Ep. 78: Wendy’s Story

 

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Summary

When Ammon was born, Wendy immediately knew something was different about him. He was baby no. 6, and her internal alarms were sounding. As he grew, more and more medical issues arose.

In this episode, she shares the trauma she experienced when no one took her concerns seriously. She also tells us of the incredible story of finding his rare genetic syndrome diagnosis when he was five years old, and how that affected her grief.

Ammon is now 15 years-old and brings her and her family so much joy.

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Episode Transcript

Wendy Hair  0:00 

I couldn't get through to him. At the time, I just remember feeling like this glass wall between us, me reaching out to him and him reaching out to me. That was when I learned, I can still speak spirit to spirit.

 

Madeline Cheney  0:20 

Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney. Today we have Wendy's story. Wendy is mom to nine children, one of which is Ammon, a 15-year-old boy with a rare syndrome and autism. Ammon didn't receive either of these diagnoses until he was five, and then nine, and that really affected Wendy's journey. In this episode, she shares how traumatic it was to worry about her son and to have those concerns minimized and not taken seriously by those around her. She then tells us the incredible story of his eventual diagnosis of an extremely rare syndrome, and how her grief was affected by that. There are so many moments during this conversation that I know will resonate, and I'm really excited to share them with you. So, for how I was connected with Wendy, it's kind of a cool story. Another of her nine children is Brian, my little sister's husband. Wendy is my sister's mother in law and Ammon is her brother-in-law. I'm not sure what that makes me and Wendy relational-wise but I can tell you that when I found out that Sarah was dating this great guy with a younger brother, with a rare syndrome, and also how close they were, I was so excited. I'm sure you guys, of all people, understand why I was excited. My sister Sarah told Wendy about the podcast, and she's been a loyal listener ever since. Anyway, I think it's a pretty cool connection to have and, you know, I've met Ammon and I've been to their home several times, and watching him interact with his mom is the sweetest thing. So, Wendy lives in Utah with her husband, Andrew, and their nine children. Natalie, who's 24; Brian, my-brother-in-law, is 23; Zach, who's 21; Landon who's 19; Sam, who is 17; Ammon, who is 15; Ellie, who is 12; and their nine-year-old twins, Simon and Luke. Wendy is a lover of vintage books and hiking in the mountains behind their home. Let's jump in. Hi Wendy, welcome to the show.

 

Wendy Hair  2:53 

Thank you so much.

 

Madeline Cheney  2:55 

Yes, I'm really excited to chat with you tonight, all about your life with Ammon and your diagnosis saga, or your journey in having diagnoses for him. First I would love for you to start out by sharing who Ammon is and what makes Ammon, Ammon.

 

Wendy Hair  3:19 

So Ammon is 15 years old and he is almost 6'4. He is this huge, lovely person. He is a huge fan of Rice Krispies cereal. He thinks that it's really awesome to go in our cupboards and just get out of mixing bowl and fill his whole bowl with Rice Krispies. So we have to manage that all the time. He is just so delightful. He is non-speaking, he uses an iPad to communicate his basic needs and wants. He tells us a lot on his iPad, over and over, "When is it time to go home?" if we're somewhere, or he'll say, "I want pizza, I want pizza," you know, he'll distribute that. Developmentally, it just depends because he's probably more like an 18-month-old in a lot of ways, but he has these amazing things where he can, like, he can read. He's probably on about a seventh grade reading level. So, I mean, he can read and, even though he's non-speaking, he can sing, which is really an unusual thing. I don't think I've ever seen a child who wasn't able to talk, sing.

 

Madeline Cheney  4:48 

Right, like lyrics and everything, right?

 

Wendy Hair  4:51 

Yeah, lyrics and everything. So, I mean, you kind of have to be his family to know what he's singing, but you can hear the tune and, if you're listening in, you can hear the song. I feel like that's quite remarkable. I have a favorite song that makes me think of Ammon, it's called Extraordinary Magic by Ben Rector. When I think of Ammon, this magic trails behind him. He is such a unique person, I've had so many people tell me how unique he is, how guileless, and just the perfect pure love that he has.

 

Madeline Cheney  5:31 

I love Ammon. Well, that was a good little overview. Let's hop into his pregnancy, and then following through to his birth. We'll start day one and when you first noticed anything different or unique about Ammon or your pregnancy with him.

 

Wendy Hair  5:55 

My pregnancy was normal, the delivery was normal. He was full term. I just remember, when I held him for the first time, I had this feeling inside of me that something wasn't right. Looking back, I think, how could I have known that, just holding him for the first time, but something in my mom heart told me that there was just something not right. Right around three to five weeks, he wasn't smiling. I couldn't even engage him, he just slept. He's my sixth baby, so I kind of knew infants more at that time and felt more confident in my knowledge in the development stages of an infant, I just noticed that he was sleeping so much as an infant, which most moms would just be so happy about but, for whatever reason, I just kept having these little alarms go off in my heart and just thinking that it seemed unusual. Then, right around four to five months where babies are engaging more, he would smile and he was such a happy, sweet baby. But then I started noticing that he wasn't having any strength in his lower limb. A six-month-old can bounce and jump on your lap but his legs would just buckle under him. At my regular appointments with my doctor, I said, "I just noticed that he's not able to have any kind of strength in his legs and his head was just getting so big, so fast." We did a CAT scan, and that was normal. My doctor just said, "he's such a chubby baby, he'll catch up." I just kept getting patted on the back. By his nine-month appointment, my doctor was finally listening to me. I'm just like, there's something not right. I could sit him in a room full of marbles and he wouldn't put anything in his mouth. He never explored the world through his mouth, like so many babies do. So he referred me to Early Intervention and we started doing physical therapy for his legs. We started noticing that he didn't have the pincer grasp. He wasn't putting anything in his mouth and he would gag and throw up anything that I tried to feed him. He just wasn't even swallowing very well, except for liquids. I wanted the world to stop and just pay attention to all of these alarms going off in my mind. But I wasn't receiving, in my mind, the response to the gravity that I was feeling. It was more like, "Oh, he'll just need some therapy and he'll catch up." Now, just turning around and looking over that span of his development and just how hard every single thing he's ever done has been. It's kind of astounding, just reflecting on it. When I was preparing for this today, I was just thinking, I still have feelings that come up that are kind of traumatic, really traumatic, actually, for just the lack of response to that.

 

Madeline Cheney  9:38 

I think, and this is my experience and listening to other parents but, in our realm especially, pediatricians often see themselves saying these reassuring things like, "Oh, it's okay, you're freaking out over nothing. It'll all work out." But that is the opposite reaction we want. We don't want to be reassured, we want to be validated and for it to be taken seriously so that our children can get the care they need. So I think like, in that moment, you needed help, and you needed more reaction and more testing or whatever. But to just kind of be patted on the back, I'm sure that was really minimizing and incredibly frustrating when you're like, screaming into the void, and no one seems to be listening to you.

 

Wendy Hair  10:19 

Exactly. I even had some dreams where I'm yelling, "Something is wrong with my baby!!" And just waking up with that feeling of dread. I still remember those dreams.  I remember, Maddie, you mentioned in one of your episodes how guarded you were with your stories. I even turned the episode off for a second because I was thinking, "Wow, I am too. I am extremely guarded with my stories with Ammon. I don't share very much about him." I think it's because there wasn't a response and because it was minimized that I still carry that. These stories and his life has so profoundly impacted my life and I am so grateful for him, and just what I've seen and experienced through him. I just think, it's almost like I don't want to share those things because of those initial months when I was trying to reach out.

 

Madeline Cheney  11:28 

Yeah. I mean, and thinking more about this, so with 9/11, apparently there were two groups of people. People who were able to flee and run from the scene, and then there was a group who was trapped. The people who were trapped experienced huge symptoms of PTSD and the people who were able to flee did not. Their trauma was much more simple and able to be worked out a lot faster. So I think of that with this kind of situation where it's you were not getting the response, you were not able to do what you wanted to do, and being minimized like that probably had, in a way,a traumatising effect of being trapped and not being able to flee or not being able to act the way you should have been able to. So, yeah, that reminds me of that concept.

 

Wendy Hair  12:24 

And it wasn't just with professionals. It's one thing to reach out to a professional but it's another thing to, as much and dearly as I love my family, hear that from the. Even my husband, to be honest, he wasn't seeing what I was seeing. I think people experience this and I think we do need to hear, and this has been one of the healing aspects of your podcast for me, is to hear other parents' experiences and to know that I'm not alone. That has aided in my own healing of that. So, when your family doesn't respond, and in their best intentions try to make it better and make you feel better. Telling you, int the moment, "don't worry," or "he'll catch up," it doesn't really serve you.

 

Madeline Cheney  13:19 

Yeah, totally. Because, even with Kimball, I had a diagnosis, which aided in the validity of my concerns. Like, "He has this genetic syndrome, that's why I'm so upset." That can add, almost, like, credibility to your worries and stuff. So, I imagine that if you don't have that diagnosis yet but you know something is up and no one is listening to you, it'd be really hard to emphasize enough to them, like, "No, something's wrong and I'm worried about him." If you don't have that diagnosis to then, even when you do have a diagnosis, I think there is still this feeling of needing to like prove to them, you know, how hard it is or how hard your life is, and they just can't understand. But I think not having that diagnosis yet probably added to that.

 

Wendy Hair  14:08 

Yeah, I agree. And I hope that we're getting better at diagnosing kids when they're younger, and pediatricians and developmental pediatricians can hear these stories and learn from from things like this.

 

Madeline Cheney  14:29 

Yeah, totally. So, how long was it before you received his genetic diagnosis? What happened between this time and when you received his diagnosis?

 

Wendy Hair  14:40 

So, when he was three, he started walking and because it had taken him so long to learn to walk, his feet were just so tiny. When he did walk, both of his inner ankle bones would touch the ground. So, I had a really good friend who said I could take him to Shriners Hospital. And this was another sore point because I just didn't feel like my pediatrician and the other pediatricians that I was talking to were helping me navigate and find resources. I felt like that was part of the angst, not only dealing with all of the emotional side of it, but then trying to learn how to navigate, how to find answers and carving out that path, it's just something moms shouldn't have to do when they're just trying to have a child. So we did go to Shriners. Then, when I stopped nursing him at 12 months, he just went right into chronic constipation. Later I found out that this is part of his syndrome, but his bowels just did not operate. No matter how many times I went in and said his bowels were not working, like, he cannot have a bowel movement, and they said, "Oh, just give him prune juice or apple juice." And then I was referred to the colorectal clinic at Primary Children's.

 

Madeline Cheney  16:17 

That sounds like it's kind of snowballing these different symptoms of like, this is getting more intense and, at this point, you're still not being taken seriously as far as there being an overall diagnosis, right?

 

Wendy Hair  16:31 

Right. At that time too, I just remember waking up every day and thinking, his childhood is slipping away from me. He wasn't learning any words whatsoever but that wasn't even the hardest part. The hardest part was, he couldn't understand me. And so his receptive language is very, very, very compromised. And it wasn't just that he couldn't talk to me but I couldn't get through to him. And so at the time, I just remember feeling like this glass wall between us, me reaching out to him and him reaching out to me. That was when I learned, I can still speak spirit to spirit wit him, which became a very, very real part of our communication and still has to this day. But, coming to grips, you think about how much you enjoy when your little ones bring you a truck and show you the truck, or looking outside at the garbage truck, and seeing how excited they get or, you know, anything they want to show you, and how you start seeing the world through their eyes and how magical that can be as you raise your children. I think, looking back, that was the hardest part of everything. It was one thing for him not to be discovering the world around him but it was another thing to have this barrier that I felt so intensely as his mum, that he was really seeming very infant-like, and just wanting so badly to know what he was feeling and thinking. And every day waking up to that and going to bed thinking how another day went by and his childhood keeps moving on. I felt like I was missing it. And this was like two years old, then three, and four, and then at five years old, he started having seizures. He was sitting at the counter and his eyes rolled back in his head and he went really pale. I knew that was not normal and right so I started seeing a neurologist, and they said he had a little nest of irregular pathways on the right side of his brain. He said sometimes that can be a brain tumor. So we went and had an MRI for him and, fortunately, it wasn't a brain tumor but, you know, you go on these rollercoaster rides of things just not getting better, and you just think, "Is this gonna keep getting worse?!"

 

Madeline Cheney  19:33 

What was that like, when you were waiting for that appointment to go have the MRI and going into that, wondering if he had a brain tumor? What was that like for you?

 

Wendy Hair  19:43 

I think at this point, I was in a place of not believing things were gonna get better. I mean, I think I had heard so many false hopes from professionals and from my family. I kind of dug down inside myself and was in this place where I was bracing for almost anything at that point. I just remember feeling  kind of numb, actually, very, very numb, as far as, like, should I prepare myself for this other thing, and I already went from zero to 100. In my mind, it was like I was already told he had a brain tumor. Does that make sense? I was so used to things happening that I just couldn't wrap my mind around.

 

Madeline Cheney  20:59 

Yeah. It's like your the worst case scenarios kept happening. So, like, why not this too, and might as well accept it because it'll be more painful to think it might not be that and then to later find it out, so, might as well just assume that that's going to be what's happening. And that was your situation for most of it, was suspecting something and it actually being what it was. Why would it be different?

 

Wendy Hair  21:25 

Yeah, that is a really good way to describe it because I was still so wrapped up in it, and those first five years were really difficult with grief. Yeah, what you said was absolutely true. When he was in kindergarten, we had seen a neurologist up at Shriners Hospital, who I absolutely love, she was one of my top five favorite doctors, I absolutely adore her. She said, "I really think Ammon has a genetic syndrome." All along we were just told he had pervasive developmental disorder, he's not otherwise specified, we just kept getting those answers from other professionals, and my pediatrician especially. She said, "I really think Ammon has a lot of the features of genetic syndrome." So she referred us to genetic counseling at Primary Children's Hospital in Utah, and we went, and that day was, it was just so interesting because we went in, and you never know what to expect at these things. They sat him there on the bed and they just combed over his entire body. They were looking at how his hair was parted, how his fingers were pointed, the lines in his hands, his mouth, where his eyes were, his spine, his toes. I just sat there and thought, wow, this little boy is just getting completely dissected. We just had no idea what to expect. And I think they narrowed it down to like, five different syndromes. But there was one that they didn't test for at the time and it was called opitz-kaveggia syndrome. I looked it up and I immediately thought when I read about it, this is what Ammon has, this is it, this has got to be it. And, I mean, inside my mom gut, it was just like, this is it. And I know for so many families, you know, when you're trying to find a syndrome, it's like finding a star in the sky. I mean, so many families go undiagnosed, but I just felt like that was it. So when I looked up, and I was reading about opitz-kaveggia syndrome. Then I looked up Dr. Opitz, one of the doctors who was the researcher and the geneticists, and I was looking him up and it said he practices in Salt Lake City, Utah. And I was like, oh, my goodness, because he was born in Germany and he practices in Salt Lake City, Utah. So I got on the phone and I found his number for his practice up at Primary Children's. I called the office and the receptionist answered and I said, "I believe that my son has the opitz-kaveggia syndrome. I don't have a referral but I would love to make an appointment." I thought she was gonna say, and it's interesting because it was exactly 10 years ago, this week. Yeah, it was 10 years ago, this week that I made that phone call and I thought she was gonna say, "Yeah, we can see you in July." So I was bracing myself and, in fact, Maddie, I remember where I was when I made this phone call. I remember exactly where I was driving. I still have that memory where I was driving when I made this phone call. And she said, "Can you come in next Wednesday, he has an opening next Wednesday."And I said, "We will be there." And this is the day before Thanksgiving. So I took Ammon early that morning to Salt Lake, which is about a 30 minute drive from us, and the whole time I remember thinking, Okay, if it's not it, I'm gonna be okay. It's gonna be okay. If he says this is not the syndrome. I was just preparing myself the entire drive up. And so I drove up and parked in the parking lot and got him out. When I was walking up to the front door of his office, the door opened and there was a woman standing there. And she said, "I'm Mrs Opitz and I love meeting the families my husband has spent his life researching and working for." That really just caught me off guard, just seeing his wife right here. And so she walked me in and we checked in, and then she walked me back to his office where we met Dr. Opitz. He was this tall, just wonderfully kind, older gentleman with a German accent. He sat me down and he said, "I know that moms usually diagnose their kids before I do, but I want you to know that this is what your son has." And it was just like, I don't, I had a hard time listening to the rest of the two-hour appointment, he spent so much time with me, he sat there, and he sat Ammon down and he just looked over Ammon kind of like the genetic counselors did. He said he could be the poster child for this syndrome. And the syndrome is like, kind of like a larger head, and just the way his jaw was, and his eyes, his lower-set ears, the constipation, the seizures. It was just so healing and so validating. It all came together in this one moment. And here I am sitting in front of the doctor who has spent years and years and years doing the research, and we benefited from that. He was so kind and he said, "I want you to know that these kids have so many gifts, and just focus on his gifts." That was what he told me.

 

Madeline Cheney  28:50 

That's incredible. I can see why that would be so healing when this whole time you were screaming into the void, "Something's happening!" And no one's taking it seriously, and we don't even have a roadmap of any kind. We have no idea what to expect what will happen next, and then to all of a sudden and be like engulfed in that wise all-knowing man who has been studying your roadmap, like, he knows what to tell you to do. And that ultimate validation to be like, you discovered this, you knew this is what he had. To have that confirmed must have been so euphoric.

 

Wendy Hair  29:26 

It was incredible. I can hardly even think about it without weeping. I can't tell you how many appointments we had sat through before that time. Just trying to figure out what was wrong and so, yeah, it was just amazing. It was like, just this wash. It was just this wash, like the grief washing away. And we still faced so many mountains to climb, so many mountains, but I felt like we had some footing. We had our footing to the point where we could climb those mountains. It wasn't just wandering about.

 

Madeline Cheney  29:40 

That makes so much sense. So was his autism diagnosis a similar experience? What was that like? I know that zooms way ahead to when he was nine.

 

Wendy Hair  30:33 

So, when he was five, he was still drooling quite a bit. Then he started having autistic-like tendencies where he would, we call it humming, where he makes kind of a low noise. It's kind of like a regulating thing he does. A lot of it was the sensory. We were doing so much therapy at that point. From the time he was little we were just in therapy appointments every single week. It was interesting because that was another mom, intuition, like, he has all these autistic-like tendencies, which we embrace. And, you know, it wasn't that we were shying away from that at all. And I actually knew we fit in the autism world. I knew we belong there. But I didn't have a diagnosis. And we've been going to speech clinic for about a year, about twice a week. So we had been there for a long time, at the speech clinic. A Professor actually reached out to me and said, "Would you like me to evaluate Ammon?" He was nine years old at that time. And, yeah, I welcomed that. We went through those evaluations and it was really interesting because I just remember the first IEP that I have on MLS three in preschool, and I walked away devastated by that IEP, and just the statistics of everything, like "Oh, Ammons this percentage in this, and this in that, etc." And it was all just so, so, so low. And to me, I knew those things, but to just sit around a table and hear those things, was just devastating for me. But by the time he was nine, I had sat through so many IEPs and I'd come to a better place where I knew and felt who Ammon was. I knew we were going to be on our own journey. I knew he wasn't defined by his IEP report. So I just remember when she called me and said, "Let's meet." So I went in and she was very, very careful with the information she was giving back to me. I had to reassure her, you know, "I'm okay, you can give me this information. I'm okay with this information, like I've come to a good place." But he did get an official diagnosis, which was really great because we could move forward and that would just open up other things for Ammon. And it opened up, you know, the autism community for us, which has been a big part of our lives.

 

Madeline Cheney  33:31 

Yeah. And that seems like such a difference in, I guess, in contrast to the beginning, like you said, where it was more distressing, and like, "Oh, my gosh, what's happening, these are red flags," to kind of transform into like, "Oh, no, this is Ammon. I'm totally fine with this diagnosis." It probably was also, like, hard in some way. I don't want to minimize that either. To have come to that point where you are following his lead and embracing all of Ammon. I'm sure that was really cool to see that contrast, to be able to tell her like "No, I'm okay. Like, you can just tell me."

 

Wendy Hair  34:08 

Yeah, you know, it looks bleak on paper. But by the time he was nine, I had seen and felt so much of all of the gifts that he carries. And the things that we had already gone through and you know, at that point of our journey, it was a good place. And he was in a good place too at school. So it was just kind of like, yeah, it's nice to have that diagnosis for him.

 

Madeline Cheney  34:48 

Yeah, like that belonging and more community and more resources. There's just nothing but good coming from that. Well I would love to wrap up with circling back to something you were talking about in the very beginning, when you were saying that, in the early days, and you were like, "What is happening? What's going on?" And you said it was really difficult because there was that glass between you and Ammon and you felt like you couldn't really connect with each other. How has that evolved? What is that like today? What's your connection with Ammon?

 

Wendy Hair  35:21 

I enjoy him so much. You know, he still only has a few words that he speaks and his receptive language is very slowly building, but it is something to be celebrated every time. he learns something new. I mean, I feel like the things that I took for granted in my other kids, I just celebrate so much with Ammon. The other day I said, "Hand me your seat belt." And he handed me a seat belt. And I was so excited because I will still talk to him as if he can understand me, but there can be moments where, I think, "Wow, he just knew what I asked him." Then I get really excited and he gets really excited and laughs, and what is so sweet about him is that he has such a great sense of humor. And so I can be really silly with him and he gets the silliness, which I absolutely love. And using his iPad has really been, kind of like a Helen Keller breakthrough in a way because when he says, "I want a carwash," and then I read and I act on it, let's go to a carwash, you know, I mean, it's clicking for him that I can say something and be responded to. And so these are huge, huge strides. But about eight or nine months ago, I was going to pick him up from ABA therapy, and I actually hit someone's dog on the way to go get him. Someone's family dog, and I was so devastated. So when I picked him up, I had been crying. He got in the car, and I just couldn't hold in my tears. I just was crying and I buckled him in and we were driving down the road, and he reached out and touched my cheek and he said, "owie." I said, "Yeah, I'm sad. Ammon, I'm really sad." And he got his iPad and he was kind of scrolling through. And it said, "Love mom, love mom." And it was like, it was the first time that he'd ever told me that he loved me. He expresses it all the time. He loves hugs, hugs is one of his favorite words. Huggy. He says huggy all the time. For that to happen. And just thinking about the grief that I went through for so long. I couldn't feel like I could get to where that would ever happen, and how amazing that felt and restored hope of our future and teaching him to type and communicate. What that could look like down the road and how exciting that is and just shutting all of the timelines away ans just being in Ammon's time and, as we work for it, I feel like he will be able to communicate more, maybe more than I can even imagine. So I have a lot of hope. It's a good feeling.

 

Madeline Cheney  38:59 

That is the sweetest story. Oh my gosh. I love that. I love how that like illustrates so many parts of like, how far he's come and it's just his love for you and concern for you. That is so sweet.

 

Wendy Hair  39:14 

Yeah, well, I don't know if you may feel this too, like just this guarded hope. There's a guarded hope that I have felt since he was born and ever since he was tiny, tiny. I just I've realized I just guard hope, and it feels good to allow that feeling to be felt. There is hope for that communication.

 

Madeline Cheney  39:49 

Yeah. Oh, totally. I think I'm pretty sure every single person listening can relate to that guarded hope because I think, again, it kind of goes back to how a lot of times, it was kind of the worst case scenario that happened, or like, you know, we did get the hard news that other people are able to avoid or whatever. So it does feel kind of scary to hope for things because then you might be disappointed but those moments when you're like, "Wow, this actually happened." Those are so sweet.

 

Wendy Hair  40:17 

Yeah. Especially when it's so unexpected, you know?

 

Madeline Cheney  40:21 

Yeah. Oh, I love that. Well, thank you so much for sharing your story with Ammon and the things that you have gone through with him. I really appreciate it.

 

Wendy Hair  40:34 

Thank you. I love sharing about Ammon to people that I know will receive it.

 

Madeline Cheney  40:43 

Yes. To see adorable photos of Wendy and her family, head to the website, TheRareLifePodcast.com. You can also connect with her on Instagram. I'll put a link for her Instagram account and mine in the show notes. Also in the show notes is a link to the episode she mentioned where I talk about being protective over my stories with Kimball in fear that others won't take them seriously. That's episode 64. Join us next week for Wendy's special topic episode. It is one every one of us needs to hear. All about processing through guilt and shame when we feel like we've caused our child's disabilities and when we struggle to do all the things like appointments, etc. that are required of us. Don't miss it. See you then.

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68: Dipping My Toes into Educational Advocacy

 

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