Emily Otteni : Losing a child to one of the rarest disease in the world (Harlequin Ichthyosis)

A young couple learned their child will be born with a debilitating medical condition. You know, you're going through something so traumatic that you just don't believe it. That was a lot of, you know, fear, and I know people do not agree, you know, with that. Hi everyone and welcome back to the Good Quest. I am so honored today to be drawing by Emily Ottney. She's a master, tycoon-going instructor, an elementary teacher, a mother, and a writer at heart. Her journey includes profound love, unimaginable loss, and a deep commitment to healing, not just for herself but for others walking similar paths. Emily, welcome to Good Quest. I am beyond honored to have you today. Thank you for having me too. I'm really excited to, you know, share my journey with you guys, and hopefully someone can take something that I say and really take it to heart, help them through their grief journey as they're working during their lives. Before we dive in, I just want to say thank you so much for trusting this place with your story today. I know it's not an easy one to tell, and I'm beyond honored to have this conversation with you. And so I want to start somewhere very simple. I'd love for people to do to meet you. I have a side of titles, responsibilities, and kind of everything life has asked of you. Who is Emily? I break that down, I really feel. I grew up very fast. I always wanted to help others and support others, so as I was going through school or, you know, joining Taekwondo, I navigated to really just helping others learn and finding any way to support them. And I feel like I have carried that with me through every aspect, no matter what that title may be. It's just something that has become a part of who I am. Thank you so much for sharing that. I think when people hear a story like yours, they often skip straight to the hardest chapters, and they forget that there's a whole human underneath all of it, right? On a normal day, when things are calm, when you have some time for yourself, the kids are playing, what brings you peace, what builds your cup? Eating. And nowadays, it is reading, it is diving into a world that is full of creativity and learning how I can connect to the characters and really feeling. You know, that I can help myself through my feelings, through the things I've been through the stories that I read, and that's why I like to also dabble in trying to do some creative writing as well. So I think those things really make me feel grounded, and it gives you a chance to be reflective, even though you're, you know, reading someone else's work. But it really helps me feel grounded in who I am. Is there a recent book you enjoyed reading that's you like to share? Well, I love fantasy, and one of the books I should say in our series that I'm sure a lot of people have read is a quarter of winter roses. But that's actually what me really fall in love with reading and found it as a place to really ground myself. It's something that I actually dedicated a tattoo to, which I don't know if you can't see. Yes, it's the tarot card, the star. I got it when I was 30 years old, and to me, it symbolized anything can be possible with the star, and that really came from those stories and journeys, and seeing what others have been through. That were obviously not the same journey, but in these stories, they're going through grief and trauma, and how do they move on during those times. For me, that really felt special, and so that's something that I dedicated myself to, you know, continue my path with. And you mentioned your writer, what type of stories do you use as a writer? I've been trying to write some short stories just to get my brain rolling. Again, this is something I love to say that your choice can evolve, because I was never a writer, I was never a reader. I'm trying to get more into fantasy, but getting some representation of what I'm going through, so that I can, you know, hopefully the long-term goal eventually share that maybe on a small scale, whatever that may be, you know, things like this so that other people can, you know, feel that connection that I felt when I was reading stories. It's amazing, and you're an incredible mom, plus you're a master type-on-doing instructor, and I think that level of discipline, it just shapes more than your body, right? It shapes how you move through life, it teaches patience, control, and just presence overall, how to stay grounded. What do you think type-on-do taught you by yourself before life eventually kind of asked for more from you? Whether or not I was realizing it, since I started around nine years old, I started teaching when I was around 12. I think that it truly showed me that, you know, you could do anything, and that the world can see you, the way that you want to present yourself. I became a role model very young, and so as my roles and my names have changed, I still run into people years later that know me as Miss Watts. And they share the journey that I did for them, even if it was a short amount of time, and it really showed me the love that you can spread, and how you can reach so many people. And I don't think you understand the impact of that when you're younger, you reap the benefits as you grow up, and you get to experience those interactions. And so I feel like that really showed me what it means to be a role model, you know, work towards goals that you probably already been realizing you're doing, and you know, impact. That's the big piece. And then eventually life kind of shifted, everything changed for you. So you were in your early 20s, life was unfolding in a way that felt very hopeful to engage building a future, imagining what came next, and you had your very first child miles. He was born, and then you introduced something called, and correct me from wrong, Arlequin etiosis, not through research, really through your child. Could you explain what that is for anyone maybe hearing of this for the very first time? So it is a skin condition that is very rare in itself, the type of it is. Ethiosis has many different forms, and it can be very mild or very extreme. And with Arlequin etiosis, I think we're working towards 200 kids worldwide that have no certain form of it. And when these children are born, they are missing a, it's a protein that's connected to a gene. And basically if you have two missing genes, they have one working one, one that is not working, and so does my husband, and he are miles just got, you know, two that we're not working. And when it presents, they are born with very thick platelets of skin. That protein affects their outer layers, so as they are growing, and they are, you know, exposed to the air, they get very tight, and it squeezes on them. So these kids can have troubles with extremities if the skin is not, you know, taken care of. That's why a humidified islet truly saves lives. That's the fascinate, you know, that keeps the humidification inside for them. And so he spent two months in the NICU getting off that first layer of skin. And at, you know, the rest of his life has been a constant fear of infection, because if his skin gets too tight, they create cracks, which are also painful, but he can get infections within his skin. There have been children that get these infections, and it becomes very serious very quickly, and they end up in the hospital can become a blood infection. When he was four months old, he had an infection in his arm that ended up being a nursing infection. That was just from a very small cut, and it can get in there. And so it's something that can be very severe, which is why the mortality rate, I believe, is about 50%. There are not many people around the world that are living long lives with this, but it's not because they can't. It's just that medicine has finally caught up. So people that are older with this condition are only in the late 30s, like a little older than me, but that is not because they can't live a full, complete life. It's just that, you know, now we're catching up to support them. So it's something that we live in constant fear all the time. It can affect their eyesight, how they can even drink a bottle when he was little, you know, because his skin was so tight. There's growth in his ears, so he has bilateral hearing loss, and we have to keep up with that. So it's very complex, and it's something that, you know, we navigated as new parents, first time parents. It was very, you know, surprising. And it's, I love the 2020, our, you know, hindsight, you know, we say as there were actual clues while I was pregnant that we just weren't aware of, and then after the fact we sat down and we talked with doctors and we have the most wonderful dermatologist who has taken care of him. Since birth, who has been absolutely amazing and has navigated all of this, so it's a very complex condition. It has to be taken very seriously. I have become that advocate at every step of the way. I don't know if you're comfortable sharing, but you mentioned there are a couple of signs. So when we were at the anatomy scan, so halfway through, they said there was a lot of thickening around his neck, typically that can be associated with Down syndrome. And we didn't really know what was going on, but there weren't any other markers of Down syndrome. So they were just like just a little thicketing. We're not quite sure what that means kind of thing. And then I ended up having my placenta tearing from the wall. And so I ended up at the hospital for three days that eventually put me on better. and then they were doing a lot of ultrasounds. They saw a lot of debris, which was his skin, actually starting to come off from his body, and they just didn't make that connection, that that's what it is. They're like, "Oh, it's really hard to see in here. I'm like, I don't know what to tell you." When I was in labor, we have straps that go on your belly and that it's registering the baby's heart rate, and it wasn't registering while they're like, "Oh, we'll do an internal one that basically goes "and is supposed to almost stick like a sticker to their head, "and they couldn't get it to stick because of his skin." And they didn't realize that, and they just kept telling me, "This must be faulty," and then they just kind of like strapped me tighter to make sure I could get his heart rate. So all those things together was, "Oh, that makes sense now." But it was just very interesting to go back and also kind of become their case study to support future case to support children that come into the world. - Yeah, I mean, around 200 kids, right? - I don't know the exact number. I know we're working towards that. It's not something outrageous. It's, I leave if you look at the statistics, it's one in 500,000. - Wow, it's really rare, yeah. And you mentioned Miles means little soldier, name, carries, intention, always, right? On one point of your life, did you realize you were becoming soldiers right enough to type away? - Honestly, when he was born, we were between two names, Emerson or Miles. I even tell you what Emerson means anymore because names and meanings always meant something to me and I held him once they allowed me to and I looked at him and I'm crying and I said, "You are Miles because your mommy's little soldier "and you're gonna do this. "We're gonna do this together." I said that to him, he's been alive for five minutes and that was that moment. - You know, those become the teaching moments that are implemented in our lives. There's so many things over the years with him that I don't remember, but they're just those intentional pieces of time that I cannot erase and that was the moment for me that everything changed. - So Miles ended up spending his very first months the NICU and during those times, parents are faced the most difficult decisions they ever expect to make. - I want to ask, when there are no clear answers, especially for something like highly connectiosis, you can only give responsibility and love, right? How did you find a strength to keep going for you and your husband? - You just had to have a lot of trust. There were a lot of decisions we had to make that first time parents let alone, if they're six time parents still have to make, you know, his third day of life, I'm signing paperwork that says he can get a drug that technically is an FDA approved for an infant, but they've been sitting in the past for other children with this condition to help him. And I said, whatever we feel as best, if you feel as best, it was wonderful that we had our dermatologist, he guided us through things and helped us really make the best decision for him. But for me, I would say that was the time where I struggled the most because I was taking care of myself. Unfortunately for us, we lived too close to the children's hospital, so we did not qualify for their in-housing and we were too close. So I lived there. My husband would go home and take care of the dog and I slept there for two months until I got very, very sick and had to take time to myself. So for me, I feel like finding strength was probably an unhealthy coping mechanism. So writing every detail down, asking a million questions, never leaving a side, but to me being close to him meant that this was real and that I could be his advocate and ask the right questions and be inquisitive and learn because I knew that going on throughout his life, even from the beginning portion, that I wanted to be the most educated person in the room when they would ask me questions. I wanted to be the person that could give them the correct answers and by the end of his NICU, say I really was, you know, nurses change every day, the doctors are rotating, let's come in and out, but I was the one that could give any detail that they needed and you know, support them of what this condition even is. You know, as a teaching hospital, it's great that we have so many people come in and out and support him, but I always felt that sometimes you know, they would go, oh, I had to look this up beforehand. Like I kind of hope, I kind of hope in the future, you don't say that as you're walking in the room to take care of their child. But I also said as many as you want because this may be the only time that they witness a child with this condition. And so, you know, trying to be open to those conversations and then making sure that I was knowledgeable was the things that gave me strength, whether or not I did it in the correct way to take care of myself, but you know, when you become a mother, it's just automatic. They're first, you're second. - Were you fearful about anything? Like I know you mentioned that they would just come in and say, I have to look this up, but was there anything else? - I mean, just in general, there was one time, only though did I feel that he was not going to make it, was a day where oxygen just dropped. He wasn't breathing. It was very late at night. If you can imagine, it's very, very quiet and all of a sudden there's almost like 20, 30 people on a small hospital room trying to take care of you. You have the counselor next to you, basically trying to relax you because I thought in her mind, he was dying and this was it. And, you know, that was the only time that I allowed myself though to say that that was the end. And he stabilized and he was fine within 20 minutes. So everything, you know, worked out in that sense, but I didn't let myself think about his mortality and I still can't do that even though after everything I've been through because then that's all you'll think about. You cannot make decisions based in fear, kind of life to live. And especially in my case, I'm his decision maker within so young and I need to teach him how to not make decisions in fear so that he can fulfill his life, whether that be to 15, to 20, to 60, to 80, to 100, he should be making the decisions to live that fulfill life. And after everything, he had experience with miles and this also being your very first experience to motherhood, you learned about heart-liquenic theosis, navigating NICU and just taking care of a child with complex medical needs. You end up finding out just your pregnant again. And before we talk about what happened, what were you feeling during that pregnancy, during that second pregnancy? - That was a lot of, you know, fear. And I believe from everything I've went to, I don't think I've ever gotten to really enjoy a pregnancy. You know that excitement because there's always that, okay, what is the unknown and what's going to happen? Especially with Holden, he was my surprise. We were not planning to have another child yet. And we were working to the steps to speak with a fertility specialist because as we saw miles start growing and navigating, we didn't want to have to have another child go through this pain and we just knew that was best for our family. And there's, it's a big unknown because it's unfortunately math, probability. So when you have a recessive condition, it's for that of four. So 25% chance they'll have the condition. 25% chance on the other side, they're completely unaffected. And then 50% chance they're a carrier like myself and my husband. So they're not affected by it, but you know, in the future they could pass it on. And so you're sitting there going, okay, what's going to happen, what's going to happen? We knew that, you know, we would carry this baby and we would love this baby and do no matter what for them. So when we spoke with a doctor, we said, we want to get the testing so that we can be prepared not to make a termination decision, but so that we can prepare doctors, we can prepare ourselves and we can get everything ready to support the child the best way we can. We went into our anatomy skin and that's when they saw some of the same markers and the thickening of the skin. And she even said to me, I usually would say down syndrome, but you have the background of the clinic theosis and then they asked us for the amniocentesis. That's when you get a giant needle, stick it into your belly to reach on the amniotic fluid and we decided to do that. There were risks of that as well, but we decided that, you know, it was better to know and prepare than not. And so it was around December because this was in the middle of COVID. I was teaching first grade online and I got a phone call in the middle of the day and I remember speaking to the nurse, the doctor, whoever may have been and she was like, [BLANK_AUDIO] to get your husband. Do you want to sit down?" And they said, "You can just tell me that he has it." Like I know. I know. And she goes, "Yes, he does carry, you know, both of the, you know, jeans and he will have the condition." And so it's something I think before that phone call I had already accepted. There is something sometimes you just have that intuition and you just, regardless, there was just something the whole time that I felt that he has it. And then there's beauty of turning that, you know, we say into strength, but also you imagine what your life is going to be like. And the thing I said to myself is, "He has a teammate. He has someone who's going to go through life with him that understands everything. It's going through." You know, I can do whatever I want to support Miles, but I'm never going to understand completely. But what a magical and beautiful thing he's going to have. You know, their brothers, they're going to help they help each other. They're going to always be there for each other throughout life. And I can't only imagine what it's like to hear the same diagnosis again. And to love so deeply while also knowing how much strength it's going to require for a second time. And having gone through the Niki once, Miles did Holden's bird feel different, whether mentally or emotionally. Eventually I felt a lot calmer. I wasn't in a much better place. I will say Miles came a month early and Holden came two months early. That's because of their condition. So I got a little more nervous because I believe we were at 31 weeks with Holden. And so, you know, the farther you go, the better it will be for them. But that just becomes kind of typical with these children with this condition. So when he was born, I kind of was just, okay, like everything's going to be fine. We'll figure this out. He, though, was unfortunately turned. So I ended up having an emergency c-section. Him on top of everything else. And so, he came out and I just heard him cry. I got to see him. I didn't get to hold him because, you know, I'm stuck on a table. My husband got to. And that was a little bit different for me that I got to relax a little bit because we had a plan. My husband followed him to the children's hospital because I gave birth at a different hospital. And that was the plan. He would make sure that I was informed of what was going on at every step of the way. And I would say with miles, that was very lonely and debilitating because I was alone at a different hospital. My husband jumps in a vehicle and goes. And then I eventually break out as I broke out early as well. Because again, we say we take care of ourselves second. And I typically, you're supposed to, I want to say it was like three days or something. You're supposed to stay in the hospital with a C section. And I got out in like a day and a half. I was like see you later and convinced them that I could go. And then I just kind of like laid in a chair in his hospital bed or hospital room, I should say, for the rest of the time, or vividly having a conversation with my best friend, what I called her. And I said, I don't know what's going on. I don't know much about this condition. And I don't want him to suffer. So I hope that if he has to go, he goes. He doesn't stay and you know, feel that struggle to grow. It was something that I sat with and said, even though it will destroy me, it would make me feel better for him. Because at the time, I really don't know what's going on, you know, and everything. And to see how strong he was, as we went through the days, you know, that obviously changed in my mindset. But I needed to have peace of whatever the outcome was in that loneliness. My great aunt was with me and my mom was with me to support me to, you know, take care of me until I could get to him in that first pregnancy. But I needed to feel okay was what any outcome would be. And when I say, okay, I do not mean that I am okay with a child's death, but that you find peace in that whatever will be will be, and that will be okay, you know. And the second time my mother was with me as well. And I was more probably comic-clected. She thought I was crazy. I, again, was teaching online. I had my substitute message me to, you know, congratulate me whatever have you. But she was locked out of everything. And I thought I had done everything in advance. So I actually was out of surgery for like 45 minutes on my computer, just like unlocking. And my mom's sitting there like, you are absolutely crazy. But I was just like, no, my kids come first, just like students come first, like it will be fine. Like I'm not doing anything. I'm laying in this bed and I can't move. Like my son already left to go to the hospital. So I think it was a lot more relaxed. You know, you went from caring to one child with high medical needs to caring for two, with high medical needs. I don't think that something most people can even picture. I want to ask during those early days at home, what did it look like for you, your family, your kids? It's definitely an adjustment because there's a lot of logistics with my kids. So support the skin growing extremely fast to keep up with itself. They have to be in a bath for a very long time. And you kind of rub off the extra skin because the more extra skin is on there, harder it is, you know, then it will become harder. And then there's, you know, higher risk for infections, things like that. So as we were navigating home life, we were, you know, making schedules, trying to figure out with their medications, what time should they have? What's the best for bath time? Should they do this together? Should we do this one on one? And you know, my old is not even talking. Like, you know, he's very young. He's one and a half. And he wasn't walking yet. He did the butt scoot across the floor. So it was just a lot of teamwork. And we were fortunate that my husband was able to, you know, do some things from home. He was teaching as well. I believe that year from home. So we were both just physically always here. And I was able at sometimes to, you know, support students while, you know, he's laying next to me in the bath tonight and things like that eventually when I got back to work. And so he could, you know, start at their daycare that they went to. So just a lot of thinking as you have to do. And just overall a lot of trust, right, to whatever decisions you have to make, hoping that it works out. And you're getting used to this life that you had, you know, learning, surviving, loving. And then eventually I kind of came this really big moment in your life. On June 20, 2021, you and your husband face something unimaginable. Can you walk us through what happened that day? Everything happened very early. I was sleeping upstairs. My husband was downstairs withholding. We had a bassinet downstairs as well. He was just very cranky throughout the night. And he said, I'll let you get some sleep. You know, I'll go sleep on the couch kind of thing. I remember the scream. It's something that, you know, things sit with you. It's very vivid. My husband's screaming for me that he is not breathing. He immediately calls 911. I am running downstairs holding him. And I had already, you know, validity had already said in. I could tell. Yet, you know, you're going through something so traumatic that you just don't believe it in the back of your head. And so I did perform CPR on him when they got there, which was in a few minutes. The EMS team came in immediately touched him and they said, you know, that he was gone. And that's when you hear it from somebody else, you know, that it kind of like sits better with you. And I held him for a very long time. There were many police officers in our home. It was very, you know, dark time. Unfortunately, for timing, it was Father's day that this actually. So for my husband, I think it's something that carries with him a little bit, you know, that it was on that day. I just happen to be. Everyone involved that day was very, very supportive and helpful. They let us have that kind of prolonged goodbye. They allow family members to come. And I remember that EMS woman, she looked at me and said, I want you to know he's not going to be alone. They took him and she's like, I'm going to sit with him, you know, and wherever they, you know, before, you know, the autopsy and everything, you know. And she just made sure that I understood that, you know, every step of the way someone's going to be with him to be present. And you know, that really sat with me, you know, that I could not be there anymore. So what do I do? And A family came immediately. It's one of those things where you truly see who really loves you and cares for you. So many friends, so much family, so much love, you know, an outpour of how can I support you during that time. And I think that people didn't know how to handle me because as we went through and navigated the funeral and everything that we did, I was probably the most happy. I had been in a very long time during his viewing because he was born during COVID. And that was the first time I got to introduce so many people to his life. And it was here. This is what he got to experience. This is his journey. And we had so many pictures. And one of the things they do in the Children's Hospital, I still have it. We have one for miles, too, is they have different beads. It's kind of like their beads of hope as they go through Children's Hospital. And every time they, you know, do a procedure or get a medication, different things, each bead stands for something else. So I got to show them, you know, what he went through, what he got to experience. And just that he was here to love almost four months of life. And I don't think I truly broke down until his actual funeral with everything. But I did get to see so many people of the past, too, that you know, have not, you know, reached out and seen me or and just said, Hey, I'm here for you. Like, no point today. I ever feel alone. Thank you so much for the courage and the bravery for opening up so intimately about that journey. I remember reading about your journey, but to hear the actual story, it behind it feels very different. So thank you for being so open. And I wanted to talk a little bit about grief. There's this conception and society I feel in which people often say things like, Oh, you'll move on or with time it heals. But for someone as yourself who has gone through the grieving process and maybe even going through it right now, what does grief look like for you in your day to day life? So it is never something that leaves you. It is something that changes with time. But it can revert back to the date happened at any moment. So the best analogy I have read and explained to people is that you need to pretend that there's a room and there's a bouncing ball bouncing off the walls, but not on the wall. And that is grief. And when the grief happens, when that loss happens, that ball is huge. And so as it's bouncing against the walls, it's always going to hit that ball always. And when it hits it, it feels like it's the day of. It feels like you are being pulled apart all over again. But as the years go by, the ball gets smaller. So it's going to continue to bounce. The button is still there. And it's still going to hit it. You never know when it's going to hit it, but it's still going to, because the button never goes away. And I think that something that is very crucial for people who have not experienced loss or maybe they don't experience loss much later until later on in life is that I carry him with me in everything that I do. And when that button hits, it doesn't mean it's debilitating. It could take me back to that place, but I also might feel it and joy. I feel it, you know, in that happiness of that he was here. And I think of all the great times around the holidays is a crucial time. It usually does hit the wall, hits the button, and I stayed up, and I cried. But it was crying of joy. And I'm smiling because we have this, an album that we share and we collected all his photos together. And I praise for Apple for making live photos so that you can hold and experience moments in time. And I was so happy. Now up into that point, I did, I made a recent post that said, you know, I felt very disassociated with the holidays, and I felt, you know, very just separated. That was the word I used. But sometimes you need to have the button hit to feel it to such a beautiful feeling because it's not about loss. It's about love. It is about all the love that you could not share with them while they were here, present with you. So every time you hit that button, I love whether that sadness or whether that comes out in joy, it's all the time that you didn't get to tell them. I love you. Is there something you think people misunderstand about grief? I think that people think you'll get over it. Yeah. You know, I am fortunate that I had such beautiful friends that allowed me to go back to Taekwondo and let me work. You've no, you didn't want me to. And I gave them two numbers. I always said the first number I give you is the amount of grief I'm feeling. And the second number is the coping I have today. So I have a high grief day and a high coping day. And I could be pretty good, you know, for the time. But, you know, things can be reversed. I could have high grief and low coping. And then it's a terrible day. I could have low grief, but also low coping. And still might not be a good day, you know. And that was their way of understanding how to interact with me, how to support me. And all I had to say was seven and two. And I think what's important is to have people like that in your corner. You can explain this to and say, I know that you probably don't know what to say to me. But this is where I'm at and I need you to meet me where I am. And I haven't used that scale in a long time. But if it's like a really bad day, I'll talk about it again. But it's never something you get over. So I truly feel terrible when I see people share their journey online. And you or hear stories about people were just like, I cannot deal with you. You know, sharing your grief anymore or seeing everybody down and things like that. And I just can't imagine what that person is feeling when they hear that. And I know it's always from someone who has not been through it. But grief is not exclusive. The moment you decide to love someone or something, they're going to hurt you. And it does not mean in a negative way. It is eventually they will be gone. It's very easy to explain that to kids with pets. Right? I'm not here for a very long time. But the moment you choose to bring them into your home and love them, there's going to be a day when they are gone. And then you're going to feel that grief. And I hope that when that day comes to the people that feel that way and spread that, that they have that support system that I had when I went through it. Just like in our society, right? I think we often avoid conversations about grief and loss. But when that's the case, it can be hard for someone to know how to help someone who is grieving. We'll learn how to talk about it. What can someone do to help someone that is grieving? And for anyone who may be going through it right now, what would you like to tell them? Through people, you can do is not say I'm sorry for your loss and move on. I think as a society, the best thing you can say to someone is tell me about them because you want to honor the person that is gone. And yes, we can connect on some level to say I'm sorry with emotion. But just to look at someone and say, tell me about them. Because I usually think in the back of the mind how many more times in their life are they going to get to do that? I find a way to sneak hold in into conversation almost every day because he again is with me in every way that I present myself and I handle situations and I work with my students. So I want them to feel safe and comfortable to share emotions. And when it comes to someone going through grief, don't let someone else's grief be your blueprint and be or make you feel like a failure because you do not emulate the same way. Something that I explained when it happened was I identified as a high-functioning grief person. I did not have a job. I was in between long-term subbing positions and so the year's done. Time for you know the job search and I went to interviews. And I even told some of those teachers and administrators and I introduced myself and I said I don't want to be here. But I said I'd rather be transparent and honest. I'd rather you let me understand where I'm coming from but also acknowledge that I can be an amazing teacher for yourself. students. Part of me also wanted to share it because if I didn't, I didn't want to work for a school district who wasn't going to support me because fortunately it's not just a checkbox that can happen again, right? So it was a very different summer for me where I had to really navigate and be professional and I did, you know, get a job. And I even accepted a job and turned down to go to a different job. So I was offered multiple positions even though I very was blankly. I don't want to be here right now but this is why but you know I love what I do. So give me, I hope you can give me the opportunity to show you that. But other people who judge a grieving person who can't get out of bed the next day or weeks or months and lose their job and things like that because that is their grief experience. It does not mean they didn't have the same support that I did. They went through something less or worse because I don't agree on comparing grace. I just feel that as a society we would look at that person and say, you know, get over it and we need to figure this out, we need to live your life. It does not mean that they are any less in that experience. And I feel like as a society we look at someone and see that that if you can contribute right back right away and get right back to what you need to do, then you should, like you don't belong essentially in that case. And that is extremely frustrating. Our society is not built for grieving people. That's why with jobs that I go through and the people that I surround myself with, I have become an advocate for policies and things like that. And I am okay to be the person that stands up and says, I've went through this, they're going through this. What can we do to support them, you know, and as a leader as I go through my career as well because it again is not exclusive. It can happen to you at any moment in time. And a life change like a disability can happen to you right to yourself and then your whole world changes and we don't support people that way. I feel as well to the best of our ability. So it's something we have to navigate and be better as a society to meet people where they are and to support them in the right way. Thank you for sharing that. I think the conversation of grief as I mentioned doesn't always happen often. So I mean, I'm really excited for people to hear about this and just talk about grief hopefully. And so after holding eventually you and your husband made a decision to continue with IVF to go your family and most importantly to honor hold in, what did that represent for you emotionally? So I always said that going through IVF always felt like a double-edged sword that I was afraid that on one end of the sword that miles would be upset that I wouldn't allow another child to be like him, you know, because I had hold in and we lost him and he could have been that magical partner. And then on the flip side of all that the other edge is I can't let another child go through this. Another child, you know, go through such pain and then there is the selfish side of I cannot lose another child this way. And then the back of your mind, it's always still sitting there because as miles grows anything can happen. For us, you just felt like it was the best for our family and I know people do not agree, you know, with that. And the fortunate thing for us, it was not a fertility issue necessarily. I could get pregnant. It was just, you know, working through the chromosomes, you know, and figuring out, you know, the DNA of it all and the genes. And so we went through all that and it really opened my eyes to, again, become another advocate for women who are going through fertility because it was debilitating. And it was debilitating for a woman who doesn't have necessarily a fertility issue. You go through this process, you start with an egg retrieval so you get eggs and then they will go through and you know, we'll insuminate them and you know, hopefully they become an embryo and they grow. But no one really tells you the details. So you get the eggs and I started out what I want to say, like 2024 or something like that. Very high number. Everyone was very excited about this. And then when they were fertilized, it drops to 13 because not all of them were able to make it. Then you go again and only five of them made it to the, what they consider the embryotic stage that could be used for a transfer. And I just can't imagine what women go through and just hope for one. And then just to make it to that point, it doesn't mean it's going to work. You know, and so they laid out everything for us and it was very interesting to hear. We did something called a frozen embryo transfer that is because they sent them off for testing because that was our purpose. We were not going to use them depending on, you know, what their genes showed. I don't understand my life, but I've had two sons part of this and out of those five, one came back inconclusive and the rest of them were boys. And it was very interesting. Out of those four, we got, we did get her retested. I say her because we actually found out that one is a girl. So that was very exciting for me. So she's still frozen in time, as I say. But out of the four, right of the five, I should say, because one of them, obviously, we used two of them or something called high mosaic embryos that they cannot be transferred. So we are very sensitive now, again, as technology has changed. And from what I understand about it, I'm not a doctor, but as I understood it, they said that a high mosaic embryo is one that is closer to chromosomely abnormal. So you cannot transfer it because they will, you know, have those conditions that are associated with their chromosomal abnormalities. And then beforehand, it used to be abnormal, normal. And now they'd be able to put abnormal into two categories. And I guess there have been a very cool scientific discovery about, you know, implanting low mosaic embryos and these children are growing up fine without presenting their conditions. So I had two of those, one of those had ectiosis, high mosaic, and then out of the other three, two of them were a carrier, and one was unaffected. It just so happened, it was not a choice. They said that the one that formed the best was actually the one that was a boy and was unaffected. So he was not a carrier. And they felt that he would, you know, attach and, you know, develop into a normal pregnancy. And so we went through that. And I was very excited when everything worked except I went to that appointment. Once they finally you graduate from the fertility clinic after so many weeks, and I just cried, though, because there is an emotion that I, many people do not get to feel, but it is the emotion of welcoming a child after losing one. It is something it's very hard to describe. It's your mix with joy and sadness and that grief of change over time because he'll never meet Holden, even though in my spiritual sense I like to say that he kept him safe and wherever they were until he was born. I like to say that. And there was actually a time that I thought I almost lost that pregnancy. I was teaching at school and I started bleeding. I thought I was having a miscarriage. And I went to the doctor and they said everything was fine. And then I cried some more, you know, because it's just this constant battle of how do I stay calm and relax. This is supposed to be "normal pregnancy." And as we navigated and went to our anatomy scan again, they just kept telling me, "Well, he wasn't really sitting right. He wouldn't let me get all the pictures." And that's where they started talking about that piece of his brain. I just still feel like we can't see it, he's a wiggler and he was a wiggler. And so I said, "Okay, okay." And then eventually I kept having to go back. And by the third time they said, "I don't think it's that we can't see it from moving." I think that it's missing. And so that's when we had to speak with a neurologist. And they kind of went over the skins with us and I always explain ACC for sure. It's a genesis to the corpus callosum. You can be very, it can be completely gone or partial. And I always look like a bug when I talk about this because it's like it helps the two sides of your brain to talk to each other. And when you're missing, these children can develop seizures at a young age. They might have learning disabilities as they grow up and things like that. But they could not determine correctly if he had it until after he was born. So within his first month of life he had an MRI and that confirmed his diagnosis which we were kind of all planned for. He did not develop any seizures by any means fortunate. And when you hear learning disability as a teacher, I'm like, okay, that's funny. And he came out huge in comparison of my other boys and as I watched him grow and happy. I called him fat and happy. That was his tagline. Asher's fat and happy. And I was fine with it. And he had no deficits. He is one of the smartest little boys. He's two and a half now and he's beautiful. But when he was born we knew we needed to honor Holden. Holden is his middle name. And so that he could have a connection in a way to his brother. And we carry all of that with us every week. It's Sunday. So later on today I will be going to the cemetery. We visit every week. The boys know. And it's not something I force. I say if you'd like to sit in the car, you can sit in the car. You'd like to go see Holden. We can go see Holden. And Asher is always so excited to go see his brother. Even though he's never met him on this earth. And it has become a way to create a beautiful relationship between the two of them. That pregnancy again was supposed to be very normal. But again, well, we've made it a third time with some unknown circumstances. And all we can do is raise them to love themselves. Number one, that they can be whoever they want to be as we grow forward. Your family has gone through this for quite a few years now. And your kids as well. What kind of humans do you hope you're raising? And who do you hope they become the future? I hope they become an advocate. Just like I am. You know, there is, as we said earlier, teachable moments. And I share on loving himself, you know, Holden and Miles. They've holding more still here. You know, they wouldn't be able to choose to hide in a crowd. Miles looks different. His skin is red completely all over. I explain it to kids that we need. It's very easy to say. It's kind of like sunburn, you know, when you're red and you're peeling with skin and you're itchy. It's the easiest connection for young children to understand. But he doesn't look what we would say is normal. And so he has to deal with the stairs and the questions and all those things. And there was a time we were at the mall. He really wanted to play on the playground there. They had a mall playground. And he was playing and a girl came up to him probably, you know, six or seven, eight, you know, around that age. And she kept staring at him. She kept bringing other children over to him and telling them, "Look, this is the kid I was talking about. Doesn't he look scary?" And things like that. I went up to her and I put on my teacher voice, my mom voice and I said, "You know, this is what's going on." And I explained his condition and all these things. I said, "He's just like you. He's happy and he's having fun. He are just like you guys are." And then that was the moment though. He was old enough that I noticed it was the first time that it bothered him. You know, as he's a baby and a toddler, those questions get addressed to me, not to him. And so I said, "Let's go, buddy." And I'm carrying him down the mall corridor and I said, "You do not owe anybody anything, any explanation. If you don't want to sit and go through your life story, they don't deserve that. If it's a day that you just want to share and be your advocate, that's fine. But you can just say, "I was born this way and I love myself." And we screamed down the mall corridor, "I love myself. We were taking turns back and forth because in my eyes, if they're going to stare anyway, I'm going to give them everything to stare at me, stare at me and my child going down this corridor." And it's something that has sat with me, has sat with him and that's the kind of human I want to grow. I want to grow that you can say the meanest thing to me, but I love myself so your opinion doesn't matter. You know, I want Tasha to grow up and he doesn't have anything physical that you can see as a disability, but if something gets hard, I want him to say, "You know, this is hard for me, but I'm going to find my way to do it." Well, I'm going to find my way to do it. It may not be your way, it may not be the way society tells you to do it, but I'm going to find my way because this is who I am and I can't change it and I'm going to love who I am. And that's what I want. And I want them to be self-fished, to feel that way, but don't self-less that if they see someone else feel that way, they're going to do that. I have two children that I would call medically complex, but I still would take their shirt off their back and put it on your child. And that's how I want them to feel when they see other people in need. And that's what I'm going to do, you know, through the rest of our lives. And I hope that I can, you know, be that role model. And again, I feel like that started way back in Taekwondo trying to look at you. They see you and they want to be just like you and you get to be that example. And that's what I do for my students at school. I'm going to be and lead that example of thinking of others being in love with who you are and living your life to the fullest. Again, it's not living in fear. It's something I wear actually every day. It says fear less on it. That's so cool. Not like fear less like Taylor Swift, but we can all say there is a space between going to exist in this world. But if you can fear less of that, know where you're going to be. You don't know what you're going to be able to accomplish. Live in the fear. I like the saying do it scared. So they become those adults that I believe they can be. That was very powerful. Thank you so much for sharing. And for anyone who wants to learn more about Harley Quinnic Theosis, where can they go or if they want to donate to help with research, what can they do? There's only actually one organization for a Theosis. It's called first. I believe I'm going to get the acronym wrong because put me on the spot. It's oh goodness. Foundation. Oh gosh, I forget. But it's a Theosis in other skin types. This is the last part, but that's the only part. If you put in first, you can do it. And I can send it to you later, and I can record it later. Not remember, but it is the only one for theosis. There are other organizations for brain abnormalities for ash. When I think of examples of rareness, I say one in 500,000 ACC is actually one in a thousand. So when doctors looked at me, that's a really big number. I'm like, I've heard bigger. Don't worry about it. But you're talking to the wrong mom. So, but there are many organizations to support them as well, but there is only one for if theosis. And I think it's because there's lack of research. And that's something that I think a society we can do better. You know, there is that saying when it's rare, people don't care. And I, in that negative sense, affect a lot of people. So why dive so much money into it? But those people live their lives every day. Like vials and ash are still holding through my superheroes. You know, they use to wake up every day and they choose to, you know, get up and go through their struggles and figure it out every day. Something, if you're not aware, at the end of February, is rare disease day. I usually, I believe on leap day, but if it's not a leap year, you know, it's on the last day of the month on the 28th, but they pick that day because it's rare, right? So we celebrate these people that are going through these challenges. And majority of the time you're probably walking past the one. You probably know someone with a rare condition and you just don't realize it. And they are truly the superheroes of the world. Thank you for sharing. I really hope this motivates people to go and reach out to help people who may be going through these cases. And if there's only one thing someone can remember from our conversation today, wouldn't you hope it is? I don't, I guess, have to go through this alone. When we say the word strength, we think that it's internal and that you cannot show any, you know, feeling that you cannot do something, you know, weakness. That's the word I wanted. You know, you cannot show weakness. When you're losing something so much that is part of your life, you are going to feel debilitated. You are going to feel that you are at the bottom. And sometimes you feel like you've been pushed down even further, but strength isn't only in presenting yourself to be part of our society and high functioning. Part of strength is doing things like this and speaking about the love that you lost in their life and showing your vulnerability. That is strength to me. And that is why I also think the women and people of this earth are superheroes who may be the ones that can knock it out of bed because they feel that grief so powerful and they have strength. They may not think they do but they do because if they can get up every day and they can speak of the person that they lost, that is strength. And I think that is a very big message that I think it's lost. Thank you so much for these really powerful words and also Emily. Thank you truly for trusting this space with your story. It's not an easy one to tell and honestly just for showing also what love looks like when it refuses to disappear. And so thank you so much Emily for joining us on the Good Quest. And before we go, where can people join you if they want to connect to you? I am on Facebook and Instagram. You can find my journey. I have made everything public on purpose for things like this for strangers to you know go to my page and follow my family's journey and what it's like for my children to grow up and what it's like to feel the feelings that I feel as I go through the grieving process because again it never leaves you. I believe my Instagram handle, it's Emily M but it's with four or five M so I'd have to go back and double check and count. Unfortunately Emily is a very common name. It's okay but you can you know see my path in my journey and you know just if you can connect with anything today I hope you can. Even if you're not following my family's journey really look into your family and your friends and see who's around you you can support you know even if it's something small or something big is going through something like this. Thank you so much Emily.