800 number ticket. Oh my gosh. So I'm assuming she must have been to the Paley Institute. 

Amber:

She knew about it. She said she, she said, I know about it. I didn't have surgery there, but I knew about it. That's cool. And she said, I just wanna encourage you. Your kid is gonna do great things. You know, it's not gonna hold him back like it's gonna be okay. And so I was like, you don't understand. You just answered my prayer. Yeah, I was gonna say that was God. That was my prayer. That was my prayer. You just answered it and so..

Deonna:

Well, it lets you see into the future like, my son could have a job someday, my son can do this.

Like, because I mean, that's the same thing I've been through. We met a girl who was paralyzed when we went to the Nutcracker and I see this woman with a job and all these things, and it was such a huge deal to me because. You know, you don't know if your kid's gonna be able to do anything, you know, so I know what you mean. That's cool. Wow. 

Amber:

And so anytime I get discouraged or I'm thinking, you know what, what's, what's going on now? I think back to those moments I think, you know, God has already showed up so many times for me. He's not gonna leave me now. He's been with us the entire time. Mm-hmm. And He is truly faithful and good in every single thing. Yeah. And it just gives me hope and I think back to the way He's answered prayers and He still answers prayers. 

Rhandyl:

Yes. It's, I am so happy that you're sharing your faith like you are. Yeah. We can, I know Deonna and I both can relate, there’s so many moments in our experiences where it's kind of that aha, oh, that wasn't just a coincidence, that was, that was definitely God. So..

Deonna:

Yeah, and I think you're a good example of what to do. I was a good example of what not to do. I was angry. I threw a pity party for a very long time. But I mean, you know, God can handle your anger too. And I learned that. 

Amber:

Yeah. Yeah. He, I mean, I was, you know, angry, disappointed, grief. Yeah. And I think that's something that  parents with kids with disabilities need to know. It is okay to grieve. Yeah. Like, take it, it's gonna be sad for a while. 

Rhandyl:

And that's part of it. You have to do that. I mean, you can't just fake it till you make it. I mean, that's ignoring the, like what's staring you in the face, you know, you have to grieve it and accept it before you can, not move on, but like live your life.. Yeah. the way that it is and find happiness and peace. Yeah. 

Amber:

And I think grief changes, you know? 

Rhandyl:

Oh, it changes and you grieve, you grieve something new. Yeah. It's something every, yeah, whatever.

Deonna:

We have little like micro sadness every day. Like me and my husband will think of one little thing that we had never thought of before. But God helps you get to a place where you can handle those. Whereas at the beginning it was harder, so Oh, yeah. Yeah. We get tougher. Oh yeah. Because of Him. Yes. 

Rhandyl:

So what have been the hardest parts about caring for Henry as far as it pertains to his diagnosis? 

Amber:

So I think in the beginning it's figuring out how do I advocate for this child? Mm-hmm. And I think in the beginning, . You know, you're a new mom like you were with Remi. Yeah. And you're a new mom and you're just trying to figure out how to be a mom.And then you have to figure out how..

Rhandyl:

…how to talk to all these specialists that are asking you these questions. 

Amber:

And you have, you have no idea what the best, you just don't have the answer. Yeah. Yeah. And so I think we hear a lot like, and I think God gives mom and women these wonderful instincts as mothers.Yeah. Yeah. And of course we trust mom's gut. Yeah. Mom gut. Yeah. And I think that's truly biological. Oh, hundred percent. I think it's God given. I think He gave us that. Yeah. So cultivating your mom instincts or that mama bear part I think was the hardest part at the beginning. Mm-hmm, mm-hmm. Like knowing what questions to ask, like figuring all of that out was the hardest part.

Now I think it changes, you know, with each surgery there's this risk benefit analysis that you do. Like what is the risk of surgery? What benefit are we gonna get? Yeah. At like what is the outcome going to be? Like with this latest one, we were doing this muscle transfer surgery to hopefully facilitate better elbow movement. Yeah. And afterward you don't see the results, you know? Mm-hmm. It's not immediate. You don't see things, you think we need charger. You're thinking, oh, this is gonna be it. This is gonna be mm-hmm. Game changer. This is game changer. And we don't always see that when it's when you're in the moment. Yeah. And it's not right when you want it to happen.

Yeah. And so it's not till months later you're like, okay, this was a success. Even though he doesn't have full range of motion for his elbow. You know, he's got 70* and that's, it's better. That's better than when started before. Yeah. And I think too, for now, like this risk benefit analysis is hard, but also it's hard knowing when you're in these therapies like y'all have, how hard to push your kid? Like Yeah. When to push, when to lay off. Yeah, when to push and, 

Rhandyl:

Oh, that took a long time for me. Yeah. Because I was a therapist first and I am already person that's like, you know, walk it off, you'll be fine. Push. And so I think in the beginning I definitely pushed a lot harder than… I kind of had to take my therapist hat off and put my mom hat on, and that took me a few years to process that. Because yeah, it is figuring that out. Yeah. 

Amber:

So that, that's the hard part for me, like after each surgery. Okay, how hard do I push him? Because after surgery I can remember after his pollicization and I was like pushing, pushing. We're doing e-stim, you know, he's screaming his head off, you know, during this..

Deonna:

I was wondering if some of this was painful for him. 

Amber:

Oh, it's just, I mean, he was 18 months old when we had the first surgery. Yeah. And then he wasn't yet two when we finished the fourth one. Mm. So that's crazy. So we're, we're figuring all this out and the therapies are very, very, you know, they're hour long sessions.Yep. And I mean, he's crying and then by the end of it, I wanna cry because I feel like I've pushed too hard. Like am I doing the right thing? I'm questioning myself the entire time. 

And then we, when we get home, I'm like, okay, you know, we're gonna push, push, push. Mm-hmm. So now I've kind of learned, like you've said, it took me some time mm-hmm. To figure out, just let it be Amber. Mm-hmm. Let it be. Yeah. Like I'll do some at home, but I'm not gonna put this pressure on myself mm-hmm…to see these results. Oh, 

Deonna and Rhandyl:

yeah. Yeah. Because it, yeah, you can't, and he's so young, he doesn't understand why you're doing all this. Like, he doesn't know what you're pushing him towards. Yeah. 

Rhandyl:

You talk about therapy there, so like what does rehab look like? I'm just curious. I think probably for myself, but I think other people, that are gonna listen to this are also gonna be curious. So like, he has these surgeries, so then what does, what does post-surgery look like for you guys typically? 

Amber:

So post-surgery, he's splinted for a few weeks, depending on the surgery. He's splinted for a while and then begins the part when they take the dressings off and then it's 

Rhandyl:

Now y'all, do y'all stay there during the splinting time? Do y'all come home or both? 

Amber:

It depends. So last time, like the past few times we’ve gone home and then come back. Mm-hmm. This time they've changed their muscle protocol surgery a little bit, so he'll be in his splint a little bit of a shorter time. Okay. So we'll start therapy immediately. Oh, okay. Wow. Interesting.

I would say another hard aspect or challenging can be of parenting a kid with a disability is the comparison, which I know y’all… Oh yeah. ..have talked about that before. And it can be hard when you see kids, you know, I can remember walking in a grocery store or a store and watching a kid reach for something. Mm-hmm. And I thought, am I, is my kid ever gonna be able to use his hands? 

Deonna and Rhandyl:

Why do we all have traumatic grocery store stories? We do. We've all, we should not go into grocery stores anymore. Our delivery only. Yeah, no more going in. 

Amber:

I would cry in the grocery store and this is when I was pregnant, so you Oh, all the pregnancy hormones. Mm-hmm. Yeah. And you're thinking, how's my kid gonna reach for things? Yeah. And so just comparing, which I think comparison is the thief of joy. It is. Oh, a hundred percent. And then we choose to do it all the time. Yes. 

Yep. So anytime I see like, which I still do it, but I try, if I. See myself comparing myself to others are kids of a different, you know, doing milestones differently.I just think, okay, we are on a different path. We're on a different path, planet and comparison. Comparison is the thief of joy and I have to like make my mind move to something else. Yeah. Yeah. And so I try to make it move into like a mode of gratitude or something like that to not play the comparison game. Yeah. Mm-hmm. 

Deonna:

So what were some, if any, positive, unexpected, or, you know, surprising moments throughout your experience with him?

Amber:

A positive. I think about my faith and I know y'all are both people of faith. Yes. Yeah. And I think there comes a point in every believer's journey with their faith and following Christ. You say, do I really believe? Do I really believe Yeah. The words that are written here Yeah. Is, mm-hmm. Are these promises true? Yeah. Yeah. We always, 

Rhandyl:

I mean, I feel like everybody, any human's gonna question it. Yeah. Especially in situations like this, when it gets that hard..

Amber:

And it's hard and I was like, okay, do I really believe this? And I think it comes down to, yes. I do. And so one of the absolute positives that can come is just the faith in your, how your relationship with God changes and how you learned to just like the Israelites when they were wandering through the desert. Mm-hmm. And. You know, they had to rely on God. Yeah. You know, each day for the manna and the quail, everything. Yeah. And so you, they only got strength for one day or they only got their food for one day? Yeah. They only got food for one day. In the same way. We only get strength for one day. Yeah. And as parent, you know, as parenting kids with disabilities, it's the same, it's the same thing. I, I would start to worry about..

Rhandyl:

Just live day by day. Yeah. Just like you can't think about the, I mean, you can't on a daily basis, think about the future, like living in the present. Definitely way too much. No. 

Amber:

I would start worrying about way into the future, what it was gonna be like. Mm-hmm. And I thought, no, He only gives me strength for today's problems and I made it through today. I made it through. There you go. This surgery made it through this one. So I think that's theory to live by for sure. Like just live for strength for, for one day. And that's some of the positives that I can think of. 

And two is just like resiliency, like learning to be resilient and flexible and you know, not having expectations are the same expectations of what life is gonna look like. Yeah. Because, yeah, just because. Just because something is different doesn't make it bad. Yeah, yeah. Yeah. And that doesn't mean you're any less than. Yeah. And it doesn't make, it doesn't make them less than, it just makes it different. Yeah. And that's something I wish people knew that just because my child looks differently, just because they, you know, do things differently doesn't mean they're less than. Yeah. Yeah. 

Rhandyl:

Okay. So obviously your faith Has been your guide through this experience, but is there someone or something that you feel like has been a really big help during this, this whole process of raising disabled? 

Amber:

Oh, of course. I think my family has been amazing. I couldn't do what I do without my mom, without my amazing mother-in-law who, when Henry was born, she would come and stay with me. Yeah. And take care of him at night so I could just pump and then go back to bed. And that who helped with their care and take them to therapy appointments. And my dad, of course, who is always there for me. Yeah. You know, always a phone call away and he’s supported me through everything. So I think family is a huge thing.

And then of course that community. Yeah, you, you're my church family. That's huge. Yeah. Because if I hadn't studied, you know, all of these things and hadn't dived into my faith so deep before, I don't know if I would’ve responded the same way as I would now if I didn't have that, that background of digging deep into your faith and doing all of that, I don't know how, what it would look like now.

Deonna:

God knew you needed that before. Yeah. He was already needed and was getting ready for it. 

Amber:

He was, He was preparing me for that and he knew I needed that. Yeah. Another thing I think is just the community, you know, online, online can obviously be a horrible place, but I think but in our community it's a lot of, yeah, there's so many help relate to each other. You can, you know, bounce, you can see kiddos that, you know, have succeeded, with diagnosis similar to my son. Yeah. Or they just come alongside you and encourage you, you know, say, Hey, do this at your doctor's appointment. Do something like this. Yeah. You know, that's advice. Yeah. What questions to ask. Yeah. Where to go. 

And then I would say, y'all like things like this podcast. You don't realize it or maybe you do, but you're encouraging so many parents with this and you know, it's impacted and I think it's gonna change lives in that manner, if that makes sense. Right. Thank you for that. Yeah. And it's just a community because you realize I'm not alone. Yeah, yeah. Because in those hours, like at two or three o'clock in the morning, especially, you know, in the beginning mm-hmm. It's very. 

Rhandyl, Deonna, and Amber:

The shower cries. It's lonely. Yeah, that's what I remember. Yeah. The shower that that 

was the worst, yes. My car parking garage cries. Screaming into my pillow, you know? Yeah, yeah. Crying, cried everywhere. Crying into my Panera Bread salad. Yeah. In the shower. 

Amber:

You know, and it's those times that you know, you really do need community Yeah. For people to come alongside you and say, you are not alone. You know, you don't have to do this by yourself. Yeah. And you, your podcast when I'm like, when y'all drop, I'm like, oh my gosh, what are they gonna say today? I'm so excited. That's hilarious. So you don't realize that, but you're doing a service and you're serving others. Yeah. And. It's just beautiful.

Deonna and Rhandyl:

That's what we're hoping to do. So, yeah. Thank you. Yeah, that is, that means a lot.

Deonna:

Okay. So what would you tell a parent that just found out their child is gonna be disabled while they're pregnant? Because me and Rhandyl didn't go through that, so we don't know how that feels. 

Amber:

So I think when you find out a diagnosis like this, you're just in shock. So I think it's important to just take time, just to grieve, maybe that means not sharing it with everyone, maybe just telling your parents, or maybe it means not telling them for, you know, a few days, but just take the time for yourself to grieve it because processing like that takes time and you need to give yourself grace to process it. Yeah. 

And just wrap your head around it. And so I think, whenever you decide to tell everyone, that's your choice and you've had your chance, you've had the opportunity to wrap your head around it and then to grieve it. 

And another thing I would say, especially to parents, get a game plan with your spouse and  with your medical team and whatever that is. And people can mean well and say things, especially family members or friends. Right? Yeah. But don't, don't let those people influence you. Mm-hmm.  On what you and  your spouse have decided. Yeah. And what is best for your child. 

Rhandyl:

Yeah, and I think like you said earlier, following your mom gut, I feel like for me a lot of, in the beginning stages, I dismissed my mom gut. Yeah. Or, and then something happened that. I regretted I should have said this or that. And then, so I learned, how to advocate more from that experience. So, yeah, I definitely see what you mean by coming up with a game plan and, and making up your mind that you're gonna stick to that and you're not gonna let outside People interfere with your decision making. I mean, it's, it's gonna happen, but Yeah. Yeah. sticking to your guns is always a good game plan to..

Amber:

And that's something I wish I would've told myself back then, because there have been times like, I can remember you telling me that in the NICU, like, trust your mom gut. Mm-hmm. And there are times when I wish I would've advocated and I would’ve spoken up more. Mm-hmm. And I didn't. And it was to the detriment that I didn't say, rerun the x-ray, re you know, rerun, do something different. But I was thinking, no, they're a medical professional or whoever it is, they know best.

Right. If that's not true, and this is something I wanna tell parents, you know your child better than anyone else. Yeah, a hundred percent. You are the expert on your child and don't let anyone else tell you differently because you know your child better than anyone else. Amen. Better than the doctors, better than anything else. So just trust those natural mom instincts. Mm-hmm. That God gave you. Yep. Yep. 

Rhandyl:

So if you describe What Henry's taught you so about yourself, like through this experience? Like what is something that, I mean, I'm sure there's a list, I'm sure there's a list, a million things, but Henry himself, like what has he taught you as a mom?

Amber:

Oh my gosh. That why, if you know, we have expectations and it's not always what you expect. No. And that's hard. That's hard. But it doesn't mean it can't be beautiful. Yeah, yea. And it doesn't mean that it's not gonna have joy and it does. And there, like finding joy in those moments. And just because you know our life  doesn't look like other peoples, doesn't mean it's any less joyful. So he's taught me to find joy in the small things. Yeah. Like the very small things like, you know, we don't meet milestones maybe like other kids do. So, you know. 

Rhandyl: 

Yeah, I totally get that. You have to find, you definitely have to find the joy in the little. A little inch, Inch tones. 

Amber:

Yeah. Like finding joy in small things. And then I think just learning patience that you can't let your circumstances use you. Yeah. Like I think, yeah, I like that. Like I think the enemy wants to use our circumstances to bring down, bring us down. Yeah. Yeah. But I think we have to use our patience and I think with our patients we can view things differently.

Rhandyl:

So kind of asking similarly, but Amber, what is the best thing that has come from raising disabled? 

Amber:

You know, I have a beautiful relationship with my son, and so I think just the relationship, the parent/child you have with your children is beautiful. And from that you just see the goodness of God. And so that's something that I've seen from this. And then there's a verse, Romans 8 28 that says, and we know in all things God works for the good of those who love them, who love him, who have been called according to his purpose. That's beautiful.

Mm-hmm. And so, you know, while, you know, obviously if we could heal our children and change things, of course, oh yeah, we could do that. Play God, yeah, if we could do that. But just because this, this thing has happened that I didn't want to happen, that has happened, does not mean that God's not gonna use it for good because He is and He is gonna use it for good.

And there are so many good things that have come from it, from like, The community from the people that you meet from, you know, the testimony. Yeah. And the way that we have seen God work in Henry's life, in the lives of others. Oh yeah. And the people and the relationships that you have. So just seeing the goodness of God and His faithfulness is the biggest thing I think that's come out of this.

Rhandyl:

Awesome. I love that. Thank you so much, Amber, for joining us and sharing your story, and your personal experiences, your faith, just all of it. 

Deonna:

And we can tell just by talking to you today. I just met you today, but I can tell that you are influencing everybody you meet to know who God is, just by being with you. And I can tell that this is a journey that you're going to use for good and so we're, so, I'm so happy I got to meet you today. Rhandyl’s known you forever, but we're just so thankful that you shared your very, very vulnerable story of your life with everybody that's listening. So thank you so much. 

Amber:

Well, thank y'all for having me and I appreciate all that y'all do for this community.