3: Choosing a Beautiful Life
The story of Carol Decker's life has inspired people around the world to choose love and gratitude despite their challenges. In this episode, Carol tells us what it was like to go to the hospital with what she thought was the flu and wake up to an irreversibly different world and body.
KARYN LAY: Welcome to This is the Gospel, an LDS Living podcast where we feature real stories from real people who are practicing and living their faith every day. I'm your host, KaRyn Lay.
If there's one thing I've learned about this earthly existence, it's that every single one of us will, at some point or another, find ourselves in a place that tests us to our very limits. It will look totally different for each of us, but the request from God is the same. Trust him. Move forward with faith and gratitude. Our story this week comes from Carol Decker. When Carol was pregnant with her second daughter, she went to the hospital to be treated for flu-like symptoms. And when the doctors determined that it was actually sepsis, Carol began the fight for her life that would change everything.
CAROL DECKER: The morning that I woke up with my fever, my oldest daughter was about a year and a half, and I was about 33 weeks pregnant, and I felt like I had the flu. When I went to pick up Chloe out of her crib that morning, I could barely pick her up, I was really weak. And I called my sister-in-law to come over and babysit her for me so I could rest and lay down. And yeah, I just thought that I had the flu.
I kept putting cold washcloths on me and a cold bath and trying to get the fever down. My mother-in-law wouldn't leave me that day. So, when I started having contractions, that's when I called my husband and said, "You need to come home. We need to go to the hospital," because I felt like my baby, you know, was in trouble.
So we rushed up to Seattle and I called the doctor's office first and told them I was going to the emergency room. And they said, "No, come in first to the clinic." So I went in and they gave me a shot to slow down my contractions and then told me that I had a rash on my face, which I didn't realize at the time, and said that they needed to take me over to the hospital. So we waited for a wheelchair and it seemed like it took forever and wheeled me across the sky bridge to the hospital and put me in a room, which seemed like I was way far away from the nurse's station. I was in agonizing pain at that time. I mean, every single part of my body hurt and ached and I was begging the nurses for some sort of relief with the medication. And they finally hooked up the fetal monitor and gave me a shot, and just as the room kind of went quiet, my husband stepped into the corner to call my mom and let her know that we were probably going to have the baby. There was about, you know, five or six people in my room saying, "We have to get the baby out now."
Just kind of figured we were going to have a baby and that I just was sick at the same time and I didn't realize the severity of it. But they went ahead and wheeled me down the hallway. My husband was behind me, and the two nurses were beside me in the gurney and I asked if he could come back with me to the OR room for the emergency c section. And they said, "No, he can't come back with you." And so I turned around and looked at him and kissed him goodbye. And I didn't realize that I wouldn't see my husband's face ever again. That's the last face I saw, was my husband's face and the nurses.
And then I woke up 20 days later, realizing that my whole world had just completely changed.
When I first woke up, my husband came in and he could tell, you know, that something was wrong. And first, he always was wondering how I was feeling if I was in any pain, he was always very concerned about that. And I shook my head "no," and then, you know, he could tell I was still distressed and he said, "Do you want to know about the baby?" And I, you know, nodded yes and then he talked to the nurses and they said yeah, we can get the baby. Which, I didn't realize at the time, wasn't something that they typically do because she was in the NICU and I was in ICU. But, they felt that that might be the last time I ever meet my baby because the odds of me surviving were not that good. So they brought her in and we met cheek-to-cheek, and that's kind of our thing now, we always say, "cheek-to-cheek," and rub cheeks together. And it was a pretty precious moment and, of course, I wasn't able to speak to her because I had an intubation tube in my throat. And I just remember feeling her cheek and her eyelashes and her hair and my husband being in the room, and then I drifted back off to sleep from the medication and they took her away.
I was blind at that time. They didn't know it, just because I was so out of it, you know. But the doctors and the nurses and my husband kept recognizing that I was looking passed them because my eyes were still dilating at that time. So they went ahead and ordered a CT and they found out that my optic nerve was damaged. And they thought maybe my vision would come back in the first year and a half, but it never did. And I don't see anything at all, it's just black.
When I woke up after 20 days, and after meeting Sofia, they hadn't made the decision to amputate both my feet and my hand and my right ring finger. That happened, I think, within the next week. And my poor husband, you know, had to make the difficult decision to do that. And I'm really glad that he did because he saved my life. I think that he knew that I would want to be here and that I would fight to know that I could do it. And, you know, he knew how much I wanted to be a mom.
After the amputations, I didn't really realize that I was missing my feet or my hand or my right ring finger, because I couldn't actually see them with my own eyes and I couldn't feel my legs. There was this time when my mom was sitting with me and she was clipping my fingernails. And I said, "Mom, you missed a finger," and she kept telling me, "No, I didn't." And I said, "Mom, you totally missed a finger." And after like the third time, she said, "Carol, they had to amputate your finger." And they looked at her really puzzled and she said, "They also amputated your feet and your left hand," And I just, it didn't really register to me, I was on so many medications at the time.
So the reality didn't really set in until later. I would say that the pain was there like they had these special vacuum bandages on my amputated legs. And they kept hurting me all the time. And I kept begging my mom and the nurses to take them off and they couldn't take them off. And I was so confused from the medications that I was on. And so the pain was always there, but the reality, because I couldn't see, you know, that visual like seeing your feet gone or seeing your hand gone wasn't there for me. So it mentally took me a while to really realize that.
You think you're going to go home from the hospital and everything's going to be perfect, and you'll go back to your life again, but that wasn't the reality for me. I came into the bedroom and I was in pain and my bed betrayed me. It wasn't as comfortable as I thought it was. And I also realized that I couldn't do anything for myself. I was like a small infant. I couldn't feed myself, clothe myself, or go to the bathroom by myself or anything, I needed help with everything. And I did tell my husband, I begged him to take me back to the hospital, that he couldn't take care of me and that I couldn't be a mother to my children. And that was really hard for me. I just didn't feel like I belonged in my home and I couldn't do the things that I did before. And I still was really depressed, you know, I think I cried almost every hour. And I was in a lot of pain at that time because going from being at the hospital, the nurses taking care of you, and being on IV medication, to taking medication early, it was hard to get on top of the pain and new pain kind of set in. I think the one thing that really bothered me was that when my little girl, Chloe, who was my life, that I never left her side for a day, was scared of me and didn't want to come to me. And also that I could barely hold my youngest daughter who was a baby on my lap because I was in so much pain, I could only go there for a few minutes.
My brother came over to me and he asked if there was anything that he could do for me. And I thought long and hard. And at that point, I was really down, that was in the depths of my darkness. And I told my brother that he could get a gun. And he came around the sofa and he put his hands on my face and told me we're not going to go there. We're not going to do that. And that he was going to be there to help me and I said, Okay. But, I knew that if I didn't start working hard and do the physical therapy and occupational therapy and everything I needed to do within the first couple of years, that I wasn't going to gain anything back sitting there. And so if I really wanted to be their mom, I needed to get up and get moving. And so I made a choice. To live for them and to live for my family and for all those people that supported me.
I met my husband in 1995. And we got married in 1998. So we've been together for a really, really long time. And he's the love of my life, he's my soul mate. And we created this beautiful, you know, life for each other and I felt that I just didn't want to give up on that. That my whole life I wanted to be a mother, it was like my dream, and we waited nine years before we had kids, since getting married. And I felt so grateful to be a mom and I loved every minute of it, to singing songs and reading books at night. And there were so many things in the beginning when I was in the hospital, I would tell my brother, Heath, who was by my side every day, that I was never going to make cookies with my kids again, and I was never going to read them books again, and I wasn't able to do any of that stuff.
To be a mother to Sophia and to have never seen her face before, I had a hard time, in the beginning, I have to be honest. Every mother wants to bond with their child, and I never got a chance to just stare at her like I did with Chloe and hold her in my arms. And it was really hard for me to connect with her, because when I did hold her, I was in a lot of pain. And she couldn't communicate with me with words yet, so there were some things that I started doing. I would trap her in the corner of the sofa and lay next to her so she wouldn't roll off the sofa. And I would put my head into her belly and make her laugh and she'd grab my hair, and I found ways that I could interact with her. And my nanny at the time, Erin Stout, made me a necklace with a ribbon with a baby chew toy on it so she could sit with me and play with a toy. And then we made an apron that had little pockets with little toys in it that she could grab.
And one story, in particular, that's pretty special to me, Sophia woke up from her nap and I said, I want to feed Sophia. But I want to, I want to feed her in her room. And I couldn't get in her room in my wheelchair, so I had to walk in there. And that was the first time I walked into her room with my Walker. And I sat in her little nursery, in the wheelchair, and Erin brought me a bottle. And I had a special tool that connected to my hand where the bottle would clip in because I couldn't really hold things very well with my hand. And so the bottle, we would clip it in, and then I would feed my baby. And as I sat there and rocked her and fed her, I stared down at where her face would be and I thought she was looking around the room, just enjoying things, and next thing you know, she reached up and grabbed my eyelashes. And in that moment, she was my baby. And she was looking at me, and I was looking at her and that's the first I really felt like I was her mother. It's one of the most beautiful memories that I have.
And the physical therapists and the OTs and all the people around me, they started figuring it out that if they could find ways to incorporate my children into my therapy, that they could get me to do anything. So they started doing that, and within those first couple weeks that I came home, a bed opened up at the rehab center at Harborview. And so my doctor said I could come in and start therapy, inpatient rehab for five weeks, and so I made the choice to do that. And that's really intense. It's like going back to school to learn to live again.
They teach you how to eat and dress and walk on your prosthetics and change a fake baby's diaper and make you do all sorts of cool stuff. And teach you, as a blind person, where to find your food on your plate or, you know, things like that. So I learned to overcome challenges in trying to dress my children and find clothes that didn't have zippers or buttons so that I could help them get dressed, or learning, for the first time, to give them a snack. I remember getting a yogurt out of the fridge and ripping off the top of the lid with my teeth and setting the yogurt on the table and being like, "I did it!"
I always tell people, it's like I kind of went into the toddler phase and I kind of would watch my children as they were learning to do stuff. And I was like, Okay, well, they figured out how to do it, I can figure out how to do it. And so we were kind of going through the stages ourselves of, that I did it you know, for the first time. All of us were us, three girls. So, you know, those were big accomplishments for me. Most people don't get those second chances in life or to be able to have firsts like that and it's a really big deal, it kind of motivates you.
When I was in rehab, my older brother, Sean, who's five years older than me, passed away in the first week that I was in inpatient rehab. And that was really hard. To this day, it's harder than being blind, you know. I'd give anything to have my brother back and I could care less about my sight or my feet. I hadn't been going to church for 10 years. I didn't think I had any faith left in me. Everyone would tell me that people were praying for me, and I just didn't know what my purpose was here, you know? How I was ever going to do this, and why was I here. But, it's that really dark place, of losing my brother, that's when I started asking questions to myself. Why am I here if my brother is gone, and my body is broken, and I can't do anything for myself right now, what's my reason? And that's the first time I prayed in a long time.
I always knew, in my heart, that God existed and that if I asked him to, that he would watch over me and help me to know what I was supposed to do. And it's amazing to me that sometimes in our deepest, darkest, saddest moments, that we realize that we're not alone and that someone higher than us is helping us. And as long as I was willing to surrender myself, that I would be willing to do whatever it took. That I could, you know, be able to gain back my life. And it didn't happen overnight. It was a long struggle of, you know, still questioning everything. Why did this happen to me? What did I do wrong? You know, how could I have done something different? Or you know, you just go through these questions constantly. And I can honestly tell you that without the gospel, and the principles that it teaches you about faith and humility, and hope, and forgiveness, and love, and charity. And those are all like, real-life lessons that I have learned in an actual way, and it's a really beautiful gift.
I know people think I'm crazy because I call that a gift, what happened to me, but I wouldn't change anything because I've learned so much and I don't take anything for granted. And I'm so grateful to be here and to be a mother. And I have such a different perspective on life now, I want to enjoy it to the fullest.
My perspective on life has changed in so many different ways. I would say the most thing that's changed is my gratitude about life, in general. When I wake up in the morning, I could really, you know, honestly say, okay, my body hurts. I have to get up, and I don't get up like a normal person. I have to actually sit up and use my abdomen muscles, instead of pushing off with my feet and I have to roll over into my wheelchair that sits next to me. But, as I think about those moments, I'm grateful that I actually get to sleep in a warm bed. I'm actually grateful that I have a wheelchair that I can push myself and I can get into the shower and that my girls are going to come running in at any moment and say, "Hi, mommy!" And I think it's like a mental switch that you have to do in your head, you know, you could sit there and think about all of the negative things that are happening around you. But it's a choice that I make every day, to not think like that. To think of the things that I do have and not the things that I don't have. As a blind person, your perspective changes as well. I listen differently now. I listen to people when they're speaking, I listened to the birds outside in a different way or in the fall when the leaves are on the street, or the smells of a fireplace, all of those things in your perspective change. And you appreciate things a lot more than you ever did before. And I also think that I realized that I shouldn't really be here probably, but there was a really high percentage of my survival. And that I didn't want to be a victim of what had happened to me and that I wanted to turn that into something good, instead of something bad. And I wanted to be a survivor, and not only was I survivor, but I'm also a "thriver" because I want to live life to the fullest.
The reason that I wanted to share my story with other people, was that when I first came home from the hospital, I was looking for a book on how to do this. And there really wasn't a book on how to, you know, heal from sepsis and be a mom of young children. And I felt like I wasn't going to ever relate with anyone. I didn't know any other moms that were blind triple amputees and had the multiple skin grafts over their body. So I didn't think that anyone was going to be my friend, and why would they want to hang out with me anymore because I couldn't do anything. And there was this, the community and my church would bring meals into my home at least three times a week. And my nanny at the time, you know, I kind of would hide and put a blanket over me and I didn't really want people to see me. She could tell that I was uncomfortable with it, and she said to me one day, "You know, Carol, these people just want to serve you, they want to help you, they want to be a part of you. And you need to let them into your life and let them serve you. Because by you letting them serve you, you're giving them blessings, and they're trying to bless you."
So I thought about it for a moment, and I realized that she was right, as she always was. And I started allowing people to enter my life again. The community held a fundraiser and 5000 people from my town of 11,000 people came to support me and to raise money for us. And at first, I didn't want to go to the fundraiser, because I didn't want people to stare at me and look at me like I was a freak. But my mom got me ready and put some makeup on me and put on some clothes and wheeled me in. And from the moment that we walked into the fundraiser, everyone in the room stood up and started clapping for me. And when you're blind, you can't see all those people in the room. But when they start clapping, you can hear the thousands of people that were there. And tears just started streaming down my face, you know, I couldn't believe that all these people were here to help me. And I felt like it was a big cheering section for me telling me that I could do it, and I couldn't believe that complete strangers would be willing to sacrifice their own time and money to help me and my family. And then I realized, that we're all going through some sort of loss. And mine isn't any greater than anyone else's, it's just different, and that we could be there to support each other, and love each other. And for me, I felt like I could turn something bad that happened to me into something good. And I wanted everyone to have that hope that they could do that as well, in their lives.
I have so many, so many challenges that were placed before me, but within all those challenges have been multiple different opportunities that I didn't even think were possible. And my life has taken me down a journey and a path that I could have never expected. I've met so many beautiful people, that if I didn't go through what I went through, I would have never met or never had those experiences. And sometimes, when bad experiences happen to us, we have to realize that there will be good experiences to come down the road.
I'd say the things that I would want people to learn from my journey is to be forgiving on yourself, you know, to not be so hard on yourself and to realize that you're going to make mistakes and that's okay. And you all have a choice to make a positive influence on people's lives. And that choice is the most pivotal thing that you can do. Every day you wake up and you make choices all day long, and they can take you in different directions and that those choices can lead to so many great things that you didn't even think were possible.
KARYN LAY: What a blessing to be able to recognize the power of our choices. Carol's story inspires me every time I hear it because it's a reminder that it's okay to spend some time being angry and sad about what's lost. But in the end, we believe in a Savior, who is the Redeemer of all things. And by choosing to show gratitude for what we have and who we are, we acknowledge that never-ending gift. So what will you do today to choose gratitude in life?
Thanks to Carol Decker for sharing her story and her love for the Savior. To learn more about Carol and some of the amazing things she's able to do, despite her challenges, go to our show notes, we'll have a link to Carol's website there. And thank you for joining us for This Is the Gospel. To hear more real stories from this podcast or our video series, or to pitch your own story, visit us at LDSliving.com/thisisthegospel. And don't forget, if you love the stories that we've shared, rate us on Apple, it'll help more people to find us. Have a great week!