The Caregiving Soul:

Surviving the Traumatic Journey of Caring For and Losing a Chronically Ill Child

Hosted by Dannelle LeBlanc, September 19, 2022


Dannelle speaks with Shirley Riga about surviving a traumatic journey caring for a child with chronic illness. You’ll learn about some of the helpful strategies and tools she learned to manage fear and anxiety while dealing with uncertainty and loss.

“I’ve learned a lot. That’s why I call my daughter my teacher. I didn’t know I was in a classroom. I had no idea, but what I have learned about myself continues to grow.” – Shirley Riga



  • 02:37 Shirley’s 3 core values and how they relate to her life and caregiving experience 
  • 03:25 How Shirley’s core values have changed over time 
  • 06:01 Shirley’s experience when she first learned of her daughter’s diagnosis 
  • 10:34 Shirley’s coping tools for grief 
  • 12:57 Square breathing and other techniques Shirley learned in therapy 
  • 15:51 Scripts Shirley used for discussing how she and her daughter were doing with acquaintances 
  • 19:31 More tools that helped Shirley 
  • 23:23 Reparenting ourselves to better support ourselves 
  • 25:48 What Shirley is passionate about outside of caregiving

Actionable Tips

  1. We all deserve love. Even if we don’t feel that we’re receiving it from an external force, we can give it to ourselves. Consider writing yourself a letter to create a reminder about how much you love yourself, and then read it out loud.

  2. When life and death is at stake, it’s no wonder we worry about what’s going to happen. When we stay grounded in the present, we’re more open to see what’s possible in the moment. Try touching your nose and saying, “I am right here” or have sticky notes around your space that say, “I am in the present”.

  3. Plan and enforce boundaries to create emotional safety and protect our hearts and mental wellbeing. We’re our own best advocates to determine what that looks like.

  4. When we’re caught up in a stressful moment, consider some of the coping strategies Shirley mentions including square breathing, passing a coin from hand to hand, or self-massage

Resources Mentioned in the Episode

Additional Resources

About Shirley Riga

Shirley Riga is the author of two books focused on surviving and thriving as a caregiver while living with daughter’s chronic illness. An advocate for self-care and a teacher of meditation, Riga is a Certified Psychosynthesis Counselor, a Spiritual Director and a Psychic Medium.  Riga came to this work after a lifetime of intense challenges –alcoholic family home, childhood abuse, toxic relationships, chronic illness, and the death of her spouse and her daughter. She struggled with poor self-esteem, immobilizing fear, and lack of a belief in a Higher Power.  She learned to turn around challenges into lessons and tools, rebuilding herself while witnessing the firsthand positive changes rippling down to her children. Riga works with clients and groups as a coach, motivational teacher and trance healer sharing the process of finding empowerment through adversity. 


[00:00:00] [Music]  

[00:00:06] Shirley: I’ve learned a lot. That’s why I call my daughter my teacher. I didn’t know I was in a classroom. I had no idea, but what I have learned about myself continues to grow. 

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[00:00:21] Dannelle (Recorded): Hello and welcome to The Caregiving Soul! The Caregiving Soul podcast is a series of conversations about what it’s like to care for loved ones in need and how we can better navigate the relationship and the physical, emotional, and logistical complications we encounter as partners in care.  

[00:00:44] I’m your host, Dannelle LeBlanc. 

[00:00:49] [Music Ends] 

[00:00:49] Today we are speaking with Shirley Riga about surviving a traumatic journey caring for a child with chronic illness. Shirley’s youngest daughter was diagnosed with kidney disease at birth, a devastating discovery no parent is ever prepared for. Over time the experience taught her how to transform extreme medical, emotional, and everyday challenges into lessons and tools that helped her to cope rebuilding herself and the kind of relationships she wanted with her children in the midst of fear. 

[00:01:28] Currently Shirley works with clients and groups as a coach, motivational teacher, and trance healer sharing the process of finding empowerment through adversity. She’s also authored two books on her story and expertise. Shirley’s hard-earned experience of care for her daughter and the strategies she learned to manage fear and anxiety are not only helpful for care partners, but anyone dealing with the stressors of life. 

[00:01:57] As a supporter of Shirley’s work, I’ve learned and used several very effective tips from her to center myself in demanding situations. I’m hopeful that some of the tools she shares in this episode resonate with you and can be easily added to your wellness routine.  

[00:02:16] [Music] 

[00:02:17] Welcome to Shirley Riga! 

[00:02:22] [Music Ends] 

[00:02:22] Dannelle: Hi, Shirley, how are you? Welcome to The Caregiving Soul. I’m so glad to have the opportunity to talk with you more about your perspective. Would you share a little bit about what your three core values are as it relates to your caregiving experience and life in general?  

[00:02:49] Shirley: They have changed over time. But with all this caregiving experience that I had, which was over 30 years, probably my three core values are honesty with myself, and doing my utmost of what I can do for my loved one, without taking away from myself too much, and being respectful to everyone involved, even though it can be trying at times when people aren’t very nice.  

[00:03:17] Dannelle: That’s an excellent answer, given that it’s off the cuff. And it’s interesting that you say that your core values have changed over time. What is it that has influenced the changes over time? 

[00:03:31] Shirley: Well, I am post my daughter’s passing. And so, I’ve had a lot of time to reflect on how much I gave myself away while she was alive, watching others doing the same and not even being aware of it because they are so afraid, and they’re caught up in a system that’s not supportive. They’re stressed out, so they’re not even in touch with tools that can help them. 

[00:04:01] My daughter was born with liver disease and so caregiving really began, even though I was parenting her, it was all very stressful. And she lived for 32 years. And it was during, probably when she was around 10 or so, and I was journaling that I started realizing there are things that I am doing that may not help me. And how can I change them? Because this clearly is not going away. 

[00:04:26] And so, I started recognizing tools that I could implement to help me. And so those kind of evolved as I lived my life with her and my other well daughter. And so, my values became a little more honed as I got better at recognizing the traps that I would fall into because I lost my focus and screamed at her, and everybody’s stressed out, not realizing that I could have stepped back sooner and got a little more control of myself so that fear doesn’t overtake me. That’s one example. As I live my life now… Well, I don’t know if you wanna go there.  

[00:05:01] Dannelle: We wanna go there.  

[00:05:03] Shirley: [Laughs] Okay. Peace of mind is like an utmost value that I strive for every day. And it’s pretty hard to do in grief. It’s hard to do in this chaotic world of so much happening. Grief abounds everywhere. I still use some tools and I have added new ones and I have refined the ones to go deeper within because I now have had time to be more reflective and have a much better practice of mindfulness so that I can be much more closer to myself instead of running away from myself like I did for years. 

[00:05:42] Dannelle: Yea, which is tied to being honest with yourself, as you describe being one of your core values. I’d love to introduce our audience to some of your tools for the caregiver, for the exceptional parent of a chronically ill child. But I just want to, if you wouldn’t mind sharing your daughter’s first names with us. 

[00:06:08] Shirley: Well, I wrote a book and her name in the book is Lisa. And even though that’s not her first name, it’s the name I use because it allows me to talk about it without choking up. So we’ll go by Lisa, if you don’t mind.  

[00:06:21] Dannelle: Yes, absolutely. Shirley, when you first found out about Lisa’s diagnosis, which she was born with liver disease. Can you share a little bit about what that was like when you first were told about her diagnosis?  

[00:06:39] Shirley: Well, she was nine weeks of age. I brought her into the doctor at six weeks because she had a terrible cold, which was weird for a newborn. And they said that it was almost pneumonia, not put her on antibiotics, chest x-ray, she was fine, but she wasn’t, she kept crying. 

[00:07:00] When I brought her in at nine weeks of age, she had a ruddy complexion, kind of like reddish ruddy cheeks. I remember so clearly, and I had a two-year-old daughter at that point, so I was juggling as so many parents are, but that daughter was not with me when we went into the doctor’s office. And the doctor suggested that he do some blood work just based on how she looked and the answers I gave him were the questions she had, which I really didn’t know what he was looking for. 

[00:07:30] Then he asked me to wait in his office while he gets the blood results back, which was a little alarming. So, I did. I was in the back office, not in the waiting room, with her, just biding my time, feeling like, “what is going on?” And within a half an hour, he came back with the news that there’s something wrong with her liver. All her liver function tests are elevated. The only thing to do at this point is to go straight to Boston Children’s Hospital, which is what I was told. 

[00:08:01] From the doctor’s office, I had to arrange for something to take care of my other daughter, let my “then” husband know he has to leave work. We’re going, and there’s no delay. And it was frightening to say the least not knowing what to expect. And when we got there, there were residents waiting for us, which was also alarming. We went into this setting with hyper awareness and fear. That began the journey.  

[00:08:30] We ended up staying there for several weeks as they diagnosed her with two liver diseases: biliary atresia and congenital hepatic fibrosis. One of them, as you heard was congenital, which means it is in our genes. And… yeah, that was a little shocking. And the other one, biliary atresia, is based on a virus in utero that they don’t know where it comes from.  

[00:08:55] She had to have surgery at nine weeks of age because she had no drainage of her liver. Bile was basically spilling into her whole system and she would’ve died if we didn’t have surgery. And so, they did a specific surgery invented for this by a Dr. Kasai and was called the Kasai procedure. They basically removed her bile tree and her gall bladder, which was dead tissue, and they connected her liver to her intestine so that there was drainage and it allowed children with this disease to live beyond 10 weeks. Because it was gonna be a fairly fast death if she didn’t have this done.  

[00:09:26] We basically had to abandon our two-year-old daughter, left her with her grandparents. And that’s a whole other story because all of a sudden, she’s disrupted. So that began the journey that started off my daughter’s life. There was many ups and downs through all her phases of growth, and we all grew and changed from there. 

[00:09:48] Dannelle: Thank you for sharing the details because that kind of terrifying, terrifying diagnosis and to be in a situation where the healthcare providers – you can tell by their response how serious and acute it is – and having to navigate through that kind of fear and uncertainty. And on top of that, having unearned guilt about your other daughter and feeling like you had to abandon her in order to prioritize your other daughter’s life. 

[00:10:30] Shirley: We had no choice. 

[00:10:32] Dannelle: Yeah. There was no choice. What are some of the tools for coping with that kind of fear came from that experience?  

[00:10:43] Shirley: I think it’s important to say that I had no tools in the beginning. Actually, the tool I had was overeating, to tell you the truth. I still remember, I’m divorced now, but I still remember while we were waiting for the hours of surgery that my then husband and I went to the cafeteria and had lunch and had dessert, just kind of tried to pretend everything is normal. 

[00:11:09] That was my first indication that this wouldn’t work. Finally, when we got back up there and eventually the surgeon came out and gave us his not great diagnosis, I threw up. I got so sick. I mean, I had a problem with food for years and years because it helped numb down the emotional pain of what we were dealing with, through every stage of her life. Then I went into therapy once I got home and started working out problems. 

[00:11:40] Probably one of the biggest things I learned way back in the beginning is: I don’t have to answer people’s questions the way they’re asked me. Because, you know, I’m such an honest person that people ask me how I am, and I really believe that they wanna know when they may not wanna know or they wanna know how my daughter’s doing and I spill out the sob story. And they, I mean, I had somebody stop me mid-sentence and said they couldn’t deal with it and ran away. And that was many therapy appointments dealing with that hurt.  

[00:12:13] And so, I learned to say what I needed to say in order to satisfy people’s curiosity. Because, you know, I was pregnant for nine months and then they see me in public without a pregnancy belly. “So how is that new baby of yours?” I had to develop a script. Well, that’s what I did is I developed a script for specific questions and if I needed to write them down, I wrote them down and read them because I couldn’t deal. I became agoraphobic. I couldn’t go out for fear people were going to say things. I had to go to the grocery store. I had to pick my other daughter up from her childcare. It became like a landmine outside of my home. And so, I developed phrases that helped me. 

[00:12:57] As I went through therapy, probably one of the most important things I learned was square breathing. My therapist taught me that and it helped regulate my panic because I had panic all the time. “Is this gonna be the last day she’s gonna be alive?” “Am I gonna see anybody?” “What if something doesn’t go on and this medicine doesn’t work?” I’m a “what if” queen. 

[00:13:20] And I should say at this point, I didn’t have a supportive network. I had my then husband, but he took it upon himself to work because that’s what he knew how to do. And so, I was left with both girls while he worked and I was falling apart. And so square breathing helped me tremendously to remember “breathe in to the count of four, hold to the count of four, breathe out to the count of four, hold to the count of four.” I’d use it in my car. I’d use it before going to bed. I’d use it waking up. I’d use it changing her diaper. It just went on and on and on. It became my friend. Yeah, it was pretty intense. So that was one of the major tools that helped me.  

[00:14:00] And another one that a therapist taught me was passing a coin from one hand to the other. It doesn’t have to be any special coin. It could be a paperclip, something that’s small. Because I’m a fiddler. And if I have a coin in one hand and I pass it from my right hand to my left hand, right hand to my left hand, just quietly, I don’t have to share with anybody what’s going on. It calms my brain. It causes a calming effect, much like knitting or rocking.  

[00:14:27] And so that helped me too. And I used that for years and years and years. And I still talk about it because it’s helpful. It gives me instant relief when there’s panic. Cause when I’m panicked, my breathing changes and I gasp and I’m not breathing very deeply. Or I’m holding my breath and that is a sure-fire way for a panic attack to come on.  

[00:14:50] Dannelle: Holding our breath. It’s something that I hear over and over again, and something that I have experienced myself. And I remember thinking about it. I attended a session that you gave, and you were talking about passing the coin from one hand to the other. And I hold my breath all the time when I’m stressed and don’t even realize it. Like, I don’t even know how long I’ve been holding my breath. 

[00:15:18] Shirley: Yeah. It’s so automatic that it’s beyond our awareness.  

[00:15:23] Dannelle: Yeah. So, when you’re trying to navigate these landmines and you’re holding your breath, it just compounds the panic, compounds the fear.  

[00:15:35] Shirley: Absolutely. And if I’m with my well daughter, dealing with my sick daughter, my well daughter is taking all the cues from me. There must be something to panic about. And then she goes. 

[00:15:47] Dannelle: It’s contagious, whether we intend it to be or not. I wanted to ask you about, you developed these scripts for what to say when people ask questions that you know they may not really be prepared for an honest answer. What did those scripts sound like? 

[00:16:06] Shirley: Well, way back when, I learned to say, when people said, “I heard there’s something going on with your new baby, what’s going on?” And I would say, “yeah, we’re having some issues and I really don’t feel like talking about it now, but thank you for asking.” End of story. So, they say, “oh, okay. I understand. Well, I’m thinking of you.” “Thank you.” And my heart is guarded instead of spilling it out everywhere. That’s one script that I’ve used. When people ask me, “how are you doing? I mean, really? How are you doing?” And I said, “it’s tough, it’s tough. And it’s not something I wanna go into now.” 

[00:16:44] It’s creating boundaries around what I needed, cuz boundaries are so important. And I didn’t grow up in a very good household where there was good boundaries. So really, I call my daughter my teacher, because as I got into therapy I started realizing I don’t really even know where I stop and where she begins. I don’t know where my personal boundaries. I’m always taking care of everybody around me to keep everybody happy so that I can feel safe. 

[00:17:15] I started realizing the things I needed to help me feel better. I learned to define what I needed so that when I am caught off guard – and I would often write these down, even if I’m not reading them when I’m out in public, but writing them down helps me keep them in my mind – is I can say something like, “you know, thank you for asking. I really appreciate you asking, but I’m not in a place to talk about it now. If you wanna call me later” if it’s somebody I care about, “if you wanna call me later and we can have a private conversation, I’ll be happy to let you know how things are going.” And it helped me be safe.  

[00:17:50] Dannelle: That is so important to be able to protect our heart. 

[00:17:54] Shirley: Because truly we are our own best advocates. And I couldn’t have said that 40 years ago, but I have learned that I need to define what I need and be my own advocate, as well as be both my daughters’ advocates, but me too. I can be my own advocate. 

[00:18:13] Dannelle: And in doing so recognize that not everyone is in a place to be able to receive how it really is.  

[00:18:23] Shirley: Right. No kidding.  

[00:18:25] Dannelle: And that’s okay. But what that means for us is that we can’t spill our heart to that person, right? There’s enough pain already. And it just adds to the pain to attempt to share with someone who’s not able to receive it or recognize how heavy and hard and hurtful it is. 

[00:18:49] Shirley: Right. And I remember, I had other moms come up to me that were in my daughter’s school, who would say, “I had to bring my daughter to the hospital because she ended up having strep throat. Now I know how you feel.” And [Laughs] and that was another good one. I learned to just smile and not say anything, because I wanted to say it wasn’t fit for saying because there is just so lack of understanding. And also people don’t wanna hear the sad stories about children, let alone adult children. So, they brush it off. They ignore me, they avoid. You know, I went through all that and it’s painful. It’s so very painful.  

[00:19:30] Dannelle: It is… In going through and walking through this painful experience, these landmines, you continued to develop tools. Can you share more about the tools that you created based on your experiences?  

[00:19:47] Shirley: Well, I started journaling. A therapist actually suggested I journal. It’s a journal only for me, and I can say anything I want in it. And it gave me a vent because I saw my therapist twice a week during the most critical times, which is a lot of therapy, but there was still times I needed to say things. And I used my journal. 

[00:20:11] And the journal really became a focus for me that I collected a ton of journals. I have a huge bin of journals at this point. and it allowed me to witness what I was going through, which helped me put my book together tools for the exceptional parent of a chronically ill child, because I lived through what horrible stuff was happening, what I realized, and when I changed it with a tool or something, how it helped. 

[00:20:37] I learned the emotional freedom technique of tapping. I learned how to do that, which there’s videos online for free of ways to tap places on our face, on our hands, that cause a calming of a fast-beating heart, unable to breathe. It’s used a lot with veterans coming out of PTSD situations and they deal with panic. At first, I was a little shy doing it in public, but then once when I was in Boston, after I had started working again, I saw somebody on the platform waiting for the train and they were tapping their hand and I thought, “well, they can do it, I can do it.”  

[00:21:14] Another one that I learned through therapy was something called binaural beat music. It’s music that one listens to, and it’s available on YouTube. You have to experience with headphones. and what it does is it puts a tone in the right side and the left side that causes – there’s all types of binaural beat music now – but it causes a beat. If it’s specifically for calming down, it creates calming down. And so I would plug myself into a relaxing binaural beat music, lay on the floor, and sometimes I’d be crying. And by the end of 15 minutes, I wouldn’t be, because the brain gets stuck in this panic stuff. Music in general has helped me. 

[00:22:00] I also started several support groups for parents and caregivers of chronically ill kids. And we had a speaker once talk about self-massage. You know the ringing of the hands when you’re really upset and worried? There’s actually a pressure point in the middle of the palm that when you press it, it’s a calming technique and the same thing on the forehead. There’s energy points in the forehead that when you stroke a forehead, like a parent does to a child to calm them down, it’s actually calming. And the other thing that I use is, do you remember Dumbo the elephant?  

[00:22:35] Dannelle: Of course, I do! 

[00:22:36] Shirley: Yeah! Well, Dumbo couldn’t fly unless he had a feather. It’s kind of like carrying a talisman or worry stones in my pocket that represented courage for me, or it represents my feeling of home and I’ll be home soon, and I touch my stone and it helps me feel a little more connected to myself so that I don’t lose myself in the moment. It creates a bit of an anchor. That’s something that I still use to this day. In fact, the necklace that I have on right now represents that for me.  

[00:23:08] Dannelle: Is that a crystal?  

[00:23:10] Shirley: It’s a crystal necklace and it has colors of the chakras. You know, cuz we have chakras in our body. I’m very much all about meditation and mindfulness and energy work to help me stay calm. But I still practice all that. I actually learned to reparent myself through my therapy I realized that I can give myself things that my parents didn’t give me. And at first that didn’t make sense. Why should I do that? They’re my parents. They’re the ones that let me down. 

[00:23:56] I was really angry, but then I started learning after reading, and crying, and thinking, and talking, that if I’m proud of myself, I can say, “what a good job you’ve done.” Or I can write myself a letter and tell me how much I love myself and fill in what I need. It really is a form of reparenting. It continues to this day because there’s layers and layers of it. I’m an advocate for that.  

[00:24:04] Dannelle: I think I’m gonna write a letter to myself, telling myself how much I love me. [Laughs] 

[00:24:11] Shirley: I think that’s a fabulous idea. 

[00:24:14] Dannelle: That is a fantastic idea.  

[00:24:17] Shirley: Yes, and people hear it and they say, you know, “what a crock”. 

[00:24:22] Dannelle: No! 

[00:24:23] Shirley: But it’s not because telling ourselves something that we wanna hear is satisfying us on a level that goes beyond what the ego was thinking or goes beyond our fear. 

[00:24:33] Dannelle: And also tells us that we’re deserving of love, or if we’re not receiving it from an external source, it’s something that we can give to ourselves internally. 

[00:24:44] Shirley: And tell ourselves that we’re doing a really good job and caretaking a loved one, even though that loved one may not appreciate it, or there’s anger, but just telling ourselves what we wanna hear and then after we’re done, take a step away from it. And when you come back to it, read it out loud.  

[00:25:01] It’s a lot. I’ve learned a lot. That’s why I call my daughter my teacher. And I didn’t know I was in a classroom. I had no idea, but what I have learned about myself continues to grow. What I’ve learned about caregiving is huge. And about her soul. She came into this world for a reason, and she went out of it 32 years after she came and she put up a stinkin’ fight. And at times we butted heads and all that stuff, but she has left a mark in me that I learned so much about life as, her sister has.  

[00:25:39] Dannelle: I’m so thankful that you’re sharing those lessons with us. And that you continue to share those lessons with us in the way that you do. My last question for you, Shirley, is: outside of caregiving, what is something that you are also passionate about?  

[00:25:59] Shirley: I am very passionate about knowing that there’s more to this world than what we see with our human eyes. That I absolutely know, without a doubt, that my daughter is fine and that I picture her like living in Holland. And I can’t see her because that’s where she lives, but I can talk to her. I can hear her opinions on things and whether it’s in my mind or not is my business.  

[00:26:27] I tell her how much I love her, and I will see her again. So, I absolutely have a tremendous passion for believing that there’s a bridge between our lives we live as a human and what’s on the other side after people pass through. I believe that with all my heart.  

[00:26:46] Dannelle: Shirley, thank you so much for joining me today.  

[00:26:51] Shirley: You’re very welcome. Thank you for doing this work.  

[00:26:54] Dannelle: I love you.  

[00:26:55] Shirley: I love you too! 

[00:26:57] Dannelle: [Laughs] 

[00:26:58] Shirley: Caregivers count! 

[00:27:00] [Music] 

[00:27:03] Dannelle (Recorded): Thank you for joining our conversation with Shirley. Consider how the following actions could help address your needs as a care partner or care partners you may support.  

[00:27:08] For more information on Shirley, check out our show notes.  

[00:27:13] Every episode of The Caregiving Soul has a page on, where you can find the extended show notes, including tips and takeaways, transcripts and relevant resource links.  

[00:27:28] If you’d like to share your own tips related to this topic, or connect with us, visit the Empowered Us contact page, or reach out to us on our social channels. 

[00:27:40] The Caregiving Soul is an Empowered Us Original presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to this show wherever you get your podcasts. 

[00:27:58] And remember, the right care includes care for you.  

[00:28:09] [Music Ends] 

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