Beyond Existing
Has life's struggles left you feeling like you were going through your days "just existing?" In this podcast you will hear stories/testimonies from myself and others who have dealt with the struggles life has to offer and getting to that place in which life is being lived "beyond existing." I appreciate all of those who have been willing to "put themselves out there" to open up and share personal information for the betterment of others.
Beyond Existing
Staci and Thom's Journey of Love, Loss, and Karlee, their Christmas Angel
What happens when the unimaginable becomes reality? Staci joins us to share her deeply personal journey of love, loss, and hope after the passing of her beloved daughter, Karlee. In recounting her story, Staci reveals the strength and faith that carried her and her husband, Tom, through the trials of a heartbreaking diagnosis. From a loving marriage to the challenging road of pregnancy, Staci opens up about their decision to embrace the journey of welcoming Karlee, a baby diagnosed with hydranencephaly, into their lives.
Staci's story is not just about loss; it's a testament to the enduring power of faith and community. By sharing Karlee's legacy and the profound impact she had on her family, especially her siblings, we delve into the importance of cherishing every fleeting moment with loved ones. For anyone experiencing grief, Staci offers wisdom and solace, highlighting the healing found in shared memories, faith, and the unwavering support of loved ones. Join us as we remember Karlee and the compassion she left behind.
Today I want to welcome a special friend. She and her husband experienced tremendous loss but at the same time, their light shines bright. I've asked her to come on the podcast to share her story of surviving the loss of a child. Stacey is one of the sweetest and most kind-hearted people that I know and I'm so glad you get the opportunity to hear the love, courage and faith that has kept her going. Stacey, thank you so much for sharing your testimony and opening up oh, my pleasure.
Speaker 3:First I want to start with a little bit of history about you and Tom. Okay, All right.
Speaker 2:So Tom is eight years older than me and he joined the church that I go to, st Peter's Lutheran Church. That's the church I grew up at, and he joined when he was a teenager and so I watched him from a distance because he was in a totally different age group from me, so I didn't really know him very well, but I admired him from a distance. We'll put it that way. Our paths crossed again. I was married to someone else and singing as a substitute in our contemporary band at church, and so you know I had two children when we met again and then consequently went through a kind of a rough divorce and we started dating soon after that. Yeah, I always wondered why he never married and he was actually 40 when we married. So he was fabulous about stepping into a ready-made family, because I had a four-year-old and a nine-year-old son and daughter and he just made a great stepdad. They've been very blessed to have him in their life.
Speaker 3:That's awesome. So how long had you guys been married when you became pregnant with Carly?
Speaker 2:About not quite two years. Yeah, not quite two years, because we got married in 2004. Actually, it was just right at two years when she was born.
Speaker 3:Okay, yep, okay. So now explain to us a little bit about your pregnancy.
Speaker 2:Okay. So you know, as far as we knew, everything was great, um, except, you know, as as we went through the pregnancy they kept saying and they didn't sound like it was a really big deal they just started talking about how her growth wasn't on track. She was small, she was measuring small and, um, never really made a big deal. I'm sure she'll catch up. You know nothing like that. We first knew that there was a problem. There was a friend of mine at church that was also pregnant, who had run into someone who was practicing that was right when 4D ultrasounds were coming out, you know, when you got the really clear picture of the baby's face for the first time. And she knew someone that was training on a piece of 4D ultrasound equipment in a neighboring town, like 20 minutes away or so. And so she hooked us up with this girl and we didn't have to pay for it because she was practicing on it. And so we went up on a Sunday afternoon and so we got, you know, she got me all hooked up and everything, and immediately she stopped and she said what are they saying about her head? And I'm like nothing other than that she's just measuring small all over. And she said we're stopping right here, and who's your doctor? And she got like, on the the doctor on call number. She called my physician's office and asked the operator at the hospital to put her in touch with my doctor and she said this is what I see, you need to get them an appointment tomorrow at Baptist. And so my my doctor, dr Farouk she was fabulous through all of this. Um, she did, she pulled some strings and we got.
Speaker 2:We had an amniocentesis the very next day, which just happened to be my birthday at Baptist to take a look. And you know they thought that maybe they were preparing us to hear things like she may have Down syndrome and things like that. So we were kind of looking around at that and preparing ourselves mentally for, you know, for a Down syndrome child, which was great, you know, we didn't care, yeah, so that that was really our first indication. Then, shortly after that, they had me do an MRI and that was miserable because I was so I my my reflux and and indigestion was so bad that anytime I was laying flat I just felt like I was having a heart attack, and so just the test itself was very difficult and that was when, you know, they had my stomach under the MRI and that's the one that takes like cross sections of whatever they're imaging, so they could kind of see inside and slice it, look at it in slices and, um, little did we know, because that was, that was a miserable time for me, but little did we know they were trying to chase us down after we left, because they said that every time, the because it was very loud is that every time that machine whirred, carly jumped, you know. So almost all of their images were blurred, but they, I guess they had enough to see what was going on and they didn't have us come back and do that again.
Speaker 2:So that's when we got the diagnosis of hydrinencephaly and I know that sounds familiar because you've probably heard of waterhead babies. Right, that's what they're. They're being referred to hydrocephaly, which is very similar. The difference is that a hydrocephaly or waterhead baby, that water from the spinal fluid is constantly moving like it's, it's filling up and and just constantly draining out, and a lot of those kids have to have shunts put in to drain that spinal fluid off. But Carly's was different in the sense that the water that was in her head never moved Like it was. They told us. It was like a placeholder, like it was taking the place of where her brain should have been and it just stayed constant all the time. So there was no need for a shunt to drain it because it was not continuing to fill up. And as far as what caused it, they just they had no idea. They were guessing. I think the one that they wanted to go with was that she possibly had a stroke in utero at about 12 weeks. So that's about the point they said that her brain had developed to, and I think that's where they got that from. But yeah, the prognosis was not good.
Speaker 2:We went to Baptist and every time we went, I remember on our trip down there, it was about an hour long drive down there, and so Tom and I were like all right, what are we praying for this time, you know? Cause we didn't really know, you know, what to expect, what to focus on, and it seemed like every time we went the news was bleaker and you know we were just like oh, this is just no good news, you know. And so I remember one time I was just like let's just play pray for grace, let's just just for grace and mercy, just to get us through this. But, um, the doctor that was that was dealing with us in Baptist didn't have much of a bedside manner and, um, at one point he he said, you know, she's probably not even gonna survive birth, you know she'll, she'll be a vegetable. Um, you know, I really think that you should, should think about aborting it. And he called her an it and I just, oh, that was such such a turnoff for me, oh, and I'm like we will. We will not consider that, you know, and and her name is car Carly, we'd already named her, she has a name and that will not be a course that we will be pursuing.
Speaker 2:And they wanted to set up a birth plan.
Speaker 2:I would deliver at Baptist and then, whenever Carly got here, if she survived birth, they were going to whisk her away and take her to another building where, like the children's hospital was.
Speaker 2:So I wouldn't even get to see her or spend time with her really until, you know, until I had recovered or whatever. So none of that sounded very comforting to either one of us, and so we were like, you know what, if we're, if we are going to have to deal with this as a delivery, we just want it to be at home with a doctor that we trusted and knew and loved. I mean, she had delivered both of my other children, dr Farouk, and she was fantastic. She met us at a park near her house on a Saturday, brought us a vase of flowers that she had grown at her house, and we sat there and cried and talked and came up with a birth plan. You know how we were going to handle Carly and I was just you know, so comforted by the fact that she I knew she cared you know right, yeah, carly was not an it to her exactly exactly, yeah.
Speaker 2:So so that's what we decided to do. And you know she prepared us for the worst. She said you know she's very small. She prepared us for the worst. She said you know she's very small, there's a possibility that she will come out in pieces. I mean, it was just not a pretty picture. So you know God teaches you lessons through that, because I tended to get a little bitter at that point.
Speaker 2:I know you've had two kids, so you understand that when you're pregnant, it seems like everybody around you is pregnant. Like everywhere you go you see somebody else that was pregnant and I just looked at these other women and I'm like something's wrong with my baby and she's going to have a perfect baby. Of course, I didn't know that, but you know how your brain thinks whenever you're going through something like that. But I tell you what God got my attention, um, this one particular time. I remember um he was, he was going to teach me a lesson, because he'd about heard enough of my thoughts along those lines.
Speaker 2:But we were, we were out to eat it was just tom and I the kids weren't with me and um, we were looking over and there was a very young couple. I mean they look like barely high school age and she was pregnant and I was like look, look, how young they are. They can't possibly be good parents. You know they. You know, you know how you judge people. You see judgment of people, right. I was like you know, that's just not fair. That she's gonna have, she's gonna have this perfect baby and there's something wrong with mine. And and then they reached over and they held hands and they prayed before they ate and I was like that was such a lesson for me.
Speaker 2:Oh yeah, yeah. I was like don't stand in judgment of other people just because the situation you're in is not perfect yeah, hey, we've all been there, right, so we've all passed that judgment. Well, that ended those kinds of thoughts, let me tell you, because I had learned my lesson by not you know, judging someone else's situation based on what I was going through. So, yeah.
Speaker 3:So you gave, so the day came.
Speaker 2:Yeah, the day came and you know that was that was really. I mean, I'd been through two other births and and the contrast to between those two and this one was completely different. It was you know how you go, and you've got this happy, excited feeling and we didn't go in with that. We were like, okay, we're just going to make the best of a bad situation. And you know, the plan was that that that if she survived birth, she probably wasn't going to live long and we would just hold her until she died. That that was the plan, right. And we had prepared, you know, jordan and hannah, my, my children for that possibility that we would not be bringing Carly home. And so it was kind of it was a pretty somber occasion, very different from we didn't. We didn't even really prepare very well. They had put me.
Speaker 2:They had put me on bed rest and I was taking like weekly steroid shots and they had been coming to the hospital and hooking me up to machines so that they could monitor her every week. And so for the last, for gosh half of my pregnancy, I was on bedrest and it was pretty depressing to sit around and not be able to do anything. And my parents and Tom, they were just like, okay, we're just going to paint her room, we're just going to paint her room and get it ready, you know, as if she's coming home. And so they just tore into this house while I just sat here and watched everything and um and got ready good, that's what I was gonna ask was about a nursery or yep yep, yep, matter of fact, that's the room I'm in right now.
Speaker 2:So, yeah.
Speaker 2:So, um, yeah, they did that and we didn't. We didn't really have clothes, it was. It's really kind of awful how unprepared we were because we weren't giving God enough credit, you know, I mean he is the God of miracles and we should, we should have known better, um, um, but the same girl that, um, well, let's get to the birth, okay. So so we get carly there and she I mean dr farouk is like you know, this is this may take a while to get her out. No, she just popped right out like nothing, that easiest birth ever, yeah, and and she looked, I mean, you know, she, she had some things going on that looked a little different and we can talk about that if you want to. But I mean, her Apgar score was wonderful, I mean she was doing great.
Speaker 2:But the plan was for them to just wrap her up and hand her to us. And you know, they called in our pastor. We're lutheran and we wanted her to be baptized if at all possible. So he came in and baptized her with water from a dixie cup. So we all kind of had a laugh about that. But, um, he came, he came in a country song, baptized from a dixie cup. At least it wasn't a red solo cup, it was a little it's like one of those little bathroom water cups, yeah, yeah. So, um, he came in and baptized her and you know she just kept hanging around.
Speaker 2:You know she was, she was looking around and new big old eyes and, you know, just seemed very alert. She's very quiet. She didn't make any sounds coming out, not making a whole, but I mean, like I said, her scores were good. They were measuring her every little bit. They're like she's great, you know. And they're like, well, what do you want to do? And I'm like, well, if she's gonna hang around for a little bit, let's clean her up. Can we? And and get the family in here? Because, you know, so they knew she'd been born.
Speaker 2:They brought my parents and my kids in and so they got to see her and she weighed right at four pounds, I want to say three pounds, 14 ounces. I mean she was tiny, yeah, absolutely tiny, and a normal. But she was 40 weeks. I mean they I went full term with her. So, um, you know, usually when a preemie is born, they'll make them stay in the hospital until they reach a certain weight. And, um, I was there for like two or three days and she was good and they basically said well, you know, just take her home and love her. It was the strangest thing. I mean, they didn't expect her to live. They're like she's just take her home. They sent us home with a DNR like a do not resuscitate order, which was awful.
Speaker 2:They wanted us to have that in plain view and I remember that thing was like for a couple of weeks tacked to our refrigerator and I walked by right and after a few I'm like I, I don't want anything to do with that like we um, we um threw that away fairly quickly, but there were some.
Speaker 2:Really, I mean you could see God's hand just from the very beginning of everything, obviously, I mean she stayed, I mean she was, she was good and they sent her home with us. But at the hospital, you know, once you give birth, then it goes to the doctor, the pediatrician doctor, and so they had her in the NICU, um, and I mean they would bring her to us all. I mean we got to keep her in the room a good bit, but, um, there was a doctor that had put together a birth plan, you know that kind of picked up after Dr Farouk was done with me. Then he picked up and he immediately wanted to put a feeding tube in her and we were, you know, pretty much told that that was going to be a permanent fixture.
Speaker 2:I mean like she would need a feeding tube if nothing else. Um, and a nurse that was in the NICU lied to him basically and said um, before you do that, the parents want you to try her on a bottle. And we never had that conversation. I was going to say you never talked to that nurse. No, we never talked to that nurse. She just basically came afterwards and told us what she had done and she's like I hope that's okay with you, that's great, because she latched onto a bottle immediately.
Speaker 3:How much? How was her eating? Was it like a normal child, normal baby?
Speaker 2:Yeah, I mean she ate regularly. I mean, you know, when they sent her home with us, well, they also. Okay, let's back up a minute they also did like a hearing test on her that was based on brain waves, at the hospital before they sent her home, and of course, she failed miserably because with the hydrid encephaly they estimated that she had about 10% of her brain. So she basically they described it to us as like an ice cream cone. She had the brain stem, which was the ice cream, the cone part, and then she had a partial frontal lobe, which is where personality and things like that live. That's where that's that part of your brain. But other than that, it was gone, like 90% of her, it was fluid, it was nothing but a water sack, basically, for the rest of it. And so, um, after we got home, the hospital called back asking whether or not they wanted we wanted them to do that hearing test again, and I said, well, is it the same test that you gave her at the hospitals, based on brain waves? And he said, yes, and I'm like, well, she's going to fail it then, because you know, no brain, no waves.
Speaker 2:So, but I knew, we both knew that she could hear even before she was born, because my husband is a musician and he plays the bass guitar and he played in the contemporary band at our church and other bands. But he loved to play Alison Krauss and he would crank it up and that was the same room in our bedroom where my computer was that I worked on, and so he would crank it up and play his music, alison Krauss, and every time Alison Krauss came on she would just go nuts inside of me just kicking. I knew she could hear and that's the reason why the images were so bad that they took an MRI, because every time that machine whirred she was moving because it was startling her. But we knew for a fact that she could hear because she startled whenever our dog barked oh, yeah, so we knew that was a thing.
Speaker 2:Yeah and uh allison krauth.
Speaker 3:She's like one of my favorites ever. I mean, oh, I know, her voice is so magical and I know she does yeah, and when I taught my first two years straight out of college, I taught in a little town called Waynesboro, georgia. It's right outside of Augusta and it's the height of like of 90s rap and stuff and that's what they were really into. But I would play Alison Krauss and the room would calm and, like those kids, they enjoyed listening to her.
Speaker 2:Oh yeah.
Speaker 3:It was just so funny and I love hearing that Carly would respond to allison.
Speaker 2:Yeah, allison krauss, yeah, and we've since seen her in concert. But I can't think about allison krauss without thinking about carly's reaction yeah, yeah, I understand.
Speaker 3:Um, so you had mentioned some miracles along the way, how God took care of you and Tom. Can you expand a little bit on that?
Speaker 2:yeah, it was just. You know, it was kind of amazing. I'm not a very, and I should be, but I've never been a vocal person about my faith. I mean, I can, I can talk about it, but I don't approach people and talk to strangers about it, like I. Like I know that we're supposed to do, but Carly really didn't give us a choice.
Speaker 2:Um, and that's definitely one thing that Tom and I both learned is that you know, there there are people that are are hungry for, for a miracle, I guess. And you know, every time we talked to somebody about Carly, we talked about what a miracle she was and how she wasn't supposed to be here. But he put people like that nurse in the NICU unit. He put people in our path the whole time that she was there and just some of the strangest things would happen and we would just sit there and look at each other and shake our heads over it. Um, there was another, another nurse while Carly was in the NICU and she would come by on her lunch breaks and pray over all the babies in the NICU unit and I just thought that was the coolest story.
Speaker 2:Um, um, I don't know that we ever met her, we just heard about it, but um, but then we had a ton of specialists that saw Carly and I learned a lot about how the brain is supposed to work when uh, you know, in a baby and and what they're supposed to be able to do, and things that we just take for granted when we have normal children.
Speaker 2:We don't even know it's a thing. Um, I mean, we knew along the way that that there were, there were things that were different about carly, because with the specialists they would, they would tell us things and try to figure out, you know, if, did she have a syndrome? What was it that we were dealing with? And there was never really anything conclusive. But we saw things along the way, like, for instance, they decided that she had something called cortical visual impairment, cvi, and the way that they explained it to us is that it was like carly was looking through a piece of Swiss cheese, so she did not have any peripheral vision and she was only able to see just pockets of the picture that was in front of her. So she had special glasses for that and we went about an hour away to a specialist and they were the ones that diagnosed her and gave her the, the prescription, and we brought it back to our hometown to have it filled at a place called treasures vision, and we had, we had.
Speaker 2:We just knew that she was referred to us because she could do those kinds of glasses. She had that capability and it was just a lady that owned her own her own glasses shop and, um, so we met her and we told her Carly's story and she would not let us pay for those glasses. She gave those glasses to us and they were so funny. They were, um, they were like a hot pink plastic plastic glasses and they we had a band that would hold them on her head, and it was kind of difficult, because one of the little things that Carly had different about her is that she had kind of an underdeveloped looking ear on one side and it was a little lower than it should have been, than it should have been, and so the glasses were a little wonky.
Speaker 2:Anyway, because it was, she didn't really have but one ear in the right place to hold it up for one thing, but she hated those things. As soon as you put them on her face, she would reach her little hand up there and grab them and pull them off. It was a constant battle, yeah, so, um, that that was just one example of someone. Um, we, we would run into people in the stores and Tom was. We decided I mean we could have treated her like, uh, like we needed to cocoon her and wrap her in a little bubble and not let her engage in life at all. Yeah, but we just we just kind of looked at every day with Carly as a gift and so we just, we just took her everywhere.
Speaker 2:Yeah, we wanted, we wanted her to be exposed to as many people as possible, which I know that sounds especially in the age of COVID.
Speaker 3:Yes, how could?
Speaker 2:you expose her to all those germs. But you know we were like.
Speaker 3:You know what she's here, let's, let's let her live as much as possible, especially since she wasn't even supposed to make it past birth Exactly.
Speaker 2:Exactly so we took her everywhere and, tom, we got this little sling. That's the only thing. I mean. It was just like I don't know something. He wore across his shoulders and it was just a sling, I don't know something. He wore across his shoulders and it was just a sling, and she was so tiny and we would just, he would just carry her on his hip that way and she was down in this. You'd open up the folds of this little sling that she was in and one of the things that she didn't do was blink. A lot Occasionally she would blink, but that was one of the reflexes that just that kind of developed over time.
Speaker 2:And, um, so you will, you would look in the in that little sling, and all you saw were these huge eyes staring back at you. And I remember one older gentleman in a store. He was like what have you gotten there? And um tom said well, it's our baby. And he would. He would look down there. He said it looks like a little bush baby. You know how they speak. They go ask what you. Somebody else came it's like what you got in there, a sugar glider? It's like no, it's not a sugar glider, you know. So you know all these people. It was like she was. We said she was a magnet people. Yeah, like what you got in your sling, you know, they would just come up to us to know what was in the pouch.
Speaker 2:So we would tell Carly's story over and over and over again. I remember taking Tom to a doctor's appointment and she was with me and there was this, I don't know, this crusty old gentleman he looked very grumpy that was sitting with us in the waiting room. His wife was there for some reason and it was just Carly and I out there and I have no idea what made him want to do this. But he said can I hold her?
Speaker 2:I'm like sure and she had this ability whenever you were holding her that she had your undivided attention when she never took her eyes off of your face. She loved a person's face there and you should have seen she just like it was like some kind of joy came over this old grumpy guy holding carly because she made him feel so special. And she, she had a habit of taking both of her hands and putting them on the sides of your cheek and holding your face still so that she could look at you, and she was doing that to him and it was the coolest thing. She just, she was just like pure joy.
Speaker 3:She really was all the time, oh my gosh she was so sweet how did it change his demeanor?
Speaker 2:he just he lit up and he was just talking to her and whenever you talked to carly, she was so serious about listening to everything you said and when you talked to her she would smile. Um, she smiled a lot and um, she was never grumpy, never fussy. Um, if you walked by her, like you had her I don't know laying on laying down somewhere while you were doing something, as soon as you walked by, both arms flew straight up in the air like pick me up and it was. It was really hard not to pick her up. She got she got a lot of attention and holding.
Speaker 3:That's for sure. Oh she did, oh she did.
Speaker 2:Yeah.
Speaker 3:So how old was she when she left us?
Speaker 2:So she was two years and four months old and she topped out at 17 pounds. 17 pounds, 17 pounds that's as big as she ever got. Yeah, whenever they sent us home, they also assigned us a hospice nurse. She was fantastic. Tom had just finished EMT training. You know, god works all these little things along the way.
Speaker 2:You look back and you're like, well, that's why, yeah, but it wasn't something he stuck with. He didn't, he didn't like having to make those snap decisions, you know, and just spur of the moment, and so emt was not for him. But that training sure came in handy when we had carly um. There was one point and we'd already thrown thrown the DNR order away long ago. But there was one point where she started like turning blue and we couldn't, we could. It's like she was fading, we couldn't get her back and we called her hospice nurse and she came flying over to our, broke all kinds of speeding laws and everything to get to us, and by the time she got there, you know Tom had gotten her back, and that was the only time that we really came close to losing her until the very end. But, yeah, god, he had Tom, take that EMT training so that he would know how to handle Carly.
Speaker 3:Yeah.
Speaker 2:Yeah.
Speaker 3:So what changed in her health? How did her decline start?
Speaker 2:well, um, you know, we were not exactly sure what caused it. The doctors supposed that what caused it to start with whether it was a stroke or whatever, whatever caused it to happen the first time possibly happened again, and I mean I know I had had a cold, but nothing major, it was right. Um, it was right around Thanksgiving and she stopped eating and she had therapists. She had three therapists that came and did things with her um each week and, um, like they had just fitted her for something they were calling a cloud walker. She didn't have, um, a lot of muscle strength and so she was pretty like a limp kind of like a limp noodle and um, so they had just put her in this thing called a cloud walker that if, if she made any kind of move whatsoever to walk, it would pick up her foot and move it for her. So she had all kinds of nifty little things like that. But so she had only been in that thing like three times and we were really hopeful. You know that this was something that was going to be good for Carly and you know who knows what we would be able to do with her down the road. We were very hopeful of that.
Speaker 2:But she got sick and she just never got better and she stopped eating and she started crying and you know, I was just so afraid that something was hurting in her head, hurting in her head, and the doctor that saw her the whole time that she was anytime like she. She would treat her for a, for an ear infection Anytime that she was fussy because her ears were so small she could not see inside her ear canal. But she just kind of assumed that maybe that's what it was and would treat her that way. And we took her to the doctor twice that week. But her regular doctor that knew her history and had treated her all this time was on vacation and so I mean not that I'm blaming it on that, but but nobody really knew what to do with her and we were just, we felt pretty helpless and she ended up. We ended up taking her to the hospital and I had gone home to get a shower and while I was gone she opened up her eyes and Tom was there and she looked at him and she never opened her eyes again. But she was, she was in a coma, basically, yeah, so it all went back to where it started and they ended up um taking her to baptist and, um, that was right before Christmas.
Speaker 2:So you know, when you're a Christian and you really really want God to work a miracle, it's hard to stop thinking. You know that, oh, you know, all things are possible with him. So we literally had to tell the doctor you've got to tell us when to stop hoping that this is going to get better. And so basically we made a decision on it was December 21st that we were going to take her off life support, because we had seen basically no signs of life ever since that point where she had opened her eyes and looked at Tom. She never came out of that coma-like state and you know. So we had our pastors there and my parents tom's parents were both dead. So, um, we had my parents there and my son was there, my, my daughter is hannah, is the youngest and and she just she didn't want to be there and that was okay. But tom held her and she just peacefully went yeah, like tom said, from from her earthly father's arms to her heavenly father's arms.
Speaker 2:Right, that's exactly right that is exactly right we had uh, we had her funeral on the 23rd, so we had christmas music at her at her um funeral, at her funeral.
Speaker 2:But I'll tell you something else that's always been kind of a mystery to us.
Speaker 2:So my cousin, mitch um, married into a family that is one of the funeral homes in our area and he personally went down that night to get Carly and bring her home for the burial, and we had before she died. We wanted to be able to donate anything that could be used to help another baby of Carly's, and so they were going to I think they were going to try to to get her um heart valves. Maybe I think is what they were trying. But in order to do that they had to have a blood type for her, and so Mitch was there like all night long. It's like he waited for hours and hours for them to turn carly over to him and he said that they came out and told him that they had run her blood sample or whatever, all to labs all up and down the east coast trying to type her blood, and they never could type her blood, which we found to be very strange, they couldn't type her blood and so, um, they couldn't.
Speaker 2:They couldn't use her. You know donations, you know of her body or anything because of that, but we just decided that you can't type angel blood, that's right, you're exactly right, yes and you know, and we called her our christmas angel because she really, you know, she went to heaven for christmas she did.
Speaker 3:I love that, yeah, um, so how old would she be today?
Speaker 2:so she would have been 16 this year yeah I remember when that group of kids because I have have some pictures, you know, in the library around my circulation desk of Carly and inevitably some of the kids that are in there a lot, will ask me who she is, and I remember that group coming through that she would have been in that class and I think that made an impact on them. You know I was like, yeah, she would have been in your class.
Speaker 3:And I think that made an impact on them. You know, I was like, yeah, she would have been in your class. Yes, yes, that's. Jake, that's my son Jake's group.
Speaker 2:Yep, yep, um. So how do you think it affected your two older children? You know they were awesome. We had um, we had prepared them to not have Carly come home, so they, they kind of took the whole, the whole stance that we did that you know, any day with carly is a good day. They never were jealous and heaven knows that for two years she got the bulk of the attention, um, they, they never acted jealous.
Speaker 2:Now, jordan, he was um gosh about. He was, he was seven, so between fifth and seventh grade, while she was there, and so he was just getting interested in gaming and so he spent a considerable amount of time in his room playing games. But he always was just. He always, you know, had fun with her. You know I said earlier that she didn't blink, like hardly ever blinked, and I remember when we brought her home, he um tried to beat her in a staring contest and I thought his eyes were gonna fall out of his head because they were getting. I was like you realize she doesn't blink, you're going to fall out of his head because they were getting. I was like you realize she doesn't blink, you're going to lose this right. So I mean, they always had a had a good deal of time with her, and the funny thing is is that my daughter, hannah, does not like to read, and I'm like, please don't tell anybody, your mother's a librarian.
Speaker 2:Yes, please don't, yeah, but she does not like to read. But that was what she did the most with Carly she um she, uh, would turn the pages.
Speaker 2:Carly would turn the pages for Hannah as Hannah was reading a book, like she'd get the page ready for, and Carly would flip her hand and turn the page. So they did a lot of that. Um, but yeah they, they just enjoyed her she. She was just so sweet. You couldn't get aggravated with Carly, she was just fun to be around. But, as a consequence, both of my children are very much engaged with people with disabilities.
Speaker 2:I mean they have never shied away from them, you know, and they hate the word retarded as much as I do, especially after I explained to them that that their little sister could have been called that. So they're very cognizant of how special needs children are treated with a group. Whenever he was at Appalachian that worked with their special needs kids adults there at Appalachian to help them do drama, so he specifically worked with that special needs group as well as a group at the Green room um theater too, so he always enjoys and tries to incorporate the, the children that have special needs, and um hannah would always, you know, grab, grab kids by the hand that um needed some help.
Speaker 2:She went to special olympics with the kids at our school whenever she was in middle school. She enjoyed doing that, uh-huh. I think it definitely made them more compassionate, yeah.
Speaker 3:I would agree.
Speaker 2:For people with differences.
Speaker 3:Yeah, my mother. So my uncle he was special needs as well and my brother and I. We were fighting as brothers and sisters do, and one of us called the other the R word. Oh yeah and uh, mama, oh, she caught on to both of us and told us we are never allowed to say that word.
Speaker 2:No.
Speaker 3:And that was just something that always stuck with me and I can pass that down to my boys too, because they got to know their uncle Johnny and loved him like I did, and so that is just that's one unacceptable word in my house as well. Oh, yeah, for sure, yeah, so what advice would you give to parents who are coping with the loss of a child?
Speaker 2:You know, I, um, I w, I'm so thankful that we had the time that we did with Carly. I would not trade it for anything. Um, I'm just so glad that we had two years and four months with her. That was such a blessing. Um, you know, and, and I've often thought, you know, I wish she had been, I wish she had been whole. You know, I wish she could have. You know, I wish she had been, I wish she had been whole. You know, I wish she could have stayed with us, I wish she was with us. Now I wonder what kind of person she had.
Speaker 2:So much personality. You know, I have no. Just enjoy every single second. It's so precious, it's so, and if and if you have a perfect child, be so thankful. There's so many little things that can go wrong. I mean, I had no idea until I was facing that myself, but it would have been a very easy thing for me to do to just want to crawl under a rock and die, because that's how I felt. I mean, it's like it's the worst thing to lose. It's just not natural, it's not the order of things. We're supposed to go before our children do, supposed to go before our children do and you know if it hadn't been for our faith and each other.
Speaker 2:You know, tom and I, I don't think it made us stronger and I understand, you know there are a lot of people that that that doesn't happen that way, for that that it it really rocks their relationship. But, um, but tom was my rock, we were, you know, we were each other's and I had two other children that I needed to be there for and I just wasn't going to check out on them. They needed me too and they were also hurting. I think. Gosh, I don't know it's, it's so hard.
Speaker 2:But our faith, I'll tell you, you know, we, the first time we went to church other than the funeral, was Christmas Eve. My kids were with their dad and Tom and I were by ourselves and we debated it Should we go to the candlelight service at 11 o'clock it was at night, real late and should we go? You know it was at night, real late and should we go? And it was kind of like ripping off a band-aid, you know, because church is the part, that is the place where you really should be right when you're going through something like that. But it also is the hardest place to be, because so many people want to love on you and you know they, they know you and it just keeps all those emotions.
Speaker 2:Church is an emotional place anyway, but it just keeps all those things right there on the surface. But I think you know, cling to your faith and your family. Um, god has a plan and he he so used carly while she was here on earth. We just don't know what kind of. I mean she brought more people to faith than than most of us do in a lifetime. I didn't even I mean one. One more story about a person that she affected.
Speaker 2:There was a young guy who was the art teacher at our school, at the, and he had some of the kids paint a mural of a ship with a pirate on it, because we're the pirates in our lobby and it's a beautiful mural and he named it the ship that the pirate was on the Carly B after Carly and I and that was right when Facebook was starting, so I had just gotten on Facebook and that was the easiest way.
Speaker 2:That and caring bridge were the easiest way to keep people updated on Carly, cause everybody wanted to know what was going on and that was the easiest way to let them know.
Speaker 2:And he posted on her caring bridge that that Carly had been the one to bring him to faith because she had been such a miracle. I mean, everybody knew she was not going to make it, we were not going to have her long, if at all, and and she did, and she was such a little miracle and he was like I've never experienced anything like that before. And so for her to have such a profound effect on someone and not even be two years old, I mean that's remarkable. We just don't know what our situation, what the people that are watching us are seeing in us, and how we can be a testimony without even doing anything. You know, you are right, just in how we react and stay strong. And that doesn't mean you don't cry, because heaven knows I cry all the time but, you know, being real and honest and and just leaving yourself open for people to love on you and share your faith and cling, to cling to your faith and yeah, I don't know if that answered your question.
Speaker 3:Oh, it does, Perfect, yeah. So what do you do on those bad days that you still have?
Speaker 2:Oh gosh, you know I, you know I still we talk about Carly all the time. What might have been? You know what she would have been like? You know, we, we think about like. My grandmother died six weeks later and she and Carly were just besties. I mean, she, she also had cancer and so my mom would keep Carly two days a week while Tom was working and they would go down there and she would just lay in the bed with my grandmother and just blah blah, blah, blah blah. You know, just talk, talk, talk talk, just jabber, jabber, jabber.
Speaker 2:And my grandmother was so devastated when Carly died, we made a special trip by there, just like it's okay, it's okay and she. But she went with her six weeks later and I was. That to me was such a comfort. Oh yes, to know that immediately she had her buddy up there with her in heaven, you know, um. So I don't know I still. I mean it's a struggle. I struggle going to the grave. I don't like to think about her there. That's not the way I want to picture her there's. You know, I don't know that it's something you ever get over, but I like to laugh about the good times and remember the fun. You know the, the joyful little kid that she was. I mean she just that's how I get through, I guess is not dwelling on the sadness of it. That doesn't mean it doesn't happen, and I give myself a really, really good cry on her birthday every year.
Speaker 3:Oh, do you yeah. Yeah, on August 13th, that's my day to cry oh yeah, but most of the time, honestly, don't, I try to plan something fun so I'm distracted right but yeah, yeah so I think hobbies are always a good, a good way to deal with any kind of loss or just anything that you're going through you know, stress or whatever so. I want you to tell the audience about your new hobby.
Speaker 2:Okay, so my older kids are grown and gone now and um, Hannah Hannah was my buddy and um she, we moved her to Washington DC in January and I'm like, what am I gonna do with myself and all this time? And and so I took a class over Christmas this past Christmas, just online. And so now I make fancy cookies, I decorate sugar cookies and getting better. And Tom bless his heart. He was like well, I just figured you'd spend more time with me. I'm like, oh sorry, Because I'm just in this room all the time every night and making cookies and it's kept me very busy and it's so much fun and I love being able to do something that makes people happy Making cookies and it's kept me very busy and it's so much fun and I love being able to do something that makes people happy.
Speaker 2:You know, yeah, it's always for something good a birthday or a baby shower or somebody graduating.
Speaker 3:You know, it's just, it's fun and I enjoy the creative process of it, trying to make everything look nice and also taste good yes, they taste wonderful, and you guys should see, like she's so talented all the I don't know just the way she could take this ice and turn it into I don't know what's some of the things you've made stacy. Oh gosh, um the trolls, I the trolls, I love the trolls. Oh, the little gnomes, yeah, I'm sorry. Gnomes, yes, yeah. Yeah.
Speaker 2:I love the gnomes. That was one of the first things I did. You know, I was just I don't know. I tried sewing and I was so bad at it you know so. I and I love to cook, and so, um, and I like to entertain people, and I mean not like entertain them like with singing dancing, but like having people over and feeding them things, and so this was a really good fit for me, and now I just need to retire from teaching so I can do this full time that sounds like a great plan.
Speaker 2:Yeah, trade middle schoolers for cookies there you go yeah hey?
Speaker 3:well, I sure do. Thank you for coming on the show and and opening up and just spending time with us oh yeah, no problem.
Speaker 2:No problem, I enjoy talking about carly it's. I can't do it without a smile, a tear and a smile right, right, exactly, exactly Well, thank you very much.
Speaker 3:Thank you for listening to this episode of Beyond Existing. Many thanks to my guests and also to Crystal Webb and her middle school jazz band for supplying the music when the Saints come marching in. If there's something that you would like to share with me or a topic that you would like to hear discussed, there's a link in the show's description, so just send me a text. Please share the show with friends and family To help grow the podcast, and be sure to follow wherever you listen to podcasts.
