Kasey Carmona | 6 Days of Dying and a Masterpiece of Life
SHOW NOTES SUMMARY:
Warning: This episode contains a mother’s account of her son, CJ’s, final days of life. This may be difficult for some listeners to hear, particularly those who have lost a child.
99 Days. How much life can you squeeze out of 99 precious newborn days? Especially when 84 of those are spent in the hospital?
Kabuki, a major theatrical form in Japan for four centuries, became less of a theatrical experience and more of a grieving one.
Kabuki Syndrome (a rare genetic syndrome), named in part after facial art depicted in Kabuki theatre, expresses itself with distinct facial features including large eyes and long lashes.
CJ would not only fight to stay alive with Kabuki, but due to Kabuki, he was also born with half a heart (hypoplastic left heart syndrome), 3 kidneys, and a cleft palate. The odds were stacked against CJ and his family.
Kasey and her husband did whatever they could for their son. However, when it became clear that they were going to have to have procedures done to CJ, that was their sign that they weren’t honoring CJ’s spirit or his life. They came to accept the truth of their son’s young life and decided to take him home with oxygen support only.
Kasey could have never anticipated that the day they took CJ home on hospice care would be the first day he would truly be living. For six days, they loved as they had never loved. And, they found peace in their sorrow; believing that the gift of CJ’s life was to highlight the abundance in the present moment.
We often torture ourselves with questions we will never know the answer to. And, with odds of .032% of this diagnosis, “Why?” is a question with no answer. Scientifically, it comes down to one tiny missing gene. In the contrast, we can recognize the fragility of life and its magnificence, too.
“Part of living the abundance of life is experiencing loss.”
– Kasey Carmona in a Valentine’s letter to CJ
RESOURCES:
NOT MENTIONED BUT HELPFUL:
- Book, When Children Grieve
- Book, The Grief Recovery Handbook
CONNECT WITH KASEY:
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NEED HELP?
If you or anyone you know is struggling with grief, substance use disorders, or a mental health challenge, free resources are available HERE and HERE.
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CONNECT WITH VICTORIA:
Victoria Volk 0:00
Hi this is Victoria of theunleashedheart.com and you’re listening to grieving voices, a podcast for hurting hearts who desire to be heard or anyone who wants to learn how to better support loved ones experiencing loss. As a 30 plus year griever and advanced Grief Recovery Methods Specialist, I know how badly the conversation around grief needs to change. Through this podcast, I aim to educate grievers and non grievers alike spread hope and inspire compassion towards those hurting. Lastly, by providing my heart with yours. In thid platform, grievers had the opportunity to share their wisdom and stories of loss and resiliency. How about we talk about grief, like we talked about the weather. Let’s get started. Thank you for tuning in to grieving voices. Today, my guest is Kasey Carmona. She is a former performing arts teacher turned full time mom to two boys. When her second son was born with a life threatening critical illness. Kasey was forced to surrender herself and her son into the great big hands of love. Kasey, and her adorable family live in Atlanta, Georgia. Thank you so much for being here.
Kasey Carmona 1:24
Hi, thank you, Victoria, I appreciate it.
Victoria Volk 1:28
And I just off the bat before we started recording, this is a relatively new loss for you. And so so thank you for having the courage because it does take courage to share your story on a platform like this, whether it be mine or anyone else’s. So I honor that courage in you. And I thank you for sharing your story with me and the listeners.
Kasey Carmona 1:51
Oh, thank you. There’s something about this podcast to have grieving voices. The grief journey is long, but necessary, is what I what I share often. And I know I’m new on it. And I’m sure that I know I have a long way to go. But where I am now that I do, I do want to share where I am in this moment, and it will change and then months and years to come. But where I am, feels important too.
Victoria Volk 2:23
So what brings you to grieving voices?
Kasey Carmona 2:25
It’s, It’s love. It’s love my son, CJ. As you shared, he actually his first birthday would be next month. And he was born with a congenital heart disease called hypoplastic left heart syndrome. Essentially, it means that he was growing in me with only half a heart. We thought that that was the worst of it. But the night that he was born, we learned that it was much more. And pretty much every major body system was affected by something months later, we would learn that it was because of a single gene deletion. It was a rare genetic syndrome called Kabuki syndrome that caused a multiple abnormalities in his body. And and I just say like the poor baby had a lot going on. That’s what I always say. And he had a lot going on. And we loved him through it. And we loved we loved every bit of him. And that that’s what brings me here is is I think grief is figuring out what to do with all the love and CJ story is worth being shared. I just told somebody it’s it’s both both CJs life and death were beautiful. But there was so much life in His death. That really is the part that I want to talk about. We did something pretty wild I would say I quickly learned that the best way to love my son in the hospital was to advocate and I I advocated on every little thing if he was crying too much we didn’t need to do a temperature check. Just look at look at him. Oh but but the reason why is because they told me if he cried for longer than five minutes it was bad because because he only had half a heart right and so so we couldn’t have him even cry. He’s a baby though babies cry like but the the the amount of suffering that we saw In the hospital, CJ, at three days of life had a 10 hour open heart reconstructive surgery three day old. He was on ECMO, the heart were the machine that pumps your heart for you for longer than most babies. But he just never quite recovered from that surgery. And it’s because of so many things. He had three kidneys, he had a cleft palate, so he wasn’t able to take feeds. But even still, because of Kabuki, he created so much mucus that he wasn’t able to even swallow anything into his stomach, everything went into his intestines. What we had to put a tube into his intestines. Later, it wasn’t until we made a pretty critical choice that I’ll tell you about. We learned that his his brain nor his body grew, I knew he was having trouble gaining weight, but I didn’t realize his brain never grew. And just think about what that the implications of that especially we know that children’s brains have to grow and unfussy. Essentially, as I started advocating of my child needs this, my son needs this, we’re going to do every test every scan with him in my arms, because he cries, if you if you are trying to poke and prod and get what you need, and you’re gonna get a better reading with me holding him, you’ve never done it before. Well, first time for everything, you know, like, we just I did everything that I could. And in early May, we got the diagnosis of Kabuki syndrome, and that that syndrome on top of his severity of hypoplastic, left heart syndrome. It just, it just didn’t. It didn’t sit well with my husband and myself. At that point, we had seen so much in the hospital, and so much suffering, that it was hard for us to, to imagine this to keep going. And at some point, and this is a wild thing for a parent to say and I hope no parent makes this choice. But I believe that there are parents out there that question it at some point, death is better than suffering.
Kasey Carmona 2:27
And that’s a good that’s a really challenging thing to say out loud as a parent to decide that the hope heaven offers will be so much better for my son than what we’re doing to him here. And essentially, we had already been working with the palliative care team at the hospital and the Children’s Hospital. We were at Children’s Healthcare of Atlanta, Eggleston and the team is fantastic. They they are wonderful people. There was a doctor that CJ had a really bad episode I learned later it was his first death contraction. And the cardiologist that was on staff just didn’t know what to do. cardiologists switched out every week, the new cardiologist came in and she said, Listen, I don’t know what to tell you. I don’t know what to do, I guess. But we need to do something. So I guess we’ll intubate him and put him under for a Cath. And we’ll do that procedure. And the language that the PACT team gave us was, we will do things for our son CJ, but we will not do things to our son. And when that doctor said, I don’t know what else to do. So let’s do this. That that was the red flag of we’re doing something to him, not necessarily for him. And and so we worked with the Pac’s team, and we brought in hospice care. And we said we’re done. i We advocated so strongly, we said we’re bringing this baby home on pediatric hospice care. And let me just tell you, for our family, obviously, the hardest, most tragic decision a family could ever make. But it was so beautiful, because our son came home. And I also have Teddy, who at the time was only 1415 months old. And so CJ got to be with Teddy. And they they were pretty much together while CJ was in utero. I mean, it was so sweet the boys. Teddy would climb on my tummy and CJ would kick and like the the boys had this connection, but then to come home and to watch it play out was was just so beautiful. And for us Even though my son was at home to die, court and I believe that CJ is life started when he came home, he spent 84 days in the hospital. But those were the days of suffering. There was a freedom that happened when he came home. And it was so beautiful. I mean, the things that as mothers, we might take for granted with healthy children, just, just even, just even being able to take a walk outside. He at this point, he was still hooked up to his life supports. But I wasn’t able to do that in the hospital, he was connected to a wall. Or because of COVID Our family wasn’t able to see him. And so within two days of him bringing, bringing brought home, we had people come from Florida to California, to Atlanta, Georgia, to say hello to our son. And we had this beautiful welcome home party and we had food and we had ice cream cake and and all the cousins were there. And
Kaseu Carmona 11:18
Everybody got to say hello. And one of the most incredible gifts that somebody gave us was a photographer and she just sat in a corner and took these beautiful candids of CJ. And his it was really the family that came to support us. Not not all of our aunts and uncles were able to make it but but those that came to support us while CJ was in the hospital, we invited back and and most of those weren’t able to meet him. So so they were able to meet him for the first time. And it was it was raining that day. But but I just remember it being so bright like i We live in a 1920s school house. And we have these beautiful 10 foot windows and we just sat we put we put the baby recliner and rocker right by the window and I don’t remember raining I just remember it feeling so beautiful and so lovely and so warm in the house that day. And it just felt so good for us all to be together. I think that this is a familiar feeling. For those that are have loved ones at hospice or loved ones that are going to die or have died. There definitely was a sense of denial. Probably the first time that experienced denial. I mean, because my baby was home like for the for the first time he was home, like how great and I just thought things. How could things go wrong? You know, I mean, this is everything that you could have hoped for granted. He was he was a sick, he was a sick baby. He was a sick baby and it just didn’t feel like that cash. My hospice nurse her name is Lenny’s short talent she she’s also a grief educator and she she is one of those angels on earth. I mean just just a walking saint who just who just tears a woman so close and dear to my heart. And she kept saying where are the giraffe where the giraffes that are looking ahead and there was one day where she she had to look ahead and say all right, I think CJ took a took a bit of a turn. At this point we were only a weekend to our time on hospice and CT was at work I told CT to come home and at that point we we made plans we did a family photo shoot and and we got all dressed up and all my boys are in white shirts and I borrowed a dress from a girlfriend that was gorgeous and I had a friend come and she did my hair and makeup for me so I felt really good and that was such a weird day because I was like I can’t I I’m spending time getting ready and feeling pretty well. I only have minutes left with my son I only have moments left I only have hours left I only have days left like this This feels so weird and and the photographer that took the candid photos Her name is Joy she came back she she was so kindly came back to take these photos and both joy and my dear friend Emily were there and they just were like know what this is you’ll want these for the rest of your life take take the 30 minutes you’re okay you’re still a good mom to put some makeup on and you know put a comb through your hair. But I but I do remember that of like, this feels very vain to me and I actually today my son Teddy went to go point at one of the photos that we took from that day and and I did just think to myself today and this is a vain thought but but but goes along with what I’m saying here of like, gosh, I looked so pretty that day and And I’m just so grateful for other people to speak in and say, take a moment for yourself here and it’s okay. Anyways, we took these photos and they are they, they represent they represent so much of the life that CJ had and their smiling faces and my son he looks so beautiful, he’s his cheeks are full and he’s got his little curly hair because we I wet it before we took the photo so those hair had those perfect black ringlets and, and we, we took photos throughout our beautiful property that we live on and and it was a good morning. It took a nap after because it was a it was tiring. And then after CJs nap, something changed. And it’s it’s a little too painful to even go into it all and I won’t because of the trauma that is still there. But I will say that the hospice team came in and essentially said today’s the day Today’s the day it’s time to take your son off life support.
Kasey Carmona 16:13
It’s time to take them off for CJ it was oxygen and he had that NG tube so I was was exclusively pumping which is amazing. So my breast milk was going straight to his intestines. And and this is This to me is where life and death are on this wonderful continuum. And sometimes it’s hard to see it as a black and white thing. Because this this is really where we started to see all that we can do and CJ is life when you know you have at this point minutes hours left. So what you do what you do when you have one potentially one last night with the person that you love and for us we we made a family masterpiece we got out the paint we got out a big a big canvas board we went outside it was May and it was gorgeous. And we we put different colored paints on on a piece of paper or I think it was a paper plate my son Teddy had blue paint I had the green paint court had gray and little CJ had read and we just stamped with our feet on this canvas and together we made we made our family masterpiece it’s the most beautiful thing hanging up in our home because it’s the thing that we can point to and say we were all together this is the time of our life where we all shared we were all present This Is us This Is us This is where love combined it was
Kasey Carmona 18:27
A beautiful moment we have a meal together and and and then that’s when we that’s when we
Kasey Carmona 18:50
We put Teddy to sleep we brought we had Teddy kisses brother Good night and and then we we took CJ off of his life supports
Kasey Carmona 19:04
That night was was the dark night. You You don’t want to go to sleep because you don’t know what’s gonna happen.
Kasey Carmona 19:17
My husband laid on one side of the bed I laid in the other and CJ was it a one of those? swaddle me it’s like a little a little baby nest. He’s sleeping right next to us. And you know, you just put your head right next to his and and you keep your eyes open even though they’re they’re fluttering shut. You just gotta stay awake, but at some point you can’t. And so so we fell asleep. That next morning, Miracle miracles that baby was still alive. He was still alive. We couldn’t believe it. Um, but At this point he he wasn’t looking good, right? Like, I mean, sweet boy. It was It was wild and, and His breathing was so shallow and and it was hard that that morning we courts aren’t Auntie Helen, Teddy and CJ called her OMA OMO was living with us. And we had OMA take Teddy, we just were like Teddy needs to. You guys can’t see this. This is too, too sad to dark. We stayed actually, in this bedroom right here and too much. Hospice finally came, I mean, talk about an intimate moment. For your hospice doctor and Lenny’s the hospice nurse. That’s the angel to sit on your bed with you and your dying son. That is intimate. And, and they said, Yeah, it’s it’s tonight. It’s tonight. And I just at that point was like, I if you don’t realize that death is going to be so difficult. And so I’m like, you just want him to die as fast as possible at that point. And it was just so hard to watch. A breath, no breath. I mean, it was wild. It was wild. And, and Looney said, I know you want to protect Teddy on this. But I just think Teddy needs his brother, CJ. And CJ needs his brother Teddy. And I think Teddy needs to say another goodbye. And I think they need to be together. I was like how do you let a little baby see this? How do you let a baby see this? This is gonna be wild. But But I believe it. I believe it. I hear you. I believe it. And so. So we call back Oman said come back. We all need to be together. We need to be together. And but we kept CJ in the back room. At that point, CT and I had said our goodbyes. We had made our peace. We had sang songs. CT is an incredibly musician. So brought out the guitar play the piano. I mean, we were doing I had read oversee Jay, I mean, just we set our prayers. I mean just had done everything. So we made our peace. And oh my God came and made her peace to we go to bed that night. Same thing of like, you don’t want to go to bed. But at some point you do. And the next morning this baby was still alive.
Kasey Carmona 22:52
And so I told court I said Thursday that Thursday was CJ is what I call his dying day where he’s we had him in the back room. But we’re not going to do that anymore. Like it’s too sad. It’s not our son, our son is a child of life and love. And so we brought him out into the living room. And this, this is where life and death swirled in my living room. And I am here to tell you this is where CJ is life was absolutely beautiful because at this point, we really didn’t know if every breath was going to be his last and so we really cherished every minute and because he was off his oxygen support. This is where we got to have fun. So we we put both boys and strollers and we went outside and did stroller races. And we we had Teddy push his brother around in a stroller because that’s what you do with a normal baby. And we got out the kiddie pool and we see Jay wasn’t going to be able to be in a pool but but he was able to watch his brother be in a pool and splash around and and we were able to have dance parties where wires didn’t get in the way. And court was able to hold CJ without the wires and play piano with one hand. And we were able to bring CJ in to the bathroom for for bath time and just all the really wonderful normal stuff that once again moms and young moms and dads take for granted or get frustrated because they have multiple children in here. We were so grateful. For every moment that we were we would hold CJ and Teddy would coming climb into our laps to give CJ kisses on the forehead and and this is this is heaven on earth. This is heaven on earth. I’ve experienced it I’ve lived it. My son is live that my son loved it so much that he was he we were told he was going to go Friday, but he didn’t go on Friday. He didn’t go on Saturday. He didn’t die on Sunday. He didn’t die on Monday. We had these and total six days of glorious life. And but it was wild. My son’s organs started shutting down. And and he would he was smelling he was decaying. He rigor mortis, set it on his tongue. I mean, like it was, you’re holding, you’re holding a mostly dead baby, I joked around. I’m a big fan of The Princess Bride. And there’s the scene where where the man and Black is dead. And Billy Crystal says you thought he was dead, but he’s only mostly dead. And my son was only mostly dead. Because there was a part of him that just kept living. He was only taking two breaths every five minutes. And he did that for six days. Because we had set our peace, because we were in this fullness and richness of life and death. That anxiety that I think we feel, I think it’s natural to feel when a loved one is going to die is dying. I didn’t experience it because I was so focused on the present. And that is what the present can do for us is that when we’re so focused on the present moment, and the life that we have in that present moment, it’s just like, everything goes away, everything goes away. And that is a gift that we we do not have to have somebody who is dying to tap into. But but it does take practice to be present. And it is one of the gifts that my son has given me. Tuesday morning came along, and then the energy changed. The energy changed it, it. It felt like that was the day. It felt like we were kind of living on this bonus time. And and it was it was finally time and I did something that I hadn’t done before. And when CJ was growing on me, I felt this compelling sense to journal. And that morning, I read through essentially these love letters to my son.
Kasey Carmona 28:00
It took an hour. But I read every single one to him chronicling out the love that I’ve had from him since really, the beginning but But I started the journal, I got his diagnosis at 22 weeks, and I just wanted him to know like, I have loved you. I do love you and I will always love you. And if there’s one thing that I’m for sure of, I have to have faith that there’s a heaven I have to have faith that I’ll see my son but I do know without without a doubt that love never ends. And wherever my sin is now he is in love. He’s in the hands of love. And that I know that I know cuz I was his hands of love. And then I let it go. And my son finally did take his last breath. It was Tuesday May 25. It had all worked out. We had just just put Teddy down for his nap. He got to say goodnight to his brother. And just 1020 minutes after that. CJ did take his last breath you know I said this earlier in the podcast Your love has to go somewhere. And a love for my son was was so selfless. so vast, so deep. It kept it kept going and going. And it’s something that I I’m not sure I can take credit for i i believe If that the source of love for me, that’s God was the great well, that sprung up on a moment by moment basis for me to get out of myself. And to truly, but everything I have into the life and the death of my son. And so now I’m, I’m coming to terms with with what I did. And that’s a process in itself. And it’s a good one. It’s a good one. But it is long. And at times difficult. It’s one that I, I don’t regret, and I would do over and over again to
Victoria Volk 30:53
Y’all can’t see me. But I have been crying this whole time. So sorry,
Kasey Carmona 31:03
Thank you. It’s tragic. But every death is tragic. It’s all tragic. Every loss is tragic.
Victoria Volk 31:10
So tragic. Highlight something you said. But I gotta grab more tissues.
Victoria Volk 31:27
It takes, It takes courage to share your story. But it takes courage to face death, but embracing it not shutting it in the back room. And if there’s anyone listening to this right now, there is such a gift in facing and embracing death in an opportunity that could be missed when you shut it out. And if there’s anything that my death doula training taught me, and in watching my own father die, is that giving yourself and your loved ones, like little boy, the opportunity to grieve with you, that was such a gift you gave him? So I’m so glad that you had that mentor there in that guide to share that with you because that is a moment. And people might say he won’t remember that. He will. And I will say that he will.
Kasey Carmona 32:30
Okay, well, I will I it’s gonna live in his body. And I’ve sweet Teddy struggled a lot this summer. So did I Right. And, and there’s there’s organizations here in Atlanta, Georgia, that we’ve already tapped into, and his pediatrician knows the story and will watch Teddy for his whole life. And because I it was a beautiful death, he still saw death at a young age, but, but to your point, my hope is that it’s not a scary thing, that that’s so many of us believe it to be. And rightfully so. I mean, there are aspects of it that are scary, but but by embracing CJs death, we recreated this beautiful death. And I, I there was so much life and his death. But but that was CJ like CJ just kept saying, like, he brought the life and so
Victoria Volk 33:39
You answered his call. It was like, coming to look at these legacy projects and end of life doula training, when we’d work with a family, on hospice, it’s the idea of involving the whole family to create a legacy project. That’s what you’ve done. That’s what you did. And you have this beautiful Memento and kudos to that for that friend who got the photographer. I used to be a photographer, Julie now what a gift what a thoughtful gift. So if you are listening to this, and you’re like, I don’t know what to do, I don’t know how to help you. You’re listening to ideas today, like hear this? You know? This wasn’t the first loss for you. Was it? No. It wasn’t the last. So what has that experience? What has CJ taught you about grief? And about life and you know that
Kasey Carmona 34:44
It is I’ve allowed myself to feel every single thing I need to feel if something bubbles up. I don’t push it down. I don’t say I’ll get to it later. I just let it come Lenny’s the grief Decatur shared emotion is you gotta move it through. And so I, I am choosing to move it all through. And so I, I am grateful for those that are willing to sit in the side with me. But also, we can have some good moments together. And I think learning about learning about my own grief, I am somebody who’s pretty external. And so writing has been helpful, talk therapy has been helpful. Sharing CJ story has been helpful. These things have have really given me insight, more insight into to who I am, and, and also but, but how how see Jay’s life has affected more people than what I realize. And yeah, I think before CJ was born, it was Valentine’s Day, and I wrote a letter to him. And there’s a line in that letter that I’ve been thinking about a lot recently. And I wrote, part of living, the abundance of life is experiencing loss. We choose to tap into that abundant life. And that’s it. That’s just the thing. It’s abundant. And when it’s growing, and it’s so much and it’s so full, of course, of course there’s going to be loss for me was how quickly did I accept that loss is for me, I’ve learned the sooner that I can accept a loss, the faster I can get on with the grieving process. That’s that’s how it has worked for me. And because when you wrestle with the why, when you wrestle with some of these existential questions that you might not ever get answers, I found you’re just delaying the inevitable of the accepting. And then this healing process can begin. When we realize when we choosing to tap into this abundant life, there’s going to be loss, but loss, a loss is always going to be hard. But because something is hard, doesn’t mean that it has to be bad, there can be good, doesn’t mean that it is good, but there can be good in it. And that’s a perspective, that’s a choice to make. It is not good that I lost my son, that is tragic. And it is so sad. But we found good in the loss. And I think it’s because we accepted what was happening. And it allowed us the freedom to just be present and to feel all the fields. And at that moment when my those six days while my son was mostly dead. I will I will say I buried everything pretty deep. But I but I purposely did that because I I wanted my son to have the absolute best. And and I think that’s also something that we do as mothers we, we regulate, we choose when when to be vulnerable, and when to show what we need to show and that wasn’t the right time. And I’m proud of that choice. I’m proud that I made that choice. But now as Teddy is watching me grieve, he watches me cry. And he watches me struggle. And I just say mommy sad I missed your brother, because I want him to know I want him to know that. This is part of living the abundant life that we’re in court and i weakly say, we have such a good life. I think that there’s probably people out there that would say Woe is me. And I hate to say to you, but there’s still so much good out there that you just have eyes to see it. A heart to believe it. I think that’s what grief has taught me more than anything else is that there’s still so much good despite the hard
Victoria Volk 39:28
What kind of question says Teddy asked are things that he well,
Kasey Carmona 39:35
Yeah, not too many. He’s he’s going to be too. Oh, gosh, this month. So so he’s, he hasn’t really asked questions, but he’ll point he’ll point to CJ a lot. We have pictures of him up and we have our masterpiece painting hanging up and so he’ll point to that every night before we go. As we talk to Teddy n, as we say, nightie night and we love you, we go like this, we put our hand over our hearts and we say CJ is in our hearts. So if you if you asked Teddy where CJ he would go like this, he’d put his hand over his heart. And I’m sure the time will come will he’ll start asking Lenny’s suggested the book, the invisible string. And so we read that regularly. And there’s a part where it says, There talks about the uncle in heaven, and we, we say, CJ and heaven. And so we are an open family about it, and I am. I’m really thankful for that. And I use the D word I use die. Because I also think that’s important too, especially for, for sweet Teddy, who, you know, children take things so literally, and so if we, if we use certain language, I want Teddy to, to not be afraid of sleeping or loss, but but knowing like this is this is death.
Victoria Volk 41:09
Well, and not only that, but if you don’t share the truth, they make up their own stories. And as they will make up their own stories, wow. So it’s very important that you be honest and truthful, to the, to the extent that in language they can understand at the time.
Kasey Carmona 41:35
Okay, that’s good to know,
Victoria Volk 41:37
What gives you the most hope for the future?
Kasey Carmona 41:41
I’ve been feeling that the spirit of CJ is the spirit of generosity. And his life gave so much to so many. And I hope that we can be generous with the help of our friends and family and do some kind deeds, especially for the Children’s Hospital here in Atlanta, and memory and an honor CJ, that that gives me hope.
Victoria Volk 42:09
Do you want to share a little bit about because for those that may not be familiar with Kabuki because I’m not right, is that what?
Kasey Carmona 42:16
Yeah, commemorate, yes.
Victoria Volk 42:19
How rare is it? Is it genetic?
Kasey Carmona 42:22
It’s a genetic syndrome. Yes. And it, it’s genetic syndrome. It was de novo. And CJ, which means new to him. However, if somebody does have Kabuki syndrome, and maybe it’s a mild case, they don’t realize it, that it can of course be passed along. It is very rare. It’s, I think, point zero 32% chance of a child getting it and it was a fluke accident. I was it was unlucky as what doctors say. And it caused this one genetic gene deletion caused a slew of issues in my son, and it’s just wild to think about one tiny gene was missing. And it just, it just makes you pause and reflect on the miracle of humans, childbirth, babies. I mean, there’s just so much like, gosh, so anyways, the the syndrome itself, it’s called Kabuki because the children typically have these big eyes that kind of are slanted a little bit. And these big, beautiful eyelashes, and it was named from Japanese doctors who thought these children looked like an art form a theater form in Japan called Kabuki and so it’s named after this, this theater tradition that the traditional makeup is big eyes and big eyelashes. And so, so CJ had the big eyelashes. But actually, it’s a it’s a Carmilla future too. So that’s so funny. There was so much we were like, is that Carmona or, or is it just Kabuki you know? It’s hard to hard to know. Anyways. So it is very rare. And one of the things that helped us make our decision is in literature and medical literature. The cardiologist that also dealt with genetics could only find 12 cases and all of medical literature history of children that had both hypoplastic left heart syndrome and kabuki 12. I’m sure there’s more out there. But but only 12 had been written up, the odds were not good for us it was. It was essentially, five, did what we’ve ultimately chose to do. And said, We’re done with palliative care surgeries. Seven, did not live. And then three tried to do the next round of surgery, but but also the end, I guess, had lived but maybe didn’t live up until, like eight. And so that that helped inform our decision. And because it was just so rare for the to Kabuki syndrome can cause heart defects. But hypoplastic left heart syndrome is the most I know most is it is one of the top in severity of, of heart defects. And so that that is kind of the mack daddy of the mall. For this case of a genetic abnormality of the heart. And anyways, so. So there are several families out there, I’m in a kabuki parent support group, there are several families out there that that have children that are, are
Kasey Carmona 46:38
That are doing as well as they can with Kabuki I, I personally look at those families. And I see how hard it is. And that there is a part of me that, that is grateful that we did not keep our son alive, just to keep him alive. That is a very difficult statement. And I know that is incredibly controversial. And it’s just for our family, we chose quality over quantity. And I think the hospital would have kept CJ Alive for a long time. And I look at some of these children. And you know, CJ wasn’t having seizures just quite yet. But the seizures, we’re going to start and there’s just so hard, I just and you know, he would never be able to eat. I mean, just like, and with his brain not growing. He, he would obviously have some severe challenges to do any normal, quote unquote, normal, functioning. thing. So yeah, i My heart goes out to those families. Because it is it is a it’s so hard, and it’s worthwhile. But it’s worthwhile. Like it’s so it’s beautiful. And it’s I know that they’re doing the best that they can. And there’s this like, there’s just I think, I think for me, it’s just hard to watch children suffer. It’s just hard to watch children suffer.
Victoria Volk 48:16
Dr. Chris Kerr was on my podcast a while back and he’s a hospice doctor, physician and has researched and have life experience when those in hospice care and he was talked very openly about how medical community medicalize dying, and how society overall medicalized is dying. So that made me think of you sharing that. And I had that question in my thought in my mind, and you went right to it in and in your story, and ultimately ended up bringing them home, to have a good death, really. And that’s what he talked about in that episode in how, again, there are opportunities to really embrace that process rather than medicalizing it and having an experience of separation. And, like you said, denial, trying to throw everything but the kitchen sink at something that is inevitable. In the medical field, too. It’s like you’re not supposed to do harm. And I think as human beings, the spirit within us, it’s really hard to ask ourselves in those moments, like what would I want? And then do that for your loved one. Right? Yeah. So what would you like to scream to the world? You got a microphone and had
Kasey Carmona 49:45
Oh, man, I think you just said it. For me. It’s, it’s if you are in a place where just things are not going right. And you can see the writing on the wall, no one told us to bring that baby home No one, no one in the hospital told us to do that. It’s what we felt CJ needed to have that beautiful death. And because we were tired of throwing everything but the kitchen sink at at my son’s life and not getting anywhere, and then just seeing him more, more hurt, more poked and prodded and tested and, and our 15 days at home, were so beautiful. And I, I wish, if there are families that, that are wanting that or thinking that they can do that, too, but But it requires acceptance of really what’s coming, it requires a good team around you that you can trust and talk through. I mean, for us that palliative care team at the hospital was really important. And and it requires this very selfless love, to put all your feelings on hold, and to give trusting that deep well is going to supply what you need. And it will, that’s what love does. So I I really, I really hope that there are there are people out there that that might be afraid of death or afraid of the inevitable or, or afraid of what’s to come. But I’m practicing the present and being joyful in the moment because that is what we have right now. There is beauty. And there is good. And the now is all we have really to embrace it fully. Is that abundance of life.
Victoria Volk 51:45
Beautiful message. Is there anything else that you would like to share about any other losses that you’ve had been shaped by this experience? Maybe that were different or anything about CJ, you’d like to share? Anything?
Kasey Carmona 52:07
You know, I think for today, I think this is what I needed to share for today. Yeah. Thank you. Thank you.
Victoria Volk 52:17
Thank you for sharing, beautiful story of life and loss of CJ. But as you shared, he lives on in your hearts, and no one can ever take that. Again. Thank you so much for sharing your story today. I think it might need to take a walk and be in the present moment for a little while. You beautiful shares. Thank you so much. And where can people reach you if they would like to find me? Yeah, well, you connect.
Kasey Carmona 52:54
I I’m on Instagram right now. It’s just my first and last name and are on Facebook to its Kasey Carmona. Both of those would be great.
Victoria Volk 53:06
Okay, I will put the link in the show notes. Okay. Thanks. And remember, when you unleash your heart, you unleash your life. Much love. From my heart to yours. Thank you for listening. If you liked this episode, please share it because sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting know that what you’re feeling is normal and natural. Much love my friend.