The rollercoaster of emotions that comes along with having a medically complex child is an inherent part of the “job”. Orley Bills, the Harley-loving social worker in the Rainbow Kids Pediatric Palliative Care team, spends his days supporting said parents while their children are hospitalized at Primary Children’s Hospital.
Sometimes he does this by utilizing his training as a certified grief counselor and LCSW and helping them sort through the hugely painful emotions that arise. Other times he gives parents a break from the heaviness and just chats about superhero movies. Regardless of the mode, Orley takes his job of supporting parents very seriously.
In this episode, Orley shares a few of the gems he’s picked up in the past 13 years in that role. He shares the necessity of creating a care plan to guide us in decision making for our children. We also chat about leaning into the painful emotions instead of stifling them, to cope with them in a healthy way.
This is a rebroadcast of episode 33 that was released in Season 2.
Madeline Cheney 0:00
Hello friends, Madeline Cheney here. As many of you know, we are currently between seasons five and six. During this time, we are hard at work producing brand new episodes for Season Six to be kicked off on July 28. In the meantime, a well-loved episode from the archives will be released each of the nine weeks. It is my hope that, whether listening to each of these episodes for the first time or the third time, that you will continue to feel held by this community. Today I have for you the popular; Episode 33: It's Okay to be Angry with Orley Bills, from way back in Season Two. This episode resonated so deeply with so many of you and I'm very excited to share it with some of my newer listeners who haven't listened to it yet. This impactful episode is generously sponsored by the friends and family of Carolina Quijada. In her message to me, she said, "This donation comes as a collective effort from our close family and friends in honor of our daughter Cruz's first birthday. We will continue sharing your podcast in hopes that parents joining our rare disease family finds the comfort we have found listening to the stories of other rare parents. Thank you for all you do." Generous donations were given from the, and please forgive my pronunciation of these, the Jimenez family, the Mendosa family, the Sotelo family, Patty Guzman, and several anonymous donors. I cannot express how meaningful this was to receive. Thank you, thank you, thank you! If you would like to personally sponsor an episode or partially sponsor an episode, meaning teaming up with other families, follow the link in the show notes and send me a message. I'm so grateful for everyone's support, monetary and otherwise. Okay, let's dive into this soulful episode.
Orley Bills 2:13
Anger is one of those things that people try to push down or push away or hide because it's so frightening but if you can find a way to effectively deal with anger, it's so good.
Madeline Cheney 2:28
Hi, you're listening to Episode 33 of the Rare Life. I'm your host, Madeline Cheney, and I have for you our final full episode of Season Two, with Orley Bills. Orley is part of the Rainbow Kids Pediatric Palliative Care team at Primary Children's Hospital here in Utah and he's been with them for most of the 13 years that they've been operating. The Rainbow Kids team is made up of doctors, nurses, a chaplain and Orley, the social worker. He's also a certified grief counselor. When I asked Orley what he does on a day-to-day basis, he said that he spends a lot of time in ICUs with parents, checking in with them, finding out how they are working through their feelings, and when requested, just chatting about superhero movies to give parents a break from talking about all the medical decisions and questions. He's a bit of a celebrity among the many families whose children have stayed at Primary Children's and he'll even answer a couple questions in the interview from a few families that he's worked with. So, I've heard Orley's name tossed around many times because of his celebrity status but I don't think he was there at our meeting with Rainbow Kids. When I was pregnant with Kimball, we had a large meeting with the Rainbow Kids team at the hospital and we talked about quality of life and plans of what to do if Kimball didn't make it. It was one of the hardest conversations of my life. I vaguely remember them saying someone couldn't make it, so I'm assuming that was Orley because I had never met him until this point and I was pretty bummed because of the reputation he has in helping families. I'm so excited to bring a little bit of Orley to you. In this episode, we chat about the importance of creating a care plan and letting that guide decision-making on behalf of our children. We have talked about the importance of allowing ourselves and our children to be angry sometimes and the importance of finding our inner mama bear. Orley is a lover of his 2019 Harley Davidson Street Glide Special and riding it. Let's jump into our conversation. Hi Orley, welcome to the show.
Orley Bills 4:58
Hi, thanks for having me.
Madeline Cheney 5:00
Yeah. So, to start off, what are some strategies that you give parents in coping, either with a hospitalization or even a new diagnosis that their child has?
Orley Bills 5:15
Grief underpins everything. Grief isn't necessarily about death. To me, grief is about loss and change, change in particular. When you get a new diagnosis, that's a big change in your life and there's a lot of loss that comes with that. Most people have an idea, a basic, general idea of what the future should have been for them and their child, and it's suddenly different now. In terms of how to cope with these new diagnoses, I think people are going to do what they're going to do. How people deal with change depends. So, my team makes fun of me, I shouldn't say makes fun of me, they love me but they tease me because my answer to a lot of these questions that are sociological in nature is; it depends. It depends, and how somebody copes with a new diagnosis, the way you would do it is not the way I would do it, it's not the way somebody else would do it. We all have different ways of going about it, and so I just go in and try to help people explore what has helped them in the past. "What is your plan now? What's next for you?" One of the big things I think helps people in coping with a new diagnosis is this term we have in Rainbow Kids called Goals of Care. That's one of the things the team is set up to do, is to help you uncover Goals of Care. I feel like if a family can thoughtfully sit down and think through, "What is important to us? So, we've got this new diagnosis. We're just getting information. It's scary. It's overwhelming. We don't know what any of it means." And a big thing on people's mind is, "Is my child going to die?" A lot of medical professionals don't like to go there because they worry and their job is to provide a lot of hope. I say, people are thinking that anyway, we should talk about a little bit if they want. Anyway, that's a separate idea, of how do you talk about that stuff, but coping with a new diagnosis, I think, involves those Goals of Care because if you can sit down and say, "These are the things that are important to us." And these are just random examples, it's different for everybody but if somebody can say, "It's important to me that my child be able to walk or talk or communicate with me, and that communication may be as long as they can open their eyes and see me and I can see them and we can recognize each other, then that's okay. I'm okay. We can get through this." But you have to have that thoughtful conversation about your Goals of Care and say, "What's important to us? What do we want and what don't we want?" So, you can do a lot of things in the hospital but is that the right thing to do? Doctors are scientists, they love to run tests. And sometimes those tests involve needles and blood draws and pokes. Having that Goals of Care in your mind, if you can say, "Well, what will this test show us?" And the doctors say, "Well, it'll just give us this additional information, it won't change our plan that we're doing but it just provides us a little more info. And yeah, it's a poke. And yeah, it's..." and you can say, "No, that doesn't fit with our goals. We're aware, the plan is the same, we're not going to do that." However, if you don't have that framework of a Goal of Care of what's important to you and how these interventions and medical decisions fit into those Goals of Care, if you don't have that, then that's going to increase your stress and anxiety even more because you're going to be directionless. It's just going to be everywhere and you're going to be overwhelmed and you're not going to know what to do but if you can think that through and say these things are important, "It's important that my child spent as much time at home with me as possible." What does that look like? "It's important my child be able to travel because grandparents are in Arizona. It's important to me that we're able to do some of these things. Will these interventions and medications help support that? Or not at all?
Madeline Cheney 10:15
Yeah, I really like that. Kimball's two-and-a-half now and I think we need to make a plan of care because there are decisions, like you say, medically, and we're just parents. A lot of us don't have medical backgrounds. And so, making these decisions are hard. A lot of times, doctors, like you say, they're scientists, they're there to try to fix things. And I think that is really helpful in the medical world as well as in the therapy world because there are these huge decisions we have, even for my son who is hard of hearing, where we need to decide, are we going to go the LSL, Listening and Spoken Language, route and teach him to speak orally or are we going to teach him to sign, ASL? There are just all these questions we have, that we have to grapple with and I think that having that plan of care can be super helpful in guiding and making all kinds of decisions for our children, that a lot of parents can't relate with.
Orley Bills 11:16
Absolutely. And to sit down with a group like Rainbow Kids just blows me away. I'm patting ourselves on the back but you have a doctor, a nurse practitioner, a social worker, a chaplain, an RN to sit with you and spend the time to say, "Who are you? What do you value? What's important to you?" Even having discussions about death and dying, like, "What do you believe happens? Do you have a system that supports you? Do you have a belief that helps you? How does that help you? What does that look like?" And then, slowly through those conversations, uncovering things to where people can say, "Yeah, okay. Yeah, some of these things I thought were important aren't so important anymore." My docs can answer your questions about pain and symptom management. We can do all kinds of stuff but if you have that goal in mind of where you're trying to get to, that can guide a lot of things, because then you can say, "Does this fit our goal? No? Then, no, we're not going to do that." "Does this fit your goal?" "Yeah, that does. Yeah, that fits most of them. I think we're going to do that."
Madeline Cheney 12:31
Yeah, it's a huge quality of life issue, where you have to make these decisions for your children a lot of times because they can't tell you. So, I would love to jump into a few questions that were submitted by parents. One parent wanted to know more about palliative care and the concept of not always extending a person's life at all costs because it is something that's very foreign outside of our community of medically complex parenting. What would you like to say about that?
Orley Bills 13:10
Again, it depends. I had a very beautiful experience with a dad that I've carried with me for years and years in this work. I will tell you that story really quick because it ties into my answer for this. His daughter had been in the ICU for a long time and things had been progressively getting worse and worse. I think the writing was on the wall and they were like, "Okay, how do we do this? How do we make this choice?" And I was prepared to walk down a certain path with dad, and he said to me, and I may get choked up because it always chokes me up. He said, "As her father, I accepted responsibility for her when I brought her into this life as her father. If she's going to die, then it is my responsibility to see her out of this life. And she's going to go my way, with me." And I thought that was beautiful. That responsibility a parent has to, even if their child is going to die, what is your responsibility? To be with them. To have them go your way with you. I thought it was just a beautiful, beautiful thing. And so, that idea of; how can you make some of these decisions for your child that just seem so counterintuitive to being a parent, it comes back to that Goals of Care. It's like a pendulum, swinging way to one side, I've seen families say, "If my child's heart is still beating, then they are fighting. Regardless of what's happening to any of the other organ systems or the brain, if the heart is beating, that means they're fighting, you fight with them, you keep going." Clear to the other side of that arc where people have said, "We know our child's life will be short, this diagnosis isn't going to be a long one for us. If our child's life is going to be short, we don't want to be in the hospital. We don't want tests, we don't want pokes, we don't want meds that will create all these other side effects. We just want to be home. We want to go sit by a lake, we just want to have time as a family. How do we do that?" To anywhere in between. So, a family that comes to that choice of like, "Our goal is time together at home," and then the age of COVID, if your child is in the hospital and dying, they only allow one parent at the bedside. And I will add, just for families out there to know the impact that has on staff as well, it is hard on families but the nurses and the doctors and the housekeepers and the people all around them bear witness to that burden a parent has. It's crushing to us as well. So many people are fighting against it, we have to do better than this. That's my own little soapbox but it just goes back to your goals and what's important to you and your child. Again, some view themselves as fighters and it doesn't matter, and they'll go out with a roomful of healthcare professionals doing a resuscitation on their child, and if their child dies that way then they died fighting, and I know that. And on the other side, "I mean, I just want them comfortable, I want them home, and I want my family around me." So for that, it just has to be a discussion between the people that are important to you in your life, whether that's spouses, grandparents, sometimes it's nice to have conversations together with the help of a team like Rainbow Kids, which we've done, by the way, we've had whole meetings with grandparents and aunts and uncles and moms and dads because parents sometimes get stuck in this position of like, "Well, my mom feels like we're 'giving up' and so she's pressuring, she says, 'You need to do all these things.' And if I don't, then I'm in trouble with my mother. My aunt on the other side has said, 'No, this is torture, you need to let them go, what are you doing?'" Family has their own ideas of what you should do and they put pressure on parents, and so parents are like, "I don't know what to do," or parents feel like, "We know what the right thing to do is but..." Let's say a parent chooses comfort path, they say, "Oh, I just want my child home and comfortable but my family's mad because they think we need to be fighting." So sitting down sometimes with Rainbow Kids and having a discussion and talking, and once all family members can kind of hear the medical information, typically we see they go, "Oh. I didn't know any of this." Or they might have the lone person who's like, "Doesn't matter. We'll get through it together. Keep doing it." So ultimately, we try to do the best we can but it comes down to those decision makers in the child's life because "I'm the dad, I accepted responsibility for her life when I brought her in and I accept responsibility for if she is going to die." That same thing applies here too, like, "What is your responsibility? And if it is that time, what does that look like for you?" And I think parents have to make decisions thinking ahead so that they can look back. What I mean by that is, looking ahead five years from now, you reflect back on what happened and go, "Yeah, that was okay. We did the best we could."
Madeline Cheney 19:52
They can feel good about it. Well, I remember so clearly when I met with Rainbow Kids when I was pregnant with Kimball, and his diagnosis is one where a third of the babies will die in the first month. There was that looming possibility and I remember you guys brought up this concept of like, "You need to decide at what point you want to give him comfort care and at what point you want to keep fighting." And at first, I was like, "Wait, what? I would always fight for my child, I want him to live." Then you guys taught me that living is not always the best option depending on the quality of life, and you can fiercely love a child and let them go and give them comfort care, as well as fiercely love a child and keep fighting until the day they die. I really love that concept because it's so complex. There's no black and white and I think the bottom line is that we love our children and we're really trying to make the best decision we can, and we can't judge anyone based on their decisions because that love is always there and we're just trying our best. It's such a complex issue. I was like, "I hate that this is a conversation I have to have because no parent wants to be in that situation."
Orley Bills 21:20
Yeah, I agree.
Madeline Cheney 21:24
So, I would love to move on to another question submitted from a parent. She said she would love to know how to help siblings cope with the trauma, anxiety, and PTSD after a baby with special needs is born into the family, especially when the child is still living and the trauma keeps repeating itself in a sense that you settle into a new normal as a family and medical needs naturally arise.
Orley Bills 21:55
Yeah, that's one that we get a lot. So Madeline, I'm gonna ask you, what would be the answer here? What do you think I would say?
Madeline Cheney 22:06
A similar answer, it depends.
Orley Bills 22:11
It depends. I genuinely believe that because I have met six-year-olds, seven-year-olds, that are wise beyond their years, and I've met 16-year-olds that are emotionally still kids and struggle. And so, every family who has siblings, everybody knows that each kid is different from the other, they all have such different personalities, such different ways of coping and doing things, and there is a real and genuine thing that happens to siblings who have a brother or sister with special needs. When that child goes to the hospital, typically a 30-day stay average, a lot of our families are there for at least two weeks. Then mom works or dad works, and they take shifts or sometimes it's just mom. There's a lot of complexity to it. It's a mess. And kids sometimes have to go to their support systems. So, they go to aunts', uncles', neighbor's, or their grandparents', or wherever, in the meantime, and sometimes siblings can grow to resent their brother or sister and just be like, "Oh, here we go again. Mom is there, dad is there, I'm not going to see them again. This is what it is." Some kids are resilient, adapt, do well, understand what's going on and how they can help and what they can do. Overall, I think all kids generally become better individuals with a deeper sense of gratitude and resilience for having a sibling with special needs. I'm amazed at all the brothers and sisters I've met of the kids I work with who are just fantastic. Kids are people on their own. So, how do you cope with that? I say, you have to keep the lines of communication open. And it's hard, just like that last question, sometimes, as you make choices to limit medical interventions, it's hard. There's grief associated with any choice you make. There's grief associated with these kids and it's just a matter of, I saw something recently that said, "Choose your hard." Being fat is hard. Being skinny is hard. The sacrifices you have to make either way, or the things you do, it's hard. And that's the same thing with some of these choices, "How do I support my kids?" It's hard and sometimes you don't always make the best choices. Sometimes you just survive. You do what you got to do to just make it to that next moment, and it's okay, kids are so resilient. So, my number one answer to that would be: communication. You have to learn to be able to talk to them, to get them to talk to you. Make the people in their life aware, if that's teachers, to say, "They've got a brother/sister with special needs, they're in the hospital, so you may see some behavioral things that come up." It's about that communication and keeping an open door for those kids to be able to talk, to vent, to speak to their pain too. And how do you recognize that and what do you do with that? Then there's lots of different coping ideas and things too. Anger is an emotion that scares the crap out of everybody. Kids, when they're angry, there's this attempt to nullify and soothe them, "It's okay, it's going to be okay." If you can find a way to allow a child to effectively be angry, it's so good and so powerful. I love smash rooms.
Madeline Cheney 26:27
No but I can imagine.
Orley Bills 26:30
They set up all kinds of stuff and you just destroy it. You don't have to clean it up, you don't have to do anything. And people do versions of that. If you don't have the money for that, people do versions of it. They go to the store and buy 25-cent ceramic plates and huck them at a brick wall where nobody's around. And then there's some catharsis in cleaning that up too, of sweeping it clean, putting it away, like, "Okay, we got it out. Now we keep going forward, we move on, we clean that up and we go." When I did therapy for Street Clinic, that's the homeless health care clinic I started, I used to tell the guys I worked with, "You can kick anything in the office that isn't me. Just don't hurt me. If you want to kick my desk, go for it." If you can provide some of those outlets, I think people would be amazed. Anger is one of those things that people try to push down, push away or hide because it's so frightening. Joy and love are what we want to see and be around but if you can find a way to effectively deal with anger, it will go so far in helping the other siblings.
Madeline Cheney 27:53
So, would talking it out also help with that venting, allowing them to feel angry and tell you about their anger. Do you think that would be effective too?
Orley Bills 28:04
Absolutely. I remember, there was a mom at the hospital, a very proper, faithful woman, and she did very well to try to keep her anger contained, and I remember telling her, "Let's take a walk," and so we walked outside and we went up to the parking garage, and she would scream out at the city, she would cuss and scream. I just remember, like, "I had this picture of this proper lady, and then we go out there and she would just let it go." But she felt better. She was like, "Okay, let's go back. I can go back now." So, absolutely, talking about it and telling kids you're mad, it's okay to yell and scream, and sometimes it's grab your pillow and scream as loud as you can into your pillow. You can absolutely do that anytime. And helping them put words to that anger. That's where art therapy stuff comes in, music therapy stuff comes in. There are so many different tools you can use to help kids cope with what's going on, and yourself too because that's going to be a big piece of it too. As parents, you try to keep everything together, how do you tend to yourself? How do you tend to your own anger at this stuff, too?
Madeline Cheney 29:29
Yeah. That's so valid. What would you love to leave parents with, what is your your pep talk for us parents who are going through so much?
Orley Bills 29:42
It's not going to be a very popular opinion but I think you need to lean into that hard place. And that's an art, it's a balance. You need to be able to tap into that darker side of yourself, that place where, we typically call it your mama bear, but in order to advocate for you and your child and your family, sometimes you've got to stand your ground firmly. It's scary and it's hard but I tell families, "You go to bed with you, you wake up with you." These doctors, these nurses, they're going to do the best they can for you. And then they go home to their family, they go home to their lives, their journey takes them on their path, your journey is yours. You need to think about the decisions that you make, not in terms of whatever the doctors think would be best but it's about you and your family and your child, and your heart. It's all difficult but which of the difficult choices are more tolerable for you? You've got to lean into that hard place sometimes to say, like, I remember a mom, we were talking in a room in the ICU once, the nurse said something and she stopped and said, "We're not here to be friends. You're here to take care of my child. Please help me take care of my child." And the nurse was a little taken aback and was like, "I mean, all right." And she finished up and left and the mom was like, "I know how that sounded but damn it, I'm tired." I said, "Yeah, that's okay." I don't know that you'll see her again, maybe, maybe not, but you're going to see your child every damn day of your life and so absolutely, sometimes if you've got to be a little short, if you got to be a little rough, be a little rough. Hell, we tell parents, "If we come in and you're like, "Not today, man. Not today.' Yeah, no problem."
Madeline Cheney 32:24
I think I've done that before. "I'm good. Okay, bye."
Orley Bills 32:34
The hardest work I think you'll ever do in this life is on you. This experience of having a child, this experience of having a child with medical needs and complexity is forging you, who you are as a person, and you'll get close to breaking. You'll feel like you've broken, you'll feel stronger than ever, you'll experience highs and lows, and joys and sadness that a lot of people will never get to. If you can learn to kind of shift with some of those sands and look at yourself and honor where you're at, you'll be okay. I think people get into trouble when they try to suppress all that stuff. When you try not to cry, when you try to hold your anger in, when you try to just say, "I need to be strong." That's what gets you into trouble. The resilient, healthy people find ways to lean into that and to let it out, like a pot that's boiling. You've got to let the steam out a little bit. You've got to take the lid off sometimes. And that's an art, to how you do that.
Madeline Cheney 33:49
Yeah, it's so painful to do but then you do feel so much better afterwards. It does not feel good to hold it in all the time. And it's impossible, it can't stay in.
Orley Bills 33:59
Yeah, it finds its way out, one way or another. You'll get stomach aches, headaches, all kinds of aches and pains and just be like, yep, insomnia, racing thoughts, you're just in that fight or flight response. You just live at an intensity and a level that can all be worked on if you talk about your Goals of Care, what you're okay with, what you're not okay with, where you want to be. Leaning into some of those hard places and learning to hold your own boundary too, you can still be firm and polite but it feels good to say no to people. Trust me, it feels good to say, "No, I'm not doing that. No, we're not going to do that." It gives you more control, to say no to things.
Madeline Cheney 34:53
Yeah. And a lot of parents that I've interviewed on here, I usually ask them, "How have you changed," or, "In what ways have you evolved." And a lot of times they say, "I used to not be able to speak my mind but now I've been able to do that, and now I feel like I can defend an advocate like I never had been before," because you have to or you'll just be mowed over.
Orley Bills 35:14
That system, the healthcare system, is huge. It is huge. As you know, how many times a day, if you're in the hospital, you've got to repeat the same piece of information to 20 different people, you're just like, "Are any of you paying attention to what I say to you?" It's ridiculous and so that's where you have to come in. I've had parents be like, "We've tried this medication, here's the date we tried, it didn't work. Get out of my room. I want to talk to somebody else. That's not a thing. We've been there, we've done that." And then the doctors leave. Then I'm there sitting with them and they're like, " I was mean, I'm so sorry." And I'm like, "No, you did great." You have to speak your mind and sometimes somebody's feelings might get hurt but that's the burden of professionalism. That's the burden healthcare workers have to bear to be like, people are mad and upset, and it's usually not at us. The thing you're mad about is usually not the thing you're mad about. And mad is easier than sad. If you can learn to lean into that and integrate that into your life, at little bits at a time, and you won't do it great, sometimes you'll be like, "Oh, I went way over on that one." Or sometimes you'll think back and go, "I could have been more assertive there but I didn't."
Madeline Cheney 35:14
Well, thank you so much Orley, I feel like we have some real gems in here for all of us parents trying to navigate this huge, heavy thing of having medically complex children and their diagnoses and just all of it. I really appreciate you coming on and sharing your wisdom with us.
Orley Bills 37:05
Thanks for having me. It's great. Like I said, we could do hours and hours on all the different things so, good luck,
Madeline Cheney 37:12
If, after listening to this episode, you feel like you need help working through the huge emotions associated with parenting children with medical needs, I encourage you to check out our sponsor, Better Help, an online service providing licensed counseling remotely. There's a link in the show notes. Please share this episode and this podcast with anyone and everyone you think could benefit from it. Reviews on iTunes are also very helpful in helping others discover it. Join me next time for Season Two's finale episode as we celebrate another amazing season. See you then. You can catch another rebroadcasted episode next week.