As we navigate the delicate terrain of grief, Susie Taylor joins us to share her powerful story of love, loss, and the enduring strength of the human spirit. Through the memory of her son Evan, who bravely faced significant medical challenges since birth, we uncover the raw emotions and the unspoken bonds that form in the wake of such an incomparable loss. Susie's candid recollections shine a light on the joy and laughter her son brought into their lives, while also exploring the significance of honoring our loved ones and the personal journeys that follow our deepest sorrows.
Embracing the legacy left by those we've cherished is a profound testament to their impact on our lives and the world. In our conversation, we delve into how Evan's life led to remarkable advancements in neonatal care, illustrating the profound influence one individual's journey can have on medical progress. Susie's involvement with the County Board of Developmental Disabilities and her dedication to honoring the memory of consumers who have passed resonates deeply, offering solace to those navigating the intricate paths of healing. Together, we reflect on the uniqueness of grief and love, acknowledging that each story is as distinct as the memories we hold dear.
As we navigate the delicate terrain of grief, Susie Taylor joins us to share her powerful story of love, loss, and the enduring strength of the human spirit. Through the memory of her son Evan, who bravely faced significant medical challenges since birth, we uncover the raw emotions and the unspoken bonds that form in the wake of such an incomparable loss. Susie's candid recollections shine a light on the joy and laughter her son brought into their lives, while also exploring the significance of honoring our loved ones and the personal journeys that follow our deepest sorrows.
Embracing the legacy left by those we've cherished is a profound testament to their impact on our lives and the world. In our conversation, we delve into how Evan's life led to remarkable advancements in neonatal care, illustrating the profound influence one individual's journey can have on medical progress. Susie's involvement with the County Board of Developmental Disabilities and her dedication to honoring the memory of consumers who have passed resonates deeply, offering solace to those navigating the intricate paths of healing. Together, we reflect on the uniqueness of grief and love, acknowledging that each story is as distinct as the memories we hold dear.
The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent.
Speaker 1:
Welcome to, as I Live in Grieve, a podcast that tells the truth about how hard this is. We're glad you joined us today. We know how hard it is to lose someone you love and how well-intentioned friends and family try so hard to comfort us. We created this podcast to provide you with comfort, knowledge and support. We are grief advocates, not professionals, not licensed therapists. We are you, hi, everyone.
Speaker 2:
Welcome back once again as I Live in Grieve. See, the voice is getting a little bit better maybe steps, but I'm hanging in there and that's why I let the guests do a lot of talking. It's scientific and it works. So glad you joined us again today. I do want to ask you all a favor, though. If you're on Facebook and I think most of you are there's a page for as I Live in Grieve. If you had pop over to that page. It's been dormant for a while, but I really want to focus on this in the upcoming weeks and months and I want it to be an active, interactive community. So if you would please pop on over and join the group as I live in grief on Facebook.
Speaker 2:
With me today is yet another great guest. I find them all. Well actually this one found me. Susie Taylor is with me today. Hi, susie, thanks so much for joining me.
Speaker 3:
Hi Kathy. Thank you so much for inviting me. I so appreciate it.
Speaker 2:
Absolutely. This is my pleasure. Susie reached out to me as she was writing an article for a newsletter and she wanted to offer some resources for people that were grieving. So she found this podcast and interviewed Stephanie and I, and it was a delight. During that interview and as we got to know each other, I found out that Susie herself has been a griever. But I'm not going to tell you her story. I'm going to let her tell you. Susie, the floor is yours. Tell us about Evan.
Speaker 3:
Oh well, thank you. I said before we started recording that I could talk about Evan all the time, and this is one of those opportunities where people aren't going to be a little uncomfortable because they're all. They always think they're going to make me cry, and you know, guess what? It really doesn't matter. I love talking about him.
Speaker 3:
Well, evan was my husband's and my oldest son. He was our into the frying pan indoctrination to parenthood. We tried to get pregnant for many years and decided that we were going to adopt. And then, what do you know? Lo and behold, god said I have this special kid for you and he's going to change your life. And boy did he change our lives, that was for sure. My water broke with him at 19 weeks. Through the pregnancy I was on bed rest until he was born at 26 weeks.
Speaker 3:
He spent the first five months of his life in the hospital. He had a brain hemorrhage. He suffered from retinopathy of prematurity. He was on a ventilator for so long that he never really developed that sex swallow instinct that babies develop. And so when we brought him home at five months old, he was blind, was fed through a G tube, and at that point we did not know what his physical disabilities were going to be. When he was two he had his first seizure and that was our big indoctrination to neurology, which was very interesting because our youngest son ended up being diagnosed with epilepsy as well. But by the time we got through he got to a pretty stable period of his life. He was still blind, seizures, a nonverbal, a fed through a G tube and diagnosed with hemiplegics, cerebral palsy, which basically affected the left side of his body.
Speaker 3:
I say he was our indoctrination because we had two other sons after him and they really just I mean, that's what they grew up with. They grew up with a brother who would go to the hospital every now and then. We would call the squad every now and then they would sit in the emergency room with us for four hours. We had a whole bag of toys and books and things that they could do because we never knew when we were going to be off to the hospital. So that's what they grew up with and they turned out to be pretty good men and I think Evan for that.
Speaker 3:
He passed away in June of 2021, actually on my husband's in my 38th wedding anniversary and I think he was going to make sure that we never forgot like we ever could. But you know, he made sure we were going to never forget. He was 28 and a half when he died and he actually was a pretty happy guy. I remember when he was in the NICU and it was one of those weekends when the doctors told us that he probably wouldn't survive the weekend and my husband and I sat next to his little このん呐 喎 incubator bed thing, whatever they're called now I don't know if they're still called incubators or not.
Speaker 3:
That was 30 some years ago, but and we prayed. We prayed, lord, if you are going to take him, thank you. Thank you for for giving us him and putting him in our lives. But if you're going to leave him here, help him to be a happy boy. We just want him to be a happy boy. And he was, oh he. He had a laugh that could make anyone giggle and he was rotten to the core. He was such a stinker. His younger brothers love to play video games and he would sit in his wheelchair and yell, and yell and they finally got to the point where they, whenever they started playing video games, they would just wheel him into his bedroom and close the door because they knew.
Speaker 3:
That he was going to be making all kinds of noise so that he could interrupt their game and get some sort of interaction from them. But typical sibling. Oh my gosh, oh my gosh. But he, I said he was non verbal. He did say mommy and daddy and no. What child does not know how to say no, the word no?
Speaker 3:
You could ask him Evan, do you want to breathe today? And he'd say no. No, I remember one time we sent him to his adult day have program with the jacket on. It was one of those spring days where it was cold in the morning, got got warm throughout the day and he came home wearing his same jacket and he was soaked with sweat and we're like why did you not take his jacket off? Well, we asked him if you wanted to take his jacket off and he said no. And I'm like you cannot let him make those decisions for himself. No, yeah, because he. You would ask him, do you want to breathe? And he would say no. So guess what, it's too warm for you, it's too warm for him.
Speaker 3:
So, yeah, yeah. So, and it was really kind of funny because when we planned our house we only had two sons, and when we moved in we had three, and so for a while our youngest slept on the bottom bunk of the bed that Evan slept in.
Speaker 3:
And then when, when he got too big and we needed to hire a lift, we had to take that bottom bunk off, and so our younger son went to go stay and slept in a trundle bed in his other room and we realized that he was sleeping most of the time on the couch. So that's when my husband and I moved to the basement and we moved Evan into our room and that meant Derek and Phillip each had their own bedrooms and all was right with the world. And then, and then COVID hit and the September of 2018 my mother moved in with us and then, in November of 2018, she was diagnosed with colon cancer. So I was primary caregiver for Evan and for my mother and she passed away in January of 2020 before COVID came. And then COVID hit and he was in heaven because his dad was home all day. I was home all day, everybody was there I mean he, he, everybody that he wanted to be there was at home, and he was happy.
Speaker 3:
So then, in August of 2020, he started to have some symptoms that we just could not identify. We knew he was in pain somehow, but by the time we got to the point where we decided with the pediatric surgeon because you know, everyone who's 28 years old deserves a pediatric surgeon Sure, and he went through every test that they could go that they could figure out, sometimes three times. He was impatient for a week to do those tests all over again, and the only thing that they could find was something that he had been living with since he was six or seven years old, and that was his. He developed a hole in his diaphragm and his stomach herniated up into his chest cavity that did not cause him any trouble.
Speaker 3:
He did not exhibit any problems with it whatsoever. But after doing all these tests, that was the only thing that the surgeons could point to, and the reason we hadn't done anything to fix it was because we knew it was going to be a very, very difficult surgery, and as it turned out it was. He was in the ICU for five weeks after his surgery, never woke up after the surgery and passed away then on June 21 of 2021.
Speaker 2:
Oh, my goodness, my goodness that was.
Speaker 3:
That was tough yeah.
Speaker 2:
Yeah. So so much of your story. Honestly, susie, I would say, is tough, yet tempered with that toughness and the difficulties and the challenges. Our listeners can't see this, but you've had a smile on your face the entire time talking about Evan, even though you're talking about some of the most difficult things that we have to face as human beings and certainly as parents as well. There is so much in your story and I'm betting everyone who's listening is thinking, oh my gosh, oh my gosh, oh my gosh. Yet at the same time, at the center of it all is this beautiful, beautiful young man who not only brought such brightness to your life and the life of his family, but I'd be willing to bet almost everyone he came in contact with that, despite his challenges, his personal challenges, any pain he might be feeling or anything, he still brought smiles to people's faces.
Speaker 2:
Absolutely we would be at it.
Speaker 3:
I'm sorry, I'm sorry, no, no, no, go ahead. We would be at at the grocery store and someone who I did not know would come up to us and say, oh Evan, how are you? And I'd be like, who are you and how do you know my son? And they'd be like, oh, I, because he went to the Ohio State School for the Blind. Oh, I was at the school for the Blind last week and he just struck me. He was just so happy and laughed and he always had his hair color, was I mean, he was a ginger, he was, and we swear that's what kept him alive was that ginger hair color. And and it was just so fun because he would recognize people's voices and we could tell someone would come up and say Evan, and he would respond to them because he'd recognize their voices and we didn't know who they were. We had no idea who they were, but, yeah, he had a big impact on a lot of people, a lot of people.
Speaker 2:
Yeah, yeah. And and your faith is also very, very strong in this story. I love the phrases you said in your prayer to God that if you take him, thank you, if you don't, okay, you know, and I just, I just loved that entire sentiment that you could have the strength of faith to say it's your choice and your decision, and whatever you decide will be okay, will be okay, will accept your decision yeah there is so much grief in your story.
Speaker 2:
There's the grief of not having that perfect child that we all think we're gonna have in pregnancy. There's the grief of knowing what your other, your other children were going through as well. Yet for them, this is normal, because this is what they were born into and raised up with. You and your husband both pulled together and managed this and, yes, it was certainly an indoctrination to parenting but not just parenting to life in general. When you don't get what you thought you were gonna get, yeah. Yet you continue to put one foot in front of the other and move forward and in that process, you can look back and smile about this traumatic, filled life that you experienced. You have. You're just sparkling with these memories of Evan. I just love it.
Speaker 3:
I just love it, thanks, thank you Now.
Speaker 2:
I'm sure there were moments, despite it all that, that you probably said, oh my god, did we make the right decision, especially near the end with the surgery, because you knew all along this was going to be a very, very difficult, very intrusive surgery. Were you made aware of the risks? Oh yeah, oh yeah.
Speaker 3:
So they were very clear we knew they were very clear. And it's really unusual because my husband didn't grasp the severity of things until maybe a couple of weeks after the surgery. And it was weird because I mean, we both were in the same meetings and I kind of I mean, when they, when he came out of the first surgery first surgery was supposed to be four hours long, it was eight hours long when he came out that and they had moved his stomach down into his abdomen, there was not enough room and they could not close his abdomen. And I think that as soon as I knew that I knew this was this was really serious, that this was not going to be a normal ear tube adenoid surgery removal surgery.
Speaker 3:
It wasn't even going to be a replace the G tube surgery it was. It was. It was life and death. And I think I mean I was, I was pretty much there in the hospital all the time and, and so when my husband was there, he would get information secondhand and usually he wasn't the one who talked to the doctors and when they rounded, when they would round every morning, I could just hear in their voices, you know, that they thought, and I'm probably, I'm probably projecting on to them, but I could hear in their voices that they just knew he wasn't going to recover.
Speaker 3:
And at one point I remember they were doing their rounds and they asked me at the end you know, do you have anything you want to say to us?
Speaker 3:
And I kind of looked at them all and I'm like I know you look at this man, this young man, and you see someone who has had a terrible quality of life that it's probably a blessing that he's going to pass, but he has a family who loves him, a lot of people who love him, love him, yeah, and you are going to learn something from this experience of dealing and treating him that's going to save somebody, some other kid in the future and learn everything that you can while he's here and while he's available. I remember after he was born I was. I would just think you know he's got to have some sort of a legacy. There's a reason why he's here. And then when I would hear about other kids born at 26 weeks, like three years ago no problems that and I'm like that's Evan's legacy, that's why he was here, so that those doctors 30 years ago could learn how to deal with these tiny babies.
Speaker 3:
And I just told them I'm like learn what you can about what he's going through, so that you can help some other young man in the future whose life you think was probably not worth living, and I'm here to tell you that he had a happy life. He was a happy guy and we loved him and we will miss him terribly. And I think every single one of those doctors came into the room later in the day to say thank you.
Speaker 2:
Yeah, they had time to think about it and I used the word legacy and I was thinking. One of the questions that I was going to ask you coming up was you know how you are building a legacy for Evan? But yet I love what you said. Evan's legacy is better that.
Speaker 2:
His legacy, his intention and what he has given the world is an active life learning experience for medical staff and that, as they practiced on Evan, as they worked with Evan and tried to help him and save him and give him a better physical life, that was his legacy was to be here for that reason, which makes Evan absolutely incredible, and I have to say, susie, it makes you as a mom also incredible for being able to find that and attach that legacy to Evan. I just absolutely love that. I really do, and I know that will resonate with listeners as well. Now I lost a baby full term baby within 24 hours after he was born and I didn't have at the time or I couldn't find it the strong faith that you had, and I also had a spouse who was not at all supportive me, and well, there's a whole long story after that. That's not pertinent, but I don't remember ever, ever finding any brightness with that experience at all.
Speaker 2:
I have no smiles when I think of that, but then when I think you didn't just oh justice, the wrong word trivializes it you didn't lose an infant at birth or a day later. You bonded with, you, loved you, cherished, you parented Evan and through all of those challenges and all of the really really tough times and all of the life and death situations, you still are so positive in this experience. You're incredible, you really are.
Speaker 3:
Oh goodness, oh, kathy, I'm so sorry that you had that experience.
Speaker 2:
Well it's, you know it. Probably it may have been a strength building for me, because it was life-changing for me as well, and everything happens there's a reason. Just at the time, I didn't have that faith to draw on, so it was real tough for me. However and that was so many years ago that I didn't even grieve that loss I'm grieving it now. I'm going through that experience now, but what I wanted to get to was the word legacy, and I will remember forever your comments about Evan's legacy. Forever, truly. But you yourself are building more legacies to honor and memorialize Evan. Tell us what you've got going on.
Speaker 3:
Well, I am a member of our County Board of Developmental Disabilities here in Ohio. The consumers that get disability services receive them through a County Board of Developmental Disabilities and so I am on our board of directors and so I'm one of the folks who we have a meeting tomorrow where we're going through and getting board member training and getting finding out. You know everything that's happened in the county in the last month. But our superintendent asked me right after Evan's funeral. She said I'm gonna ask you to do something in the future. I'm not gonna tell you what it is now, but just when you're ready to hear, let me know and I will. I will ask you, and what she asked me was so he died in June, in January. I'm like, okay, I'm ready. What? What is it that you want to ask me? She's like we don't pay much attention to our consumers who pass away, and we need to. We need to pay attention to those consumers. Those families deserve us to remember their family members, and I want. She said she wanted me to write a monthly column that would go into the monthly newsletter that would go out, and so, in February 2021, I started writing this column and, with a couple of exceptions. I have written something every month since then and that was the reason I contacted you to start off with was because I wanted to start introducing some of the folks to some other resources that they would have.
Speaker 3:
I kind of figured that they were probably tired of hearing about me and about how I got through it. You know big deal. You know what can you, what can you provide to me to help me? Not not, you know, quit telling me about you, and so that's when I found, as I live in grief, and you were so gracious to allow me to call and and interview you and Stephanie, and that was, that was one of the highlights of the whole process of doing this newsletter. I haven't finished it yet, so I haven't given it back to you yet for you to look at it and make sure it's okay but I'm not worried about it at all but and I think I would give anything to have him back.
Speaker 3:
I would give anything to have him back, but of course, I have met some amazing people, you and your daughter included thank you because of the fact that he's not here and I kind of look at that as one of his last gifts to us.
Speaker 3:
We had 28 years where we could not just spontaneously go out to eat. As he got older, he got more vocal and when people started asking to get moved from their tables in the restaurants, that's when we realized that maybe we shouldn't be taking him to Applebee's anymore or Texas Roadhouse, because he would. We could tune him out because we were so used to it, but other people just could not tune out the rocking and the humming and the you know all that.
Speaker 3:
And so we just couldn't just go out and do anything. Right, we figured out that we couldn't go to the movies because Evan would hear something that would tickle his funny bone and then he would spend the rest of the movie trying to reproduce that sound so he could laugh. And then one of us would have to take him out and sit in the hallway while the other sat in the movie with the other two. And it just got to the point where my husband would take the other two boys to the movie and I would movies and I would stay home with Evan. Right, right. And so just the fact that my husband can come home from work and say let's go out to dinner and we can go, that is a gift, yes, and I remember sitting at my desk the week after his funeral thinking what am I going to do now? What am I going to do now?
Speaker 3:
My best friend was his nurse, who had been in my home pretty much every day for the last 15 years. Right, and now she's gone. What am I supposed to do? So I decided to go back to what I was doing when I got pregnant with him, and that was be a writer. Help other businesses figure out how they can make their businesses grow, and that was Evan is now allowing me to live a dream that I had 40 years ago, when I first started writing. I hear him. I hear him every day. When I do something that I think is really cool, I can hear him say yay, mommy, mommy, mommy, mommy. Or if I do something that probably was not the best thing in the world, and he'll just say mommy and I'm like I'm so sorry, I'm so sorry.
Speaker 3:
But? But he is here with me every day. We hear his wind chime go off and I say good morning Evan. We hear the dog spark and I can imagine hearing him laugh. We hear a geese go over the house and it's like hi, evan, love you too, and I've told so many people that when I die, I just know that I'm going to be standing in heaven talking to Jesus. And there's going to be this tall, redheaded, handsome man behind Jesus waving his hands, saying mom, mom, it's me, it's me, it's me.
Speaker 3:
And as much as I want that to happen, like today, I know that that's probably not the best thing in the world to wish for, but I'm really looking forward to being reunited with him.
Speaker 2:
Absolutely. I have tears in my eyes. Oh, I'm sorry.
Speaker 2:
No, don't apologize for that, don't apologize for that. And, like you say, you know you've met some of the most wonderful people. I feel exactly the same way with this podcast. We're fast approaching 170 episodes and that means probably 160 people that I've met, and without exception all right, there is maybe one, but without exception. Even that one taught me something I have been blessed beyond, beyond any definition, in the people I've met, and they have helped me grow, they have helped me learn, they have helped me become the person I am at this very moment Nice and none of that would have happened had I not endured the losses I have endured.
Speaker 2:
So I will have a little bit of gratefulness in my heart for that loss. And it takes a while, I think, to get that perspective on grief and on grieving. But if and when you do, your life suddenly becomes more fulfilling and much richer.
Speaker 3:
Oh yeah.
Speaker 2:
And much richer.
Speaker 3:
Oh yeah.
Speaker 2:
So if Susie chooses, her contact information will be in the podcast notes, including a website where, should you know of someone that might need some help with work and some writing, you can reach her as well. Or if you just want to reach out to her and kind of empathize, kind of bond, kind of support, I know she'd appreciate that too. I want to tell everybody there is there's several quotes that have been adapted, but I think it started centuries ago, probably, with an African proverb that said for as long as you speak their name, they will live forever. So, whoever you have lost, I challenge every one of you at least once a day, at least once a day, to speak their name out loud. Think about how you feel If you happen to meet somebody at the grocery store and you get talking and I know, for me it's usually if I go to one of the Vets meetings, because my husband was a Vietnambet and if I go to one of their meetings, I always go there if I need hugs, because there's over 100 of them and everyone of them will hug me, and in that time they always say I miss Tommy or gosh, I'd love to go have coffee with Tom.
Speaker 2:
Every time I hear his name I get a big smile on my face. He was my husband. He was also a really, really good friend, and this Saturday will be six years without him. Oh, kathy, so I'll be going to those vets and getting all the hugs I can get. Yeah, again, listeners once a day, 10 times, if you choose. Once a day, speak their name. You'll remember them and they'll live for all, for all the time. Yeah, suzy, is there anything special you'd like to say to everybody before we wrap up?
Speaker 3:
I think mostly what I want to say is don't let anyone else tell you how you should grieve. Your grief is because you loved someone deeply and that person isn't here anymore and you miss them. And it's been three years for me and there are still times when I mean just the other. Well, I'm going to tell you how bad my laundry is because we found a blanket that was one of Evan's blankets at the bottom of the Mount Vesuvius pile of laundry in my basement in front of the washing machine, and it was a surprise to me to find that my husband does the laundry. He brings it up, I fold everything, put it away. So I'm going through this basket and I find this blanket and I just cried, I just hugged it and cried and but that just reminded me how much I loved him and I still love him. I will love him for that Absolutely, absolutely.
Speaker 3:
Yeah, yeah. Absolutely so don't let other people tell you how you're supposed to grieve. You do it your way. You do you boo.
Speaker 2:
Amen to that, amen to that, yeah, okay. Well, sadly, I had to say goodbye. I always hate this part because I always enjoy our conversations, and today has been no different. I'm going to have to wipe the tears from my eyes, but me too. They're good. They're good tears, they're good tears, yeah, and I feel like now I'm part of your family and I have memories of Evan in my head, so his name will be on my lips too.
Speaker 3:
Oh, awesome, wonderful, they truly will.
Speaker 2:
Wonderful, Absolutely Listeners. I hope you'll come back again for the next episode. I hope you've enjoyed today's episode and, through the tears, trust that Susie and I are smiling thinking of Evan. Take care of yourselves and come back again to listen as we all continue to live in grief.
Speaker 1:
Thank you so much for listening with us today. Do you have a topic that you'd like us to cover or do you have a question from one of our episodes? Please email us at info at asylevengrievecom and let us know. We hope you will find a moment to leave a review, send an email and share with others. Join us next time as we continue to live in grief together.