Latest / AHA Podcast / Learning to Accept the Life You Never Expected | Debbie Jorde (Part 1) (ep 19)

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Learning to Accept the Life You Never Expected | Debbie Jorde (Part 1) (ep 19) · AHA Podcast

• Ali Andrus: because usually I'm taking care of her. Yeah. And now she was taking care of me in that moment. She was. Giving me information that she believed would help me not be so afraid. Mm-hmm. And I'd spent a lifetime trying to help Heather and Logan not be so afraid. welcome to the AHA podcast. I am your host, Ali Andrus and today I am joined by Debbie Jorde She is the author of Eight Fingers and Eight Toes and mother to Heather and Logan. They were both born with a rare genetic condition called Miller syndrome. Debbie has spent decades sharing her family's experiences with medical students, helping future doctors understand the people and families behind a diagnosis. She has also navigated her own diagnosis of multiple sclerosis, changes in her faith, and the heartbreak of losing her daughter Heather. What moved me as I learned about Debbie was her willingness to talk honestly about the hard parts, the fear, the uncertainty, and the moments. When acceptance felt impossible. There is also so much love in the way she speaks about her children and what they have taught her. Heather lived by the words choose love. Today we'll talk about what those words mean to Debbie, how grief has changed her, and where she finds connection, meaning, and joy now. So welcome Debbie. So glad to have you here. Thank you, Ali It's nice to be here. Yes. Okay. So we're gonna let her tell her story through some questions. the first one I'll start with. So you were raised to believe your life's purpose was to be a wife and mother. What did that picture look like before Heather arrived? Well, looking back, I see the number one thing that comes to mind is what a responsible child I was. The kind of child that takes way too much responsibility. Mm-hmm. I took responsibility for my mom who had mental illness. I felt responsible to keep her alive, to keep her happy, to keep peace in the home. And I was raised in a Mormon community. I was probably more active than most of my family because it gave me some structure. And structure seemed to help give me some guardrails for my life. So I was raised from that faith to believe that the highest calling for a woman is to be a wife and a mother. Yeah. And that just was downloaded into me. I had no other goal than that. So when my little brother was born when I was 13 years old. I was very excited to have a baby brother that I could be a second mom to. Which I was. And that included sometimes rocking him and singing very loudly and stuffing blankets under the door so that he could not hear our parents fighting. So I had a very protective way of being both for my siblings when I would do their chores so they wouldn't get in trouble for my mother so that she wouldn't get in trouble by her husband who would come home and find fault with just about everything. So then I was old enough by then to babysit for other people. So I babysat other children for three dollars and fifty cents an hour. And then my other my little sister was born. So these my brother Shaun and Shelly were born through my stepfather and mother. And I had a older sister, Kathy, and a brother just a year and a half younger, Cloyd. And so it was one big family, but a little bit separate in the in the age differences. Yeah. Teenagers and and young, young, young children. Yes. So When Shelly came along, I was sixteen by then. So I still had fun playing mom and coming home from school and seeing her and just had so much fun with her. Mm-hmm. Yeah. But I was also getting more interested in social life at school and boys. And in school I was a high achiever. Mm-hmm. I think a lot of that was part of the Taking control of what I can control because there was so much in my life that I couldn't control. Exactly. So even back then, before I recognized what an important act that was to let go of what I can't control and focus on what I can control. Mm-hmm. So I was doing that back then through getting good grades. I was attracted to physical activity. I was healthy. my sister did tumbling in fifth grade and told me about it, so I did tumbling. That turned into gymnastics in junior high school, but I was a very one activity person. So I chose the vault and I was good at it. So I competed in vaults. And then later it was track and field in the high jump. So even though I was required to do a variety of things, I pretty much focused on one thing that I could be good at. Right. And so that went along and I went with my boyfriend to a really cool barber shop. Had a pool table, had saloon doors to each booth, and I was gonna be hairstylist because I could do people's hair at home while I was raising my children. And if anything happened to my husband, I would have some kind of way to make income. So even the choice of my career aligned with being a wife and a mother. That's how sure I was. Of what I wanted to do. So I was working at a department store going to barber school, and that's where I met Terry, Heather and Logan's dad. So in nineteen seventy-six, Terry and I were married. And we were healthy, we were strong, we were young. There is no reason to think that anything would be wrong with our children. No reason at all. Yeah. So when I was pregnant early, only one time I thought, what if something's wrong with my baby? And I thought, come on, look at all the normal babies born every day. Nothing is going to be wrong with your baby. And I just forgot about it. I never thought about it again. So when the time came that I was being wheeled into the delivery room. The biggest question on my mind was, is it a boy or a girl? So as we were waiting for Heather's head to crown, and the doctor pulled her out of my body, and he placed her on my abdomen, and my eyes locked on her arms. They were bent. So bent. 90 degrees bent. Wow. Absolutely nothing could have prepared me for that. Yeah, yeah. Hmm. Thank you for taking us through that can you take us back to that moment in the delivery room and what that felt like for you? So I went right into denial. Nothing's wrong with her arms. Everything's gonna be okay. She was a month overdue, so she's just scrunched up from being inside me for so long, and they're gonna straighten out. Like wrinkled clothes or something. Right. So denial. And then I heard Terry say to the doctor, What's wrong with her arms? Mm-hmm. And because he asked that question, it broke through my denial just enough to realize something's wrong with her arms. Mm-hmm. So I said to the doctor, Is everything else okay besides her arms? And he said, I'm so sorry, Debbie. She only has four fingers and four toes. And that was really unreal. Because people would say to Terry, What do you want, a boy or a girl? And he'd say, I don't care. As long as it has ten fingers and ten toes. Yeah, yeah. So they wheeled me to recovery and they rushed Heather away because she was having trouble breathing. So when I was in recovery. All I could think of was This isn't happening. It's not real. I just want to go home and pretend like this didn't happen and I'll start all over and I'll have a new baby, a different baby, because I don't want this baby. Yeah. And then Terry came back in after calling our parents and I just blurted out, I don't want this baby. And he said, I don't either. What are we gonna do? And for those of you who are really disturbed by hearing me say that, because you know Heather and Logan have also heard me say that to thousands of medical students, we speak together, they understand knee-jerk reactions, they understand denial, they've experienced it themselves, and they've also experienced their entire life of. unconditional love and they know how important they are. So you don't have to worry about them. Hm. Yeah. Yeah. Thank you so much. I think a lot of people wouldn't understand what they would do in that situation and I could completely put myself in your shoes and see myself thinking the same thing. But many people aren't willing to say that. So thank you. That's right. Well, you know that's I would say that's one of the most important parts of of the story of when Heather and Logan were born because I know I'm not the only one that has thought that. Mm-hmm. There have probably been even parents that have a healthy child that have thought that. And you feel terrible. You feel like you're a bad person, horrible person. And then they don't tell anybody. And then it just eats at and it hurts their self esteem. And they have this terrible dark secret about themselves that they're just a terrible person. Mm-hmm. So that's why it's so important for me to say it's just a knee-jerk reaction. It's just denial. That's all it is. It's what you do after that that's important, not that immediate reaction. Absolutely. Thank you for sharing that. you've talked about Seeing Heather alone in the nursery and the nurse coming to you and something shifted in you when she brought Heather. tell us more about that. So I was wheeled to my room and the doctor came in and he told us Heather has a cleft palate. She has three bent fingers, permanently bent, and a thumb. So she has opposing force. She was aspirating on her formula, so she was getting fluid in her lungs. They didn't know what all was wrong with her that way. I said, Can she see? And they said, We don't know. We'll have to wait and see. Her eyes are swollen. Can she hear? Well, we don't know that either, because her ear canals are so tiny, because her ears were malformed. They were little cups and they had little teeny tiny ear canals. So, and then he left, my sister and mom left, everyone left, and I was alone. And I woke up in the middle of the night thinking it was a bad dream. And then I would realize it's not a dream. This is really happening. And so I just cried myself back to sleep. The next morning I stopped all my phone calls. I just couldn't bear to hear those three words. I'm so sorry. Because if I heard those words, that meant it was really happening. And I was still in denial. I wasn't ready to face the fact that this was really happening. So I cried and cried and cried all morning long. And then in the afternoon, I really think all the crying creates space for something else. Yeah. And the something else. was curiosity. I wanted to see what the baby looked like. I believe it also could have been mother instincts. Yeah. So I walked down to the nursery. I was standing outside the nursery looking in, and the only baby in that nursery was Heather. And I was looking at her, thinking, that poor baby, she's all alone. Because the other babies are with their mothers. But her mother doesn't want her. And I'm the mother. And I was just standing there with tears streaming down my face when a kind nurse put her arm around my waist and she said, Do you want to hold her? And I said, Okay. And I really think that. Having that nurse put her arm around my waist and ask me if I wanted to hold Heather opened up space for the next step. And the next step was going to hold her. Yeah. So the nurse opened up space for that. Yeah. So glad that she did that. She must have been guided or something To know just what to do. Absolutely. That's so beautiful. Yep. Thank you. okay, so the doctors First of all, they didn't know what it was, and they didn't know about survival. And how was it getting the news that they wouldn't know if Heather would survive. What was your reaction to that? tell us more about that. So when I was in Rocking Heather, I was looking down at her and I was thinking, this is the baby that was inside me for so long. This is the baby that I've been waiting for. And I was just kind of touching her arms and her little hands and Touching her face, and suddenly my heart just opened up and was filled with the most undescribable love you could ever imagine. And it's that love that's carried me through everything. Yeah. And after the nurses took Heather back to the nursery, the pediatrician came in and he started talking about. something about what if this is genetics, this could be genetics, we don't know. and I just thought, well, if if this is gonna happen again, I'm gonna get fixed. I'm gonna make sure this doesn't happen again. Another knee-jerk reaction. So I went back to my room and Terry'd gone to work that day, and he came back for the little celebratory dinner that had a little pink baby on the cake. While we were eating dinner, there was a knock at the door, and in walked a whole team of doctors. And you just you know there's something going on. Yeah. So the the main doctor, who is a cardiologist, said I was at home eating my dinner and they called me about. Heather and they said this baby's aspirating, she has jaundice, she has all these problems, and now we found a heart murmur. So we don't know what to do. And the doctor said, I wondered why they were calling me at all. Obviously this baby has so many problems. Yeah. She's probably not gonna live. He said, but I just couldn't go on eating my dinner, knowing I hadn't tried. Right. So he had us sign papers to give them permission to take Heather and transfer her to primary children's hospital where he could do surgery to find out what's wrong with her heart. And at the same time, they had us sign papers giving them permission to do an autopsy. And then they all left. Terry and I were left alone again, waiting to hear from the doctor if our baby was going to live or die. Wow. And Terry and I were talking about it and I said, you know, I watched her struggle just to eat, 'cause the nurses were trying to feed her and with a cleft palate, the milk just comes back out the nose and out the mouth. It doesn't go down. So I'm watching this baby struggle to eat, struggle to breathe. I can see all of the disabilities that she has physically. We don't know if she can see or hear. We don't know how to raise a child like this. Maybe it would be for the best if she didn't make it. And looking back, I realize I was already practicing. A form of acceptance that the way I accept things is I find out something positive about what is going to happen or what is happening. So the positive was she won't have to suffer. And it will all end. Mm-hmm. Yeah. Her suffering and our suffering. And I look back on her, you might think, wow, how do you feel about yourself or thinking that way? Yeah. And again, it's that it makes logical sense. it doesn't make sense from the heart. This is my baby, but it doesn't feel totally like my baby yet. And I've watched her suffer. So I just look back on me as that young new mother that says, I don't want my baby to suffer. Yeah. And I understand my reaction. So I don't have any judgments about it. And as soon as the doctor came back, he told us the heart murmur was just a valve that usually closes soon after birth and within a year. And that hers would probably close. And if he'd known it looked that good, he wouldn't have done anything. And for one split second, I was disappointed. Wow. Yeah. But then I just realign with what's happening and choose to focus on what's the next step? What can I do now? Mm-hmm. Yeah. And you can look back on that early version of you with so much compassion. And I've actually heard Heather share about that as well and say how much compassion she has. which I thought was beautiful. So okay, so there was a book that was given to you when you were going through this a bishop gave it to you that was called When Bad Things Happen to Good People. And you said it changed you. and what was the takeaway from that? what did that book give you? Well, I was raised in a culture that I interpreted that I was very special. I'm very special because God doesn't give. children with disabilities to parents that aren't special. Yes. And of course, who doesn't want to be special? Right. So I really liked feeling special. Well then when the bishop figured out I was probably saying why did this happen to me? Why did this happen at all? Why does it happen to anybody? So he gave me this book. So I read this book, and afterwards I realized I'm not special. It happens to everyone, good or bad. It's part of life. So it took something away from me in that I realized I'm not special. But it also gave me something to feel like I'm part of humankind with everyone that. It can happen to anybody. Right. And you're not bad. And you're not special. it just can happen. You can be good, you can be bad, it can happen. Yeah. It just is. Bad things happen to good people and good things happen to bad people. Yeah, that's everything in between. Yeah. Yeah. I've learned that lesson as well, actually. Okay, so let's talk about Logan He was born on April Fool's Day. and your friend thought you were joking because I mean what are the chances? I'll let you talk about that a little bit, but to have another child with the same condition So Heather was in the hospital for two weeks and then I brought her home and it was doctor appointments and me raising my little baby girl. Yeah. So I felt like any other mother. When Heather was 18 months old, the geneticist called. Now, originally they guessed that Heather might have a genetic condition called treachercollins. Mm-hmm. Treacher Collins has a 50% inheritance risk. If a parent carries a gene, their child has a 50% chance. But with treacher collins, they have normal limbs. So it didn't quite fit. So the doctor called us in and said there is this condition called postaxial acrofacial desostosis. Later called Miller syndrome, thank heavens. Okay, I was gonna say So Miller syndrome, and at that time Heather was eighteen months old, and there are only three cases in medical history in the journals. Wow. So they said, We're gonna send all the information that we've got about Heather to this doctor somewhere else, and he's gonna look at everything and he's gonna help us determine Is it Treacher Collins? Is it Miller syndrome? What is it? Yeah. And so they came back and they said, we believe it's this rare condition called Miller syndrome. And the chances they still didn't know the recurrence risk of Miller syndrome, because there's only three cases in medical history. So this particular geneticist who Did not do the right thing, said it's not going to happen again. This this is like a chain mutation. We don't know why it happened. The genes just started going one way and they kept rolling, and then you got this condition. But chances of it happening again are probably one in a million. They're probably even less than that because it already happened. Like someone getting struck by lightning. Yeah. But you can only get struck by lightning once. Yeah. Well, green lights. I wanted to have another baby. Yeah. Which is kind of surprising now when I look back with all of the surgeries and stuff with Heather. So I was actually really excited and I wanted to have the baby when Heather was three years old, and I wanted to have a boy. So I did what any mother would do, and I found an article in cosmopolitan that said how to have a boy and I followed the directions and I got pregnant with Logan. Amazing. So I'm pregnant with Logan and I am one hundred percent convinced he's gonna be healthy strong. Not to mention I had the faith that could move mountains. Yeah. So I had the faith that Logan would be healthy. So at seven months along, I thought, well, I think he's gonna be healthy, but let's just not have any surprises in the delivery room. So I got an ultrasound. They didn't do ultrasounds routinely back then, and they weren't very good. So while I was in getting my ultrasound, the technician said, You have a healthy baby girl. I said, Yay! And I swear it looks like a fist in that picture, which is nothing like the pictures you guys have today. So, you know, I just went along and time to go to the hospital and give birth to Logan. We're taking Heather to my mom's. And it's April Fool's Day. Come on. Terry said, We should tell everybody that we had a boy and it's just like Heather, and then tell them it's April Fool's. I said, That would be so mean. No way, we can't do that. And so we dropped Heather off, went to the hospital, we're being wheeled into the delivery room. Again, I don't know what the sex of my baby is, other than what the technician suggested. So they pull Logan out of my body. And it's the same bent arms. Wow. It's unbelievable. And Terry said, son of a and I wanted to nurse so bad. But when you have a cleft palate, they can't nurse, they can't get any suction. And I see my sister, the weight just dropped off of her because she nursed. And I'd made a big cape and it had a sign on it that I'd applicate that said out to lunch. And I was determined to nurse in public. yeah. So I was really disappointed that he had a cleft palate, but my goodness. With Heather, it was literally shocking. when she was born, as I described to you. But with Logan, I'd already had Heather for three years. Yeah. I already knew the ropes. I loved her with all my heart. Yeah. And now I had this adorable little boy that had red hair that I wasn't afraid, but I was afraid because he was having trouble breathing. So he was put into a special machine. he was put into a incubator type place to keep him warm, to make sure he had oxygen, and he was there for two weeks. So I had to go home without him. And that was hard. Very hard to go home without him. So we brought Logan home finally. And within a couple of weeks. I was trying to feed him with a lamb's nipple, which is about that long. So you can put it all the way to the back of their throat so they don't gag. And then you can squeeze a ball and it squirts the milk down. So it won't come out their nose. It's kind of a race. Get it down before it comes out the nose. So that's how I fed Heather the whole time. So I never had to tube feed Heather. But with Logan he aspirated on the formula and I had to call nine one one. And they had to rush him to the hospital. And after that, that's when I knew that there's no way that I I would try and feed him with a lamb's nipples. So I tubed Logan for six months. And we just never knew. We just never knew how long they would live. We didn't know anything about Miller syndrome. We knew they had problems with their lungs, but we didn't know what it was, if it was from aspirating on formula. So we're now just focusing on what I can control instead of what I can't control. Yes. And moving forward. Yep. Yep. And you did that very beautifully. I didn't fully understand this because you said it was such a rare mutation which was wrong. So because later you had genetic testing done where you were the first ones that had this full genetic testing that determined so does that mean it wasn't a mutation, it was due to genetics? Right. Wow. Okay. So for thirty three years and this is what I didn't understand. So we did not know what caused Heather and Logan's. We didn't know. We didn't know for thirty-three years. Wow. Two thousand ten. Wow. So does that mean that it wasn't like getting hit by lightning because it was in the genetics? Or okay. Terry and Logan. So he was completely wrong. He was completely wrong. He was completely wrong. And my husband's a human geneticist, and he gets so upset when I say the geneticist told us, like plural. he wants me to be very specific. I see. That a geneticist said the wrong thing. And in the medical students, he'll say to them, So what odds would you give this parent, these parents? There's three cases, or he'll say there's only a handful. So what are you gonna tell them? And they just sit there and some of them will go fifty fifty. I'll go, No, you know, and someone's like, I don't know. And he goes, That's the right answer. Yes, that is the right answer. That is the right answer. We don't know. We don't know. We don't know. They didn't know. They couldn't know. Do you know if you're the only person who's had multiple with that? There is another family in New Zealand. Uh-huh. That have a normal, a healthy daughter, and then they had Erica who has Miller syndrome. And then they had Sherman who has Miller syndrome. So they were the only family in the world, because there's only about 30 cases in the world. So they were the first family that had two. Now on Facebook I discovered there is a family in Brazil who have two little girls that both have Miller syndrome. So now there's three families in the world that we know of. Lynn always teaches me to say that we know of because you know, there's people that haven't gotten diagnosed. There's people living in places where they don't have the medical technology and stuff and or the money even to go go get it, you know, diagnosed. that's interesting. So yeah. Wow. Wow. Okay. so let's talk about Heather and Logan as siblings. What were they like as siblings and how did they differ? and was Heather excited to have a little brother? Heather was so excited to have a little brother. And It was so good for them to have each other. When I was pregnant with Logan and I still had the kind of faith that I thought could move mountains. And I said, and bless that I'll have a boy because Heather won't have to compete with a sister that's gonna do all these cheerleader and boyfriends and dating, and she's gonna feel So different and left out. And then I said, Well, who am I to tell God what's best for Heather? And then I had Logan. Wow. that's amazing. And Logan has been amazing for Heather because they always had each other. They always had a friend to play with. They understood each other. in a way, especially as they got older, they understood each other in a way that I couldn't possibly understand them because I was 100% healthy as far as I knew. So how could I possibly understand them truly? Mm-hmm. Being a fully abled person. Yeah. With a fully able body. So they had each other. So they knew they always had someone to play with and they could relate to. And they could talk to and they could complain to. And that doesn't mean they always aligned because Heather, we found later in their twenties, we found out they were on the autism spectrum. And Heather, it was really interesting because it was like she was in this protective bubble. Yeah. She didn't see people staring at her. She didn't realize nobody sat by her in the auditorium. She did not realize that kind of thing. Yeah. Logan, on the other hand, was extremely hypersensitive to being stared at. He knew his arms were different and not normal, and he didn't like that. And he actually went into a form of denial that he told himself, I'm normal. And so it was really hard for Logan Because Heather was so unaware of how she looked in public when she would walk fast and swing her little arms and she wouldn't try and walk normal. She wouldn't try and move normal. And that was really hard for Logan because he was in denial he was very hyper focused on how people did stuff. And he copied them. And he learned how to walk and move and pick up a glass, like he'd crush his can so that he could use one hand. Because his hands are so little, he could not get his hand all the way around a can without crushing it. Whereas Heather would just put it in the palm of one hand and kind of balance it and use two hands. Mm-hmm. so they had those differences, but then they really supported each other in strengths and interests Heather was a writer, very creative. Logan was an artist. They both supported each other in looking for the beauty in life. So Heather writes about the beauty in life. Logan paints beauty, the beauty in life. That's true. And so they supported, and then later they actually drew courage from each other. I was invited to speak to medical students by my boyfriend at the time. Who's my husband now, who is a genetic professor at the University of Utah, he teaches the first year medical students. Well, I started talking alone, and then I would bring Heather and Logan up to answer questions. And they drew on each other's courage to even come. Come on, most people do not want to walk up in front of 120 anybody to speak. So they. drew on each other's courage so they could public speak. So they both ended up not just answering questions, but they both had their own talks that they give, which are now on my YouTube channel because they both have so many insights to share about their experiences, both medically and socially. And so they've just complemented each other's life so well. I couldn't have asked for anything more perfect for Heather than Logan. Yes. It's so true. Worked out just as it should. Yeah. And they're so good. I've watched the clips with them I'll put the links to that as well so people can watch those. they're really good. Thank you. Okay. So you've talked about how you've spoken in front of groups of medical students. And what do you most want people to understand about how to talk to and be compassionate with people who are getting hard news or people who might be in shock? You know, I say I didn't want to hear those three words. I'm so sorry. And yet When I hear someone who loses a child or a anyone they love or anything that's happened to them, I am so sorry. Yeah. That it happened to them. Yeah, I know. And I think back of how I reacted when Heather was born. And the most important thing that I tell the medical students and that I could tell people is just to remember that these are people that you're talking to. Yeah. Especially in the medical field. They're not a syndrome. And to be in their heart, to come from That place when you say, I care about you, come from that place, not your head. Yes. And if you can come from your heart. It's very hard to say the wrong thing. You're right. It's when you go to your head worrying about what you're gonna say that you can say the wrong thing and come across like a robot mechanical. So just for example. The doctor in the delivery room when Heather was born. Right after she was born, he looked at me and he said Debbie, I am so sorry. This is not the kind of baby I anticipated for you. And here it is, almost 50 years later, and I still remember his words. Wow. After Logan was born, I'm in the recovery room. The pediatrician came in and he slapped me on the leg and he said, Congratulations, you just made medical history. Now I don't remember being offended by that, but when I tell the medical students that, there is a gasp in the audience. Yeah. That is not the right thing to say. And so I come from my heart. I have another good example that I learned with Logan, some of the most powerful lessons I've learned are from Heather and Logan. I'm sure. So Logan had so many challenges, so many struggles through his twenties, thirties. And the only way he knew how to communicate to me would be to tell me all of his problems. And it was so painful for me because I felt so bad that my child was suffering so much. Right. So what would happen is it hurt so much in my heart that I didn't realize it, but I was going to my head. I was running away. I was running away from my heart. And what that looked like was. Giving Logan advice. Well, have you tried this? Well, how about that? Well, let's do this. And in doing that, not realizing that I just shut him up. Yeah. Because instead of Logan talking, now I'm talking. And I'm in my head. I'm not in my heart and I'm not a good listener. Yeah. That was an aha moment. Truly an aha moment. That stay in the heart. That's how you're a good listener. Instead of thinking about your own pain, come from Love come from love, love for that other human being that is suffering right now. Yeah. And you don't have to suffer with them. You just want to feel your love for them. Yeah. Instead of running away from how sad you are for them. Because if all you feel is how sad you are, it paralyzes you. you can't help them when you're paralyzed. And that's how doctors are as well. So what can they say? Well, Debbie, I want you to know I'm here for you. Yeah. I want to help you in every way I can. This is a challenging thing that's happened to you. Yeah. Yeah. And I'm here. That's spot on. But really, if you come from your heart. You can't go wrong. And if it's I'm so sorry, it's okay. You are sorry. Mm-hmm. That's so good. That was so perfectly said. because I hear that a lot with things with grief too, not knowing what to say and yeah. And you're stumbling over your words, you're trying to think of the right thing to say. And it's often there isn't when people say there are no words, yeah, there aren't. There aren't any words. Just just be there and give love. Yeah. That's all you can do. Sometimes if it's somebody, I'll just say, I'm hugging you heart to heart. You know, we all have social media and hear of these things all the time. Hugging you heart to heart. Mm-hmm. Sending much love to you. Mm-hmm. Yeah. So I love that. I just picture the hug and the love just coming through the heart. Go to go to your heart and feel the love. Yeah. Thank you. Thank you, thank you. Okay, so there was a plastic surgeon who seemed very cold and clinical and in the end he ended up being a favorite of yours. so what did you learn about him and about first impressions through that? This was always a fun story to tell the medical students, you know, because they want to learn how to be the best doctor. So I'd only had Heather home. Well, she was in intensive care for two weeks, so I only had her home for probably a week before I was going to my first doctor appointment, which happened to be the plastic surgeon, because he was going to close the soft part of her palate, which would help help her eat a little better. So I was waiting in his office. I've got my little baby girl, and he walks in and he just looks at Heather and he said, What's her problem? And I'm pretty slow to react. Wow. Process. I cannot. You know. And I said, Well, they think she might have treacher collins. And he said, Well, treacher collins isn't her only problem. Well, he was right. But, you know, by the time I left he said, Did you do drugs? Now, granted, they do ask these questions. They're trying to figure it out, but They don't ask it like that. No. Did you do drugs? Did their dad do drugs? Yeah. Did you do something that caused this? It's like, give me a break. So I walked out to my car. I can go right back there because it was so emotional. And I just draped over my steering wheel and sobbed. It was so sad to experience that. So I went home. I called the office and I scheduled his associate to do the surgery because I wasn't gonna have him touch my baby. So the surgery was done. Every morning the doctors do their rounds. I would get up back up to the hospital by 6 a.m. so I could be there, and in walked Mr. Wonderful. And so he's the one that I had to deal with every single morning. And in having that one-on-one experience with him, and he was probably in the surgery with the other doctor. And you know, you never really know which doctor actually did the surgery. So I just got to know him better and I could see how good of a doctor he was. And I could see that he cared. I could feel that he cared. Mm-hmm. And so maybe that was just a bad day for him. Maybe he just heard bad news. Maybe his mother just died. You don't know what is happening in a person's life. I know we all hear that. Yeah. But it really is true. It is very true. We don't know what just happened to someone when you see them at their worst. So you know, let's just give each other a break. Yeah. Let's not assume that the way we experienced a person is the way they are all the time. Absolutely. I'm certainly not the same way all the time. Mm-hmm. Mm-hmm. Absolutely. And also as I learned how to communicate better in a non-confrontive way. If Now back then daughters were gods to me, so I'm not sure I would have done this back then, but yeah. But now we're equals. Yeah. And I would probably say You may not realize how you just asked me that question. Did you mean to ask it to me that way? Cause it really hurt. I really feel hurt. Mm-hmm. Yeah. And any little question to someone who's acting in a way that isn't appropriate, it brings their attention to it and it raises their awareness. Mm-hmm. And then you don't fester over it and run home and have Yes. We actually can raise someone's consciousness, including our own. Absolutely and having the courage to just say, so this reminds me of a story I've actually never really told, I don't think. I was a hairstylist for forty years. Mm-hmm. And one of my wonderful customers who loves all of us came in and told me a joke. It was about a harelip Well, I don't know if you guys know it, but a harelip is someone who had a cleft palate. So he tells me this joke and I wow had a moment. It's a teaching moment. Do I feel like dealing with it? Now you don't always feel like dealing with it. It's like, okay, I love John. If John knew what he just did, he would be horrified. Mm-hmm. And I just said, I just want you to know I'm not offended. It's just one of those jokes. But I just want to raise your awareness that Heather and Logan had a harelip. Not a lip, but a palette. Yeah. I said a cleft palette is that person had a cleft lip. Yeah. And Heather and Logan were fortunate they didn't, but he's like, I am so sorry. I am so sorry. You know, he was just horrified and I guarantee you. I absolutely know because he is a wonderful man. Yeah. He was very careful in the future. Mm-hmm. Yeah. that's a good story that shows that example. people's one behavior doesn't define who they are as a person. That's right. Yeah. I guess that kind of leads into the next question here. as we talk about your your marriage to Terry. And how that ended and Terry ended up leaving and you guys didn't talk about any of it. And I'm sure that came with a cost. And so how can you look back at those younger versions of yourselves with compassion? So Terry and I loved each other. We loved the kids, but life has its stresses and It wasn't natural for either one of us because it was just our life. So so it didn't occur to us, and I really wasn't open to therapy when Heather was born, because being raised in a dysfunctional home where therapy was involved, I didn't see positive results from therapy. And to be honest, I think I put myself above therapy, which therapy is great. when you find the right therapist. True. So we were living in a home that we bought when Logan was born. And finances were really hard because we now had so many medical bills. And when we didn't have insurance, when Heather was born, we got help with Medicaid. But when we had insurance, and now we have two disabled kids and lots of surgeries. Insurance doesn't help as much. There's copays that are due. There's no way that Terry and I could cover those. Right. So we were struggling and we had to put our home up for sale. And I watched the bank drive away our most reliable car because we could not afford the payments. So now we have to move. We sold our home. We have nowhere to go. Because we were going to go take care of his grandparents in southern Utah and they found someone else. They couldn't wait. We had to stay for surgeries. So luckily, my dad had a duplex that no one was living in. My sister lived in one side and the other side was empty. So we moved there. And Terry lost his job. So he doesn't have a job. And we have these two disabled kids and all these medical bills. And Terry's depressed. And all I can think of was any job is better than no job. So why don't you just go get a job while I'm waiting for a good job? And so not only was there not really good communication, there was also me thinking I knew what to do, and maybe him thinking he knew what to do. And things got really tough. And what I didn't know until many years later was that Terry was feeling suicidal and he had made the decision that he was going to take his own life. Tomorrow. And then tomorrow would come and he'd say, Well, maybe I'll go put gas in the car. And he was still here. And then he'd say, Tomorrow. Well, then he got a job. And then he got attracted to his secretary at the job. Well, he had an affair that was devastating, absolutely devastating to me. Because I'm still being what I consider a good wife and a mother and living my purpose. So I didn't realize the pressures that he was feeling at that time for all the financial responsibility for the family. Mm-hmm. And it was a lot for anybody. So what is more exciting than a new love? Yeah. Not a lot. Yeah. So that kept him alive. Yeah. And I didn't know what was going on, or at some point I was probably in denial about what was going on. So eventually it came out that he was in fact having an affair and our marriage was over because I wasn't gonna stay married to a man that was living with another woman now. And I'm still sort of in denial 'cause I'm saying, okay, if we wanna be married, because he was saying all the right things, you know. Yeah. I wanna get back on my feet and then. So it's like, well, then we can get married again. So I'm still thinking maybe it can all work out 'cause hey, marriage is forever, right? So I look back on him and me at that age. There's no way we could have communicated. Neither one of us came from families that knew how to communicate. Yeah. We aren't taught how to communicate. There's just no way. We were both on autopilot, just surviving. Yeah. So I look at. Terry and Debbie at that age, these young parents of these two disabled children. And I do have so much compassion for them. Yeah. So much compassion. Absolutely. For both of them. And I'm so happy that Terry stayed alive because I wouldn't have wanted Heather and Logan to grow up thinking their dad killed himself because he couldn't handle the pressures of having them. Yeah. Yeah. And also Terry helped me financially. He paid his child support. He helped me with Christmases. He helped me with school clothes as much as he could. He helped me financially. Mm-hmm. So you just never know what's right and what's wrong and what's good and what's bad. Mm-hmm. Unless you're walking in someone's shoes and you are them. Exactly. You have to be them. And none of us are each other. No. So that's the definition of compassion and forgiveness. And I don't know. No. I don't know. I don't know what they went through. So who am I to judge? Exactly. Yeah, that says so much about your heart because so many people in that situation would end up very bitter and And I'm not saying there's anything I mean They can't react any other way either. Yeah. Because they're reacting there. It's painful. It is. It is so painful. Yeah. To To think That you're gonna be with someone your whole life. Mm-hmm. And having an affair wasn't even an option in my yeah mind. When I saw articles in magazines about having an affair, I just skipped over them. That would never happen to me. Mm-hmm. Mm-hmm. Never. Mm-hmm. But you never know. Yeah, it's true. So many things that that you've been through are things that you would think That could never happen to me. That seems like to be a theme. That's so true. But you keep overcoming. okay, so you've talked about your faith and growing up in a faith, and at some point of time you lost faith. and I don't know If you lost faith in a greater power, but what was it like to lose that faith and how did that evolve for you? Yes, each unexpected event in my life cracked my faith and took a little piece of it until pretty soon there was none. I had no faith in a higher power whatsoever. I wouldn't have known that was why things were so hard. Mm-hmm. But I developed an eating disorder, bulimia. So it started out pretty innocently. I heard about it. And I thought, huh, I can have the cake and put my finger down my throat and get rid of the cake. So with every addiction, is my understanding, is that at first you're in control. So I was so scared, sad, tired, overwhelmed, worried. Especially when the sun went down at night. So I would eat. And what I realized was that when I put something that tastes good in my mouth, I was no longer feeling anything. So I was literally killing my feelings. Yeah. It's almost a way of killing yourself without dying. Yeah, yeah. So That's what happens if you don't feel your feelings and you don't deal with them. Is it will come out somehow, often with some kind of addiction or mistreating someone. So that's what happened to me. I had no faith to lean on. I had all these feelings that I didn't know what to do with. And I instead of going to you could say God, I went to food. So Of course I didn't want to gain weight, so I knew I had to do something, but it came to a head and I went to the hospital to a payphone downstairs, called upstairs and said, I I need help. Wow. So I found out about Overeaters Anonymous and the 12 step program. And the first step is to admit that I'm powerless, which I did when I made that phone call. And then I had to find a power greater than me, and I didn't have one. So what I learned to realize was that. Two people, Ali you and me are a power greater than me. Yeah. So that's a power greater than me. Call your friend. Yeah. Then I was going to a group of other people that had bulimia or anorexia, and they became the power greater than me, a sponsor. So when you do a 12-step program and you get a sponsor, they become a power greater than you alone. So you reach out for that power greater than you. And all I could do was pray that I would want to quit. Yeah. Because I didn't want to quit. Yeah. So I will never forget this another aha moment. So I'm going to the group. I'm wanting to believe in a power greater than myself. I want to want to quit. I want help. But I'm helpless. Mm-hmm. One night I'm having all those feelings. Kids are asleep. I go to the cupboard. I get a box of cookies. And there's no choice. When you're an addict, you don't get a choice. You're using your drug of choice. before you even have a choice. Mm-hmm. So I get that cookie to my mouth and suddenly a power greater than me. Stopped me from putting it in my mouth. And I had a moment where I could see and choose to do something differently. And I know I couldn't have done that myself. That was a power greater than me. And I still didn't know what that power was. But I knew it was a power greater than me. So now I had an experience that I could draw on in every challenge. I could talk to my power greater than me. Wow. And I could ask for help. Wow. And then I started to recognize. Asking for help, even if it's in feeling better. I feel so crappy today. Help me. Yeah. And almost forgetting that I asked. Yeah. And like an hour later, it's like, my gosh, I feel better. You did ask. Yeah. and that was in my late twenties, and I'm 70 now, so I've been practicing this for a long time. That's good. And so that's how my Not believing in a power greater than me took me into the deepest, darkest place I've ever been in. And then experiencing a power greater than me, rescuing me from myself, and then experiencing all of the years and surgeries and challenges since that I have this intuition, you could say. Yeah. This connection to spirit that It's like it's guiding me, almost like it's built in. Like a magnet that goes to a magnet. I have this power greater than me that Like it's leading me to the next step, to the next phone call, to the next thing, to the next person. Yeah. And it's changed my life. Wow. That's amazing that that occurred at that age. It's almost like you can see like the thread through your life and all these things that you never thought would happen and you never thought that you could overcome. But it's like one leads you to the next aha moment that helps you with the next thing. It's that's right. And at that same time, I was also, I went on a double date and this woman just radiated. And I said, What's going on? Yeah. With you. And she told me about this personal growth seminar called Life Spring. It's a transformational And it's wow. She was different from anyone. She had a light. Wow. So I went to an introduction. In the introduction, they had us do what you call a dyad, where you're sitting knee to knee with one other person and it's a stranger. And it's someone with a name tag that's different color than yours because they've done the training. And I'm gonna tell this person my answer. And it's what are you proud of yourself for? And I said, I'm proud of Being the mom of these two disabled kids. And then he answered the question. Then they said, tell me something that you've never told anyone. Well, I have an eating disorder, and I haven't told anybody except people with eating disorders. And there is no way I'm telling this stranger about that. So I let the time go out and I didn't say anything. My mind went to bulimia. He said, I'm an artist. And I went, why did my mind go to this and his mind went to that? Yeah. I have to find out. So I did the seminar. And in the seminar, they create a safe environment so you can just act however you act in life. And if you want to get your money's worth, which I did, I was like, that's a lot of money. $350 to me was a lot of money. And I did a lot of nasty jobs to try and make money to get there. So you parti I participated. Yeah. And it's so interesting when you feel safe and everybody's doing it. You start acting like yourself, but it's like standing outside of yourself watching yourself. And you've never watched yourself that way. So I think I'm all shy and bashful in high school, even though I gave a talk, even though I ran for student body officer and competed. And I think I'm shy. Yeah. Still in my late 20s, and I think I'm shy. And I see myself jump up and answer the questions and participate. And suddenly I recognize that. I don't know myself at all. Yeah. Yeah. So Overeaters Anonymous, learning about a higher power, and then doing that training, which helped me learn to know myself better, which helps me interact with my higher power better because I know myself better. Yes. And then I found Course in Miracles. My brother told me about it and I was so committed to getting well. That I immediately started doing the three hundred and sixty-five lessons that are in it and reading the text all at the same time. And all of that together transformed me from a self-judgmental person and judgmental of others to a forgiving, loving person that that's all there is and that all the higher power is is love. Mm-hmm. Yeah. So right. And it kind of makes you look at all these things while you would think you wouldn't want all these things to happen, they were gifts in a way that pulled off these layers that let you become the person that you were truly inside. Your authentic you. Which in turn helps you connect more with that greater power. So absolutely. Yeah, so beautiful. okay. So you've described taking bits and pieces from every religion. can you talk about how your spirituality looks today? So you've gotten a little bit of an idea of what my spirituality looks like today. That's true. So if I say I know when I'm talking about my spirituality, please remember I only know for me, not for you. I would never judge what you believe because what you believe is giving you the strength and the direction and the guardrails and the structure that you need in your life. So, what I found for myself is that. Organized religion is way too small for my experience of my higher power and my spirituality. And I believe that there is this higher power that is beyond anything we can imagine. And it's a powerful love that is so much stronger than the love that we experience in this life, we can't even imagine it. And that that source created each one of us. We are each a piece of that source. So we are each a piece of that love and that power, even though we don't remember. So it's sort of like life spring. In that if I'd known what was going to happen in Lifespring, I would not have learned the lessons that I learned. So look at life on earth in a physical body, using our creative powers in the physical world. Yes. And if we knew, if we remembered what we truly are and what our powers are, we wouldn't learn. So we're here, we're here to expand our energy. to expand our experiences, to learn as much as we can, to grow. And believe it or not, from one of my spiritual teachers that I call, well, they call themselves Abraham. We're here to have fun. Yeah. We are here to have fun. Yeah. So my form of spirituality is I'm here to have fun. if I can connect my heart and connect to love, which is connecting to source, I am going to create a better life for myself. Yeah. Because how I feel is gonna affect my choice. Yep. So if I connect to love and I connect to my higher power and I use my creative powers, I'm not gonna hurt people. And I'm going to create more positive experience in my life, which for me is I want to feel peace, joy, and love as many minutes of every day as I possibly can. Now, don't get me wrong, I'm not even close to, but I have to be aware of how I'm feeling. Yeah. If I wake up and I'm feeling really cranky, I notice it. Yeah. what's going on? Do you need to just go lay down on your bed, take five minutes, and start over? And I don't always do that, but that's my goal. Mm-hmm. So if I'm doing something I love, like making videos or editing photos, I love doing those things. But if I've been sitting there too long or I'm really wanted to do something else like my chores. Mm-hmm. And all of a sudden I don't feel good. I'm not having fun anymore. Yeah. So it's important for me to recognize that. wow, I like doing this, but I'm done now. Mm-hmm. so I want to go from person to chore to activity to think, whatever, where I'm gonna feel satisfied, content, happy, a more positive feeling. Yeah. so sometimes it takes me saying, you'll feel better tomorrow, or you'll feel better in a little while. And that'll help me feel better in that moment. Mm-hmm. and I believe that Heather, my daughter, who's in spirit for the last five years, And guides who are other souls who they're committed to helping me. I believe we all have guides that's that feeling inside of me that I tell you about that is saying, go this way. So when I was looking for a duplex for my two disabled kids that would be all one level with a garage by the door, everything just so. And I was driving home on a Friday night and I was exhausted and it was late. It was gonna be dinner time and steak night with my husband and I needed to get home and rest. And I drove past this duplex with the for sale sign and I'm like, wow, well, call tomorrow. And I started driving and that it was a voice. It's a voice. It's my voice. But it's a voice, and it said, turn around. I'm like I need to go home, I need to rest, I want to be a good partner for my husband tonight and have dinner. And I Turn around. Like, okay, okay. It's like I can't not turn around. Yeah. So I turn around, I go back down, I call my realtor, I tell her about it, and she says that she called on it and an offer had been put in. So We had already been through this one time before, so we had cash. We had a cash offer. So she told the realtor that this couple has a cash offer. Will you take a backup offer? And the person said yes, because it's a cash offer, we will. So that's Friday night. By Monday morning, the person that had their name on the duplex backed out. I own the duplex now and Logan lives there. And that is just an example that if I do my very best to stay connected to positive energy, to try and improve my mood, to try and stay connected to a power greater than me, then I am led to a better life. Yeah. Happier choices. Yeah. Better choices. So I don't always have control over what happens in my life, obviously. Right. But I do have control over the choice I make about what I'm gonna do next. Yeah. And if I'm connected to source, I make a better choice. Absolutely. So that's my spirituality right there. Absolutely. Beautiful. And you do have a choice in making sure that you do connect to your spirituality so that you yes are in tune to hear the voice that gets you on that path. So when I wake up in the morning I usually don't want to get up when my bladder wakes me up. Mm-hmm. So I come back to bed, I lay on my back, I put my headphones on, and I turn on something positive, whether it's whatever. Mm-hmm. Whether it's a book I'm reading, a spiritual growth, whether it's a YouTube video, a near death experience, whatever it is, and I set the alarm for thirty minutes 'cause I'll sleep better if I go back to sleep if it doesn't keep going on and on and on. Yeah. So I just I literally start every day with something spiritual. Mm-hmm. Yeah, that's so perfect. I actually do the same thing. And you've sent me a couple those Abraham videos. And now my YouTube has recognized like, she listens to this and so now a lot of times it'll suggest that and I've been listening to it. It's very easy to find something positive to listen to. It is, yes. And it really does help. And it's so much easier nowadays than it was for me back then. I mean, I had to go to an overeaters anonymous group at some church and take my kids. I couldn't go online. And now there's so many positive things online And I know it's hard because the truth is sometimes you don't want to change how you feel. Yeah. You need to feel bad. You need to cry. You need to be depressed. You need to feel sorry for yourself. That's okay. Yeah. Do it. Yeah. Absolutely do it. Because that's important because then it'll release that energy. Mm-hmm. And then you'll feel better. Yeah. Then if you keep stuffing it down. Yes. I'm glad that you brought that up because I think a lot of people probably listening, 'Cause I've felt that when people are like, just be positive. And it's like sometimes I think that I need to feel it and get this out of me because it's an energy and you need to let it flow through you. And I'm so glad that you said that too, because I have a lot of energy right here, right now, because we're doing this podcast with you out there, this audience, and I get a lot of energy when I'm doing something fun and exciting and And you know, there's always a little bit of nervousness and anticipation. But I'm like a Duracell battery and I'm like going strong right now, but I guarantee you when I'm done, I'm going home to take a nap. Yeah. And I do not always operate at this level. And so I rely very heavily, very heavily on finding a more positive thought, a more positive person, a more positive movie, and something positive to listen to. Mm. Yeah. And exercise and eat healthy and you know, It all helps and you're not alone. Yep. So ask for help. You don't have to believe it. You don't have to believe help is there. If you want to lose weight, if you want to get an exercise program, if you want a new job. Just ask for help, even if you don't believe you're gonna get it. Just ask for it. It opens up a little space. Yeah, it does. Thank you. Sure has for me. Yeah. Yeah. I can see that. Thank you. Okay, so let's talk about the landmark whole genome study. That found the cause of Miller syndrome, which was a really big deal. And why did that bring you to tears? Why was that so transformational for you? So when Heather and Logan were born, we didn't know why they had Miller syndrome. We didn't know why they had a lung disease. And the lung disease actually threatens their life. So we didn't know why. For 33 years. Thirty-three years. Long time. Why do your kids have this? I don't know. Heather and Logan are suffering. They don't know why. They don't know what caused it. And my husband is a geneticist. So he was at a meeting where someone was talking about doing genome sequencing on the first family. And Lynn said to them, Well, there's already a lot of studies like that underway. Have you ever thought about sequencing a family with a rare syndrome? And they said, No. Do you happen to know one? Well, wow. So what happened is we gave our blood, our parents gave their blood. There's one other family at that time in the world. that has two children with Miller syndrome. There were only 30 cases in the world, and there's probably more now probably a few more, but it's still so rare. There could be a hundred and it would still be rare. So they really needed blood from a family with two, and then another family with two, and then our parents to sequence our genome. And back then it was all new, it was expensive, it took a long time. I don't know what studies we had agreed to be in before, but we never got answers. We never knew what happened to it. It just kind of we gave them blood and that was the end of it. So we did not expect any answers. No answers. So the day that the scientists called and told us that they wanted to talk to us. And they wanted to talk to us as a family. And they had a genetic counselor there as well. And it was over a video conference, and they told us they found the gene that causes Miller syndrome. Wow. And my eyes just filled with tears. I was so happy because for 33 years we didn't have answers. I loved Heather and Logan so much. I was always looking for answers. What surgery should we do? What device can we buy? What can I do to help my kids have a better life? Have them be happier. But I couldn't tell them what caused their disease that caused them so much suffering. Yeah. So my love wasn't enough. Yeah. But then I think of the scientists and how much they love their work. Yeah. And they love to help people. So this is like a great big love story. So the scientists love doing their work. They found us. We found each other, synchronicity. And the scientists found the gene that causes Miller syndrome. And that wasn't all. They found the gene that causes their lung disease. And it even has a name. It's called primary ciliary dyskinesia. PCD. If any of you have experienced a paper straw, when the paper straw gets too wet, you go to suck on it and it flattens out. Well, that is called bronchiectasis, and that happens when you have PCD. So when you have PCD, the cilia that brings all the stuff out of the lungs and it works in your ears, it works in your fertility system. But Heather and Logan's don't work. So they couldn't bring up all of the mucus from their lungs. So for ten years they were on antibiotics as children because they always got sick and any cold could kill them. So I never knew how long they'd live. I never knew I knew they could die from a cold. I didn't expect them to live through elementary school. I certainly didn't expect them to live through junior high and high school and into adulthood. And now we knew why. now the treatment doesn't change. They were getting treated as if they had cystic fibrosis. And my nephew passed away at 31 with cystic fibrosis. So I am a carrier of the cystic fibrosis gene. But that is not what Heather and Logan have. They have to have another parent. Their dad does not have a gene first. So Miller syndrome is a recessive gene. And that means mom and dad both have to carry the gene. And then you have a 25% chance of having a recurrence with the child. Now that doesn't mean that If you have it once, you get to have three more times where it won't happen. That's not how it works. It's 25% with every pregnancy. Well, primary ciliary dyskinesia is also a recessive gene. So mom and dad, me and Terry both have a gene for PCD. We both have these two flawed genes that give our child. Twenty-five percent chance they'll have Miller syndrome and twenty-five percent chance they'll have PCD and both of my kids got both of those diseases. Both wow. One in seven billion odds that both of my children would get both of those diseases. It's unbelievable. It's mind boggling. It is mind boggling because I didn't realize I kept thinking that that was a symptom, that that was part of the Miller's. Right. That's what was so confusing about it. the few Miller syndrome kids that they knew of did not have the lung disease. Wow. So it was a complete mystery. It's just I mean wow. Wow. the chances that you would Meet and have with this person that had the same exact synchronicity? Well, back to spiritual beliefs. Yeah, you know what I was just saying. I know this is wild. Yes. And it was wild when I heard it too. But Heather, my daughter, introduced me to these books written by Robert Schultz. Prebirth planning. Yeah. Yeah. Now that doesn't mean that we plan every single thing in our life. Mm-hmm. But It made logical sense to me because of the way I believe that this life here is a life spring seminar. Yeah. It's like a drama, like a play, and we're here to learn and experience, but this isn't the real thing. The real thing is in another dimension. Yep. And so in this other dimension, we plan our lives here. Why wouldn't we help plan our lives? Hey, I want to go down to Earth and gee, you know, I want to learn this and this and this. Let's figure out. And synchronicities happen, and we choose our parents. And well, guess what? Yeah. I must have wanted to learn. And that doesn't mean that I literally chose to have this experience, but I do believe, as crazy as it sounds, that we kind of get to go, well, you're ready to go to Earth? Okay. Let's see you want this and this and this and you kinda want this kind of a parent because you want to have this kind of a personality and well there's a couple places that are possibilities. So you get a little peek at these parents in this family and these parents in this family, and then you say, Okay, well, let's go there. Mm-hmm. Well, guess what? I can't remember which if it was my mom or dad, if one of them had the Miller gene and one of them had you know, I don't know, but Hey, who knows, you know? Yeah. Who knows? But I'll tell you what it does do. It empowers me. Yeah. It empowers me to believe this. Yeah. I agree it really, really does. I agree with that. Yeah. Yeah. I never would have thought all these things either previous to my experience with my loss, but I fully believe that now. And in your situation. All the things that had to align, even with your parents and having you and Terry's parents, and then I didn't even think of this till you were just telling the story, but how interesting that you would marry a geneticist so that he could put you into the I mean and when you hear of how we met, I had a little sister, Shelly, who was 15 years younger than me. And Lynn had a computer tech up at the university that fixed his computer. Well, my 16-year-old sister was driving her dad's black Corvette downtown Salt Lake City, zooming around. Lynn had been invited out by Said to go downtown. Lynn said to Said, look, there goes a blonde. Saeed turns around, pulls Shelly over. She's 16 and Saeed was very handsome. And he writes his phone number on a $100 bill and gives it to her. So they start dating. Whoa. Then they want to line Lynn and me up. I'm really busy with two disabled kids, not seeing a guy exclusively, but seeing a guy that doesn't live in town. So it's pretty convenient because I'm busy. I see him once in a while. Lynn is very, very busy human geneticist, writing grants, doing what he does. And Shelly and Saeed are twisting our arms and we meet. Wow. And we like each other and we start dating. And we dated 10 years before we got married because I had two disabled kids. it's complicated. I honestly didn't believe that a marriage could survive the challenges that I had. So I just was I'd made my decision that I would stay single till Logan was 18, till he could qualify for Medicaid by himself and my income would no longer be included. And Lynn and I made it through all of that and we're together now and celebrating 37 years together since we met. Wow. Twenty-seven years married, thirty-seven years since we met. Synchronicity? Yeah. Yeah. and by the way, in that genetic study, So the scientists that were sequencing our family, the diseased family, actually won the race to sequence an entire family's genome. And we became the first family in the world to have our entire genome sequenced. And you know, a lot of people, especially Scientists and they want to know how it affected Heather and Logan. Right. Heather's amazing. She's just amazing. She's such a writer and such a thinker. And so Heather said she never felt like she belonged to humankind. She didn't belong in the treachery collins group. She didn't belong in the cystic fibrosis group. She knew she was different. She actually got a degree in psychology and diagnosed herself with autism and said, Mom, if you're gonna tell people that I have autism in your book, we need to get up an official diagnosis. So we did. So she didn't know that yet. So she didn't fit in anywhere. She actually, I guess you could say she felt like an alien. Yeah. Well, now that they found out that her diseases were caused by genes. She felt like she belonged to mankind. Yeah. Because we are all results of our genetic makeup. And she now is too. Yes. So she felt like Mother Nature was just working things out. And that gave her so much peace. I mean, imagine for 33 years you don't feel like you belong, and all of a sudden you feel like you belong. It's explained and Logan his reaction was great. So they were interviewing us for a news story on channel four when I discovered how Heather and Logan thought about these things. That's how I learned the answer. really? Yeah. And so they asked Logan and Logan said, Well, he said, There's so many things I can't do normally, like normal people. Yeah. Most things. But I can have a baby that's normal. If he wanted to, and he hasn't, his life's very full with his own challenges. If he wanted to have a baby, he could have a normal baby. That is that was huge. That is that was because the both the genes are so rare. Chances of him being with somebody that has the gene is like crazy, crazy impossible. Plus now you can and he said he really liked the idea of putting his bookmark in history. And there actually is a diagram. They don't name us because that would not be ethical. Right. But there is a diagram, I'll have to send it to you, Ali There is a diagram that shows the history of the genome sequencing and it shows the family. And that's us. that's you. so anyway it's medical marvel. Yeah. At least to us it is. You know, now it's Everybody's being sequenced and it's not as rare and exciting, but to us it was amazing. Yeah, to be the first. Yeah. How cool. So let's talk about another huge thing that happened in your life. There's already been so many, I can't believe there's more we'll get into, but you lived with a lot of symptoms throughout your life and you were misdiagnosed twice, and this has to do with MS. what kept pushing you for answers on that? What have I been talking about, right? Yes, so the first symptoms I had a little bit of numbness in my toes, like not much. What is this? It's so strange. So I go to a neurologist and they give me all the tests. They don't find anything and they say, We don't know. Mm-hmm. Hopefully it won't get worse. It may not. maybe it'll even go away. And I said, Okay, I can live with that. Then throughout seven more years, I started to get other sensations. For example, I thought my sock was bunching up in my shoe. So I take my shoe off to straighten out my sock. And my sock was smooth. Wow. So it was that the numbness had increased. So neuropathy, in other words, lots of people out there deal with neuropathy. Yeah. So the numbness was increasing to the ball of my foot and making it feel like my sock was bunched up, like I was walking on something. Mm-hmm. So then it started to creep up a little more. And sometimes I'd get home from working all day on my feet as a hairstylist, and I taught aerobics three days a week and did aerobics six days a week. Wow. So I was on my feet a lot. Yeah. So I'd come home at night, we'd be watching TV, and I'd think, this is weird. I think my ankle's a little numb. And I didn't know what MS was, but I did have one customer who I actually dated. He was one of the first people I dated after I was separated from Terry. And he was such a great dancer. Well, I did his hair, and we no longer dated, but He got MS. And even though he told me what it was, the lining around the nerves is being attacked by your immune system. So imagine a toaster and a mouse starts eating away at the lining around the wires, and pretty soon the wires start to short out. That's what MS is. Only it's my immune system and not a mouse. But I didn't know that. And I watched Keith, he had progressive MS. wow. I watched him go from this great dancer, an active man, to wheelchair, to a special vehicle that he could drive, trying to be as independent as he could, with weights over his bed so he could try and strengthen himself. And he was just getting to the point where. He was gonna have to move home with his mom and dad and he did not wanna do that. Wow. And he got his wish because I don't know exactly what happened, but I seem to remember he had a heart attack in the shower or something. And so he never did have to go home and live with mom and dad. So I knew about MS, but not really. Yeah. Yeah. Like it's not like I ever thought anything like that would happen to me. Yeah. And you know Most of the time I don't know what all the MS, this, like what is a lot. Which one do you have? So what happened, what finally got me to another neurologist was I was so cold, my hands and feet were cold, the numbness was going up my ankle a little bit. So I went to another neurologist. This was seven years later. And he said, Tarsal tunnel. That's the same thing as carpal tunnel, only with your feet. Uh-huh. And Renard's syndrome, which is the cold fingers, cold toes. And I went, makes sense. Okay. Yeah. Went home, had my answers. Then it was 15 years since the first neurologist. So another eight years went by. But this time what was happening was I was teaching aerobics and my I would wake up in the morning and my body literally felt like I'd been hit by a truck. And I said to my girlfriend, Do you feel like your body aches in the morning like you got hit by a truck since we're getting older? And she goes, No. I went, Weird. So I started to treat it with muscle relaxants and then fatigue. Fatigue is a huge symptom of MS. And I thought, well, that makes sense. I mean I'm a single mom, two disabled kids, working full-time, teaching aerobics. Of course I'm tired. Yeah. That makes sense. But what happened is my husband and I were on a trip in Hawaii and I was, I've always gotten car sick, but I was getting car sick way easier. because MS affects your central nervous system, and so does like motion sickness and stuff. That's all kind of part of the nervous system. And we'd get at the top of a hike and I'd fall asleep on the ground. Ants could crawl over me and I wouldn't even budge. I was so tired. Yeah. So we're in Hawaii and we get through hiking and we're parked by the beach to watch the sunset. And I'm too tired to get out of the car. I just want to sleep. Wow. I don't care about the sunset. Wow. Struggled that whole trip. So that was in March. So when I came home, Logan had an appointment with a neurologist because he was getting some symptoms that we found out were from medication. And so I honed in on his appointment. Said, hey, and he said, sounds like you need some further investigation, make an appointment. So I made an appointment. He did all the tests and then he even did a spinal tap because with MS, we have T cells. They're in our immune system. They're not supposed to cross the blood-brain barrier. But people with MS, the T cells cross the blood-brain barrier and start attacking places of the nerves in the brain. Wow. So he did that. It was negative. All the tests, obviously something's going on, he said, but he said, you can get a brain MRI if you want to, but I don't think we'll find anything. And I said, Okay, I want a brain MRI. I mean, there's no way I wasn't getting a brain MRI. Yeah. So he had the brain MRI, and I was waiting for the results. I was at work. It was a Friday afternoon. And the phone rang, and it was the doctor, and he says, I have the results of your MRI. And the person in my chair was a nurse. And we're looking in the mirror, making eye contact as I'm talking on the phone. And he said, Your suspicions are correct. And I said, MS. Now, granted, I wasn't really suspicious. I just knew MS was something that it could be. And I said, MS, and he said, Yes. Wow. He said, I ate my words when I saw your MRI. Because when you have MS, in an MRI you can see white spots. Where the nervous system has bitten a chunk out of your myelin. So you can see that. And it's very obviously MS and not something else because of where it's located. So I was, of course, in shock, but not because I've had symptoms for 15 years, but I am in shock. So I finished my customer and I was supposed to grill steak that night. And I thought I'm in no condition. So I stopped and picked up steak dinner and went home and Lynn came home and he said, Why'd you buy steak? I thought we were gonna grill tonight. I said, I'll tell you after dinner. I'm trying to act so normal. I'll tell you after dinner. And He could tell something's wrong. I want you to tell me now. Okay, let's go sit down. So we sat down and I told him I had MS and we both cried. We both cried. I didn't know what my future held. we all know when we think of MS, we see people in wheelchairs. Mm-hmm. that's all I knew. Yeah. Yeah. So And so how long ago was that? That was 17 years ago. Wow. So I've had. Yeah. So so that's kind of another interesting part of my spiritual journey too, because well, first of all, I wasn't gonna tell anybody. And I don't know why. It doesn't make logical sense now, but I latched onto that doctor's word, suspicion. Mm-hmm. Now he's telling me my suspicion is correct. So he is saying you have MS. Right. But he didn't come out and say that. He said your suspicion. So I went, it's a suspicion. We don't know yet. Yeah. So the very next day I went on a hike with my husband that's 3,000 vertical feet. It's a huge hike up in Big Cottonwood Canyon up to Mount Raymond. Mm-hmm. Because I had to prove something to myself. And it actually took me so long that it started to get dark before I could go all the way to the top. So the next day was Sunday and I thought it it's hard for me. Here I am talking to you, telling you guys, it's really hard for me to keep stuff inside. Yeah. It it obviously it helps me to tell someone what I'm dealing with. Yeah. And sometimes I don't tell someone until I get through it, but I almost always end up telling someone about it. 'Cause we're here together. We can help each other. Mm-hmm. And so I decided to go over and tell Heather about the MS. Mm-hmm. And I don't know why I wasn't like worried I needed support. And it's not like I was looking for my daughter's support. I just needed to have her know. Yeah. And they were great. They just sat there and listened and I felt so supported. I felt so loved. They didn't get all emotional. Probably autism helps that. Yeah, probably. It just stays and I don't know if it was the next day, but certainly that week, Heather had already bought the book, MS for Dummies. Of course. She read the whole thing and underlined what she knew I would want to know. Wow. Because she knew that I wasn't the one that loved research. She loved research. That was easy for her. She loves reading too. And so she gave me the book and I read the highlights and we talked about it. And she was just a wonderful, wonderful support. And it wasn't much long after I was diagnosed that the doctor said there is an injection, a medication that you can inject into your body daily that can help stop the attacks, the progression. Okay. And I said, Okay, I want to start. And he goes, Don't you want to wait six months just to be sure? And I said, Absolutely not. It's expensive. We're gonna waste a lot of money if it's not MS or if we don't need it. Yeah. But Do I wanna get more symptoms over the next six months? No. And that was scary. I had to learn how to give myself a shot. And I gave myself a shot every single day for about eight years and then they came out with a double dose. So I did it every three days a week. So I did that until three years ago. When you get older, there are some benefits, I guess you could say. So when you get older, your immune system isn't as robust. Yeah. So I was doing so well and I get a MRI every year and it shows no new lesions, no active lesions. So it means that my MS is not progressing. And I was very nervous about this, but he said your immune system is not as robust because you're older, plush You're so stable. I think it's time to get off the medicine and see how you do. And I went, Great, because guess what? I'm running out of spots where I can give myself a shot. Because you have to put it in adipost tissue, body fat. And I didn't have a lot of body fat. And I gave myself my shot so I couldn't reach. Yes. Like behind my arm. yeah, that'd be hard. And my body has a reaction to it where it sort of dissolves the fat. So pretty soon there's no fat in that spot again. wow. So you can't give a shot there anymore. So I'm like, where can I give a shot here? So anyway, three years, it's been three years. I've been off the medication for three years. No new lesions, no active lesions. The way I monitor it is I rest. I rested for forty-five minutes before I came to do this podcast and I fell asleep. I love it when I fall asleep. And I will go home and rest after I do this podcast and before I cook dinner for my husband because I want to be good company. Yeah. And if I get home too late, then he will make his own dinner and I will just rest. So I'm like that hairdryer. I overheat, I get really tired, and I must rest. And as soon as I get up from a rest, I'm raring to go again. Yeah. So I rest at least one long time a day around six o'clock. But quite often it's like a rest for an hour at eleven and a rest. And then I I'm not able to do exercise six days a week anymore. So I walk six miles a week. So Saturday, Sunday and like a day during the week. And then I do weights for like thirty, forty minutes, two days a week. But if I try and do more than that, I can do it. Yeah. I can go on a hike and I do, but I'm gonna be really tired for a few days and I'm not gonna have enough energy to come and do a podcast, that's for sure. So that's how I monitor it. And I just same way I monitor my spiritual connection. Yeah. I monitor my MS symptoms so that it doesn't block my spiritual connection. So I keep my body feeling as good as I can, and I've learned that. I am when I'm resting, I'm still the same person that owned my own business, that taught aerobics, that g gave talks to medical students. I'm still that person. I'm just doing something different right now. Yeah. So I do my best. I'm not perfect and it's not easy just because I'm talking about it. Yeah. I do my best to not let my health drag down. My experience of myself, my opinion of myself. But it's not easy. It is not easy because when fatigue hits, you don't even think the words. You don't even think the negative words. You just feel the negative feeling like, life is this all there is. And I'm not achieving anything. You don't say the words, but the feeling of I'm not achieving enough. I'm not doing enough. I'm behind on my chores. I'm overwhelmed. My whole life is just doing laundry and cooking dinner and getting groceries and exercise. And it's just really easy to let our health dictate how we feel. It's true. So I rely very heavily on a higher power and looking for those positive thoughts and feelings and Yeah. People. Well, they're so intertwined. Your physical health and your spiritual and all of that. And I was thinking when you were talking, I wonder having watched everything that your children have been through, if that was inspiring to you as you go through your health things and what Logan, both of them, no matter how Amazing they are when they get up and give a talk, and you see Logan's art and you say, my gosh, look what he's doing. And you read Heather's writing, which is so inspiring, and you say, Wow, look what she's doing. It's very hard to remember that they're both suffering from the moment they wake up till the moment they go to bed. They are suffering. And they are looking for better feeling thoughts all the time, just like me. Mm-hmm. And Logan, I love to say to Logan, so how do you do it? How do you get through the day? And he'd be a great interview on this podcast. I would love that. And he said, Food, shelter, water. Do I have food, shelter, water? He has food, shelter, water. And he knows he's gotten through something harder. Yeah. So we draw on our strength of knowing that we got through something even harder than what we're going through now. So by me watching them, because they both live in their own apartments, people assume they live with me. In fact, his hearing specialist assumed that he lived with me because I go with him to his appointment. But Logan's lived alone on his own since he was 18 years old and he's forty six now. Wow. And it's a struggle. Mm-hmm. And you guys can't appreciate that unless you see the pictures. Yes. And which I will put see what they look like, which Ali will put on. Yes. Because imagine making your bed with just a pincer movement that isn't very strong like this. Making your bed, making your food, and that's it. That's all you have. Mm-hmm. Because their fingers are permanently bent. and Heather she's fine during the day. She'd get lonely at night, but she'd watch Superman. She'd buy what she needed to buy series that she loved that she could feel positive about. And you know, just always finding an easier way. So I watch them and I go, geez, they did it. Heather did it. Logan's doing it now. Of course I can do it. I can do it. Yeah. And I look at other people that I see out there doing it that have challenges. If they can do it, I can do it. Yep. Yeah. That's why it's so important that we share. Yeah. Like what you're doing. Yeah, that's why I do love to share because I don't want to feel like I've gone through all of this for nothing. Right. Now intellectually I know it's not for nothing and spiritually I know it's not for nothing, but Emotionally it can feel like it's for nothing. But if I share it and if it helps your life, I feel satisfaction. I feel purpose and I feel meaning. And so does Heather and Logan. Mm. Yeah. Thank you. Thank you for sharing. okay. So the next question is about the MRI, So during your MRI you pictured yourself as an angel with healing power and called on loved ones in spirit. can you share that practice with the listeners? So I've Drawn on other people's experiences of meditation and envisioning help. And I've drawn on that for myself. So especially when I first started getting MRIs and when I was first diagnosed, So I would picture myself. as my higher self or my inner being, my soul, you know, my spirit. So that stronger Powerful part of me exists. So I love to play with photos. So I took a picture of me and I put angel wings on me and I found a magic wand. And then I found a picture of an MRI machine and I put myself in the picture next to the MRI machine. So when I was in the MRI machine, I would envision that spiritual power. healing my body and as I heard the sounds from the MRI, I imagined they were actually like shooting healing power into my body. And I have a meditation that I do in the MRI or at home when I'm resting. Cause I mean when I don't feel like resting, it's like taking a three-year-old and saying, Time for a nap. Yeah. It's like I don't want to go take a nap. But you know that you don't feel good right now and you're not happy with anything you do unless you go take a nap. Yep. So it's hard. So I'll lay down and I don't do this every time. I have lots of different things I do. So I lay down and I picture every person every loved one that's in spirit. So my aunts and uncles, my grandparents, my nephew a CF, now Heather. And they circle around my body. And I see their faces and they're all smiling. And they all take their hands and they flatten out their hands. And they put them under my body like a spatula. And they're all the way around me. So they put their hands under my body. And then they slowly back away, carrying my body away to the other realm to heal it. And it's amazing because it feels so real. Yeah. And when I was getting a massage once Just after I was diagnosed, and I was laying there with my face in the pillow and I was saying, Brandon, my nephew, I was saying the names of every one of my relatives, and I got to my Aunt Minnie, and I just had this whoosh. And I said, She's here. I felt her. I felt her. And I'd never had this kind of Wait, maybe I had with Brandon. That's a whole story. So I felt my Aunt Minnie. And my mom is my Aunt Minnie's sister, and my mom has a lot of psychological and physical problems. So I thought, maybe Aunt Minnie is here to get my mom. Mm-hmm. So I had a customer at the time who was very LDS, but it didn't matter because we would talk spiritual stuff and we just loved it. Mm-hmm. And for some reason I called her and I said, I have to tell you what just happened because I know that if something happens, if my mom dies, or if something happens, I'm not gonna believe that this was real. So I told her my Aunt Minnie was there. Two weeks later, my uncle Willis called me up. He was married to my Aunt Minnie, and he said, My son Tom passed away today. I know they are here with us. They are here with us. And those are the kinds of experience. I know that we say, I can't believe it. Mm-hmm. I can't believe this happened. Mm-hmm. But the truth is we experienced it, so we can't deny it either. Yeah. Once you experience it, you can't deny it. So if you're just open to it, it's that little space that something can happen and you can go, maybe. Mm-hmm. And be open to it, even if you feel like you can't believe it, and then it happens again. And you go, Whoa, that's twice. Mm-hmm. Yeah. So that's what's helped me in these meditations is having that experience. And other experiences with actual direct spiritual experiences that are impossible to not know. They are true. Yeah. For me, they are true. Yeah. thank you for sharing that. That's powerful. thank you. Okay. so when you told Heather about the MS, she already knew the path you'd walk And what was it like for you to be comforted by your daughter in that way and talk about the point where you had to surrender and what that means to you. It was really wonderful to share my MS diagnosis with Heather because she's lived a whole life of disabilities. So for her, it's not a fully abled body hearing that her mom's gonna have disabilities. It's someone who understands disabilities, who's lived with disabilities, who's accepted her disabilities. And Surrendered to her limitations not easily. I always like to say that because when you hear me or someone else sharing as if we've got it down, no, I don't have it down. Yeah. So sharing with Heather, it felt really good to have her understand. And be compassionate and want to find out more information, and she knew well enough to not give me too much to swallow at once, just little by little. And it just felt so good because usually I'm taking care of her. Yeah. And now she was taking care of me in that moment. She was. Giving me information that she believed would help me not be so afraid. Mm-hmm. And I'd spent a lifetime trying to help Heather and Logan not be so afraid. Yeah. So it was remarkable. Yeah. When your child is an adult. Mm-hmm. And you're in a situation where they're being a friend, an adult friend that's there to support you, that doesn't need anything from you at that moment. Mm-hmm. Yeah. And so she was giving that to me. Yeah. And when I was diagnosed and I grabbed onto the doctor's word, your suspicions. And I twisted that in my perception to say, it's only a suspicion. So even after I had talked to Heather about it, I was still honing this delusion that it was only a suspicion. Yeah. So I was driving to work, talking out loud to source, saying, I am Absolutely clear. I do not want MS. I know I'll learn a lot of lessons from having it, but I'm telling you, I'm very clear about this. I don't want to learn the lessons. I don't want it. I don't want it. So if I can create a miracle, if you can create a miracle with me based on my intention being Really clear, that's what I want. So I said, but if There's no way out of this, and my soul wants to learn the lessons from having this challenge, this disease, these physical limitations. Okay, I will handle it just like I've handled everything else. Wow. I surrender. Yeah. Yeah. And sometimes when I'm really fatigued and You know, there's dishes, there's exercise and all I wanna do is play on the computer and edit photos, I surrender. Mm-hmm. I say, if I feel more positive doing this today, this is what I'm gonna do. No one's coming to my house. Mm-hmm. There's no reason that I have to have it done. It's a self imposed demand. Yeah. Yeah. Surrender. Surrender. It's powerful. You should try it. I mean It's it's wonderful. Surrender to grief. Yes. Surrender to crankiness. Yeah. Surrender. Just surrender. Whatever is so powerful that you're feeling a ton of resistance to it, surrender. Mm-hmm. It And it looks different for everyone. Surrendering. yeah. Yeah, I've been there for sure. Sometimes you have to go there. It's almost like there's no other place to go. Yeah. So that's true. You're right. I surrender, but it's in those moments of surrender that I've found is when you get to that point where there's nothing else but to surrender and ask source for help or your angels or whatever. it seems like that's when the miracles kind of start coming because I agree. Yeah. I agree, Ali That's really good insight. Yeah. 'Cause space. Create space. Yeah. When you surrender, you're not fighting anymore, so you're actually listening. Yes, exactly. Exactly. Yep, that's where you're going back to here. Yeah. Yeah. Thank you for being here for the first part of Debbie's story. We're going to pause here because what comes next needs its own space. In part two, Debbie. shares Heather's final chapter, and what Heather's words choose love mean to her now. Take a breath with what you heard today, and I'll meet you back here for part two.