Ep. 3: Quality of Life w/ Alyssa




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Quality of life can be a complex issue, but also really, very simple: Is your child happy? Do they experience joy? Are they loved? Alyssa affirms that these questions are key in determining our children’s quality of life, and that their abilities have nothing to do with it.

We also talk about how medical decision-making on behalf of our children comes into play. She shares some great advice on weighing the side effects against a potential medication or surgery.

Alyssa is passionate about the concept of quality of life; her roles both as William’s mother and a RN in oncology have given her unique perspectives both medically and holistically.

In this conversation, Alyssa also boldly declares that our children’s disabilities and diagnoses are not negative; they’re positive.

people tell me I'm sorry quote
Episode Transcript

Alyssa  0:00  
"I've been questioned like, he doesn't have a quality of life. He doesn't do anything, he doesn't walk and, I just don't want him to be measured by his abilities. I don't want to be measured by my abilities. No one does."

Madeline Cheney  0:12  
Hello, you are listening to The Rare Life. I'm your host Madeline Cheney. And today we have a special topic episode with Alyssa Reidhead. Alyssa shared all about her journey with her son William in the previous episode. If you missed that, I highly recommend going back and taking a listen. Alyssa chose to talk about quality of life and what that means to her-- What good quality of life is and what it is not. She also talks about the deep connection that she has with her son and how she measures his quality of life by his love and happiness and not by his abilities. I learned so much from our conversation together about this. I think her point of view and perspective is very refreshing and very positive. And I'm just so excited for you to listen in on this. So without further ado, let's talk about quality of life. 

Okay, Alyssa, for people who aren't familiar with the term quality of life, how would you describe that or define it?

Alyssa  1:15  
I'll start with like, me being a nurse. Quality of life basically kind of describes if you're given a diagnosis of something. It's how is your life going to look with that diagnosis? Are you going to be able to go about your normal daily life? Having a job or getting married, having kids, going to school? versus Are you going to be stuck in your home? Are you going to you know, those kind of things? What is your life going to look like? How is it going to change with this diagnosis? Quality of life... It's hard because everybody's definition of quality of life is so different. Um, some people may look at William, who's in a wheelchair and doesn't talk and doesn't eat. And, you know, these are the things he can't do. And they look at him and they, they will think they can say, he does not have a good quality of life, meaning he can't experience life. It's not-- his life doesn't have quality, quality meaning full of good things or, like happiness or not. Like, fulfillment like you know. And Ben and I have always felt like William has a great quality of life. We've always felt that way. And I've just--going about my life and thinking about quality of life and what it means. I think it really just means like, you as a person who has a diagnosis yourself or parents of a child who has a diagnosis. How do you feel How do you feel? Really? Huh? Do you feel like they're happy? Do you think they enjoy their lives? Like William, you know, I think he's just he's a really happy kid and we take him out on a walk. And he feels the leaves of the trees and he feels the wind and he laughs when we get his wheelchair stuck in the rocks, and it's all like rackety, and you know, and he just he laughs and he has a great time and to us that's, that's good quality of life. Good quality of life to us, does not mean milestones or steps on a checklist of, Okay, now they can walk, now they can talk, or abilities, in that sense. 

Madeline Cheney  3:47  
Right, did you-- I'm curious. So we live in the same area. And we were going to the same hospital for Kimball as you were with William... Did you meet with the group Rainbow Kids, talking about quality of life for William before he was born?

Alyssa  4:07  
Yeah, so we were hooked up with rainbow kids while I was pregnant. 

Madeline Cheney  4:11  

Alyssa  4:12  
Yeah, they're great. We love them. 

Madeline Cheney  4:14  
Yeah. Was that like your first introduction? Because for me that's like when I think of quality of life, I remember that meeting with them and talking about, you know, different aspects of quality of life. Is that when you were first exposed to that idea?

Alyssa  4:28  
Yes. And it was the first time because I don't know if you had this, but they would like, they were talking about like, a trach and a G tube. And you know, like things that he would need to stay alive, or treatments or staying in the ICU, and they were talking about, like medical things, and I wasn't a nurse at the time. And I was like, I don't know what a tracheostomy is, or what a G tube is, I don't know all of these things. And it was kind of based off of that, but also based off of, like, things that would sustain their life, that was like the medical world. And then they talked to me about how you feel the feelings that you have. And I felt like they were two separate things. But that--yeah, that was long story short, that was the first time I was introduced the quality of life or decisions to that you need to make for your child for their quality of life, I guess.

Madeline Cheney  5:30  
Yeah. Let's talk about those decisions. What kind of decisions come up in regards to quality of life?

Alyssa  5:38  
Probably like, with William specifically, the biggest decision was a G tube because he could breathe on his own. And he could do everything pretty much on his own. But he couldn't eat. He wasn't eating. And a g-tube for us was an easy decision. We were like, that's fine. Like he can--You know, he enjoys life, we enjoy having him around. So there's the G tube for him... when he started having seizures, that was another thing that we kind of had to decide was what seizure medications, what kind of medications should he be on? What kind of interventions do we need? And our neurologist is amazing at working with us at types of medications and side effects, sometimes side effects for seizure medications are just as bad, or what the parents think is just as bad as the seizure or even worse. So sometimes, you know, and it's all dependent on what you think and what you and your child think and everything of whether we should treat this, you know, if they're, yeah, they're not having seizures. But how violent are the seizures? How often are they--depending on how many seizures they have, dependent on is the seizure medication, putting them asleep all the time? Is it making them angry all the time? That was another thing that was a big--and we still we're still going through it-- trying to balance out seizure medications with seizures and is it worth it? Is it not? What should we do about that? Surgeries are the same way. Should we do this surgery? Is the surgery going to benefit him? Is it not going to benefit him? Is it going to be hard on him? You know, those kind of things that's like for William specifically, we've even had to decide... He almost got a tracheotomy twice and he ended up not getting it. He ended up not needing it. But even then we were like, should we put a trach in, should we not put a trach in? Oh, man, like I like....we should all be doctors at this point. Because, like, I don't know, like people, people might listen to this and they're like, what is a tracheotomy? And you know what, I wish I didn't know!

Madeline Cheney  7:57  
Totally, totally. Yeah, those and those are like just really hard decisions. Yeah, they're heavy, they're heavy. 

Alyssa  8:07  
They're so hard!

Madeline Cheney  8:07  
And I don't even, I'm gonna take this part out, I don't even know enough about the topic of quality of life to know what to ask you next about it. To be honest, so like, what else would you like to share about it?

Alyssa  8:23  
Um, I think my biggest thing with it is I've had a lot of people like to debate me on his quality of life. And saying that he doesn't have a quality of life based on his abilities. And it's, it's been hard because sometimes I think like, Am I just keeping him alive like for me, you know what I mean? Like, is this necessary like, Am I you know, what am I doing? What is my-- and I see it all the time, like even in oncology the decisions that some patients make, versus decisions other patients make because it's it's all so personal. And making those decisions and discussing that with your doctors and everything is just, it's really heavy. It's really hard. But I've always just been open to things. And I've tried so hard to not measure William based on his abilities. Because I would hate for someone to measure me on my abilities. And I'll just, I'll just start with this story. So I'm from Texas. We were in Texas at my friend's dad's lake house and William was there and we were playing in the lake and, and he went on a boat ride. And the whole time I was like worried because we forgot his leg splints at home. And I was like, Oh my gosh, like his ankles have these issues. And we need the splints on and I'm all worried about how we forgot the splints and, I was thinking about that when we were getting on the boat. And he was sitting with my one of my best friends on the boat. And the boat gets like going really fast. And the wind, like, kind of hits him in his face. And he just starts like laughing and smiling and he's just loving this boat ride. And like he's loving like, the splash of water and he's just, we're all laughing and my heart just like felt so good. And I was just, I was like, This is what it's about, you know, and I was like this is it. This is it and I feel it feels good. He loves, he loves being here and he loves being a part of the world and and it's all about keeping that in mind. And while you're while you're at therapy and while you're at the IEP and while you're at the doctor's appointments trying to figure out what should we do? should we do this? Do not forget--the splint should be not like...priority should be giving your child love showing them love showing them the world. You know, when you take him for a walk, have him touch the grass. If they can't see anything, have them touch the grass, ya know, they can't hear? You know, look at the grass, like look at their abilities. Because we've had a lot of people tell us like, he can't do anything like what are you doing? Like he can't do anything. I've even had people tell me that I was a terrible mom. I should have had an abortion with him.

Madeline Cheney  11:52  
Oh my gosh.

Alyssa  11:54  
People say the darndest things. But you know because they look and they say like, look at like you, like what kind of life does he have? You know what kind of life do you have? He can't he can't see anything he can't walk. You can't do any of these things. And....but I always I always think about that boat ride. I always think about that boat ride. And I think about the wind brushing in his face, I think about his laugh and I think about him exploring the world. And I think about our cuddles on the couch. And I just think about the life and I'm like, What about life? What about life? And honestly, that like has gone to me like, what about my life? Am I happy with what I--am I happy on the boat ride or am I worried about work? Or am I worried? You know what I mean?

Madeline Cheney  12:45  
Yeah, totally.

Alyssa  12:46  
So, I guess long story short, I'm very passionate about quality of life. Because I was introduced to it in the world of mechanical steps in order to sustain life. And medication steps in order to sustain life and medical decisions and that's like what I thought of as quality of life. And as I've gone through life with William as I've talked with him, as you know, we've experienced life with him. I've just started to see I was like, it's more than that. It's like, experiencing love, knowing love, and just loving being in a family and loving each other and enjoying life and going on a walk and going on the boat ride and enjoying the wind in your face and enjoying the sound of the waves and don't worry about the splints for a second. And so quality of life has changed for me. So every time I, because I'm asked that every time I go to the doctor with him, they're like, How's his quality of life? I always say it's great. Great, because he's happy. And that's how we measure like, is he happy? Is he enjoy what he's doing? Does he does he seem like he's happy? I think happiness is the biggest thing. And yeah. And I just I'm very passionate about that, because I've been questioned like, he doesn't have a quality of life. He doesn't do anything he doesn't walk and, and I just don't want him to be measured by his abilities. I don't want to be measured by my abilities. No one does. I want him to be measured on his moods, his happiness.

Madeline Cheney  14:31  
And I think your intentions like how you were so deliberate, and making sure that he has joy in his life, despite all these different hurdles that he might have, you know, like these normal senses that most people can use to feel joy. You're a lot more thoughtful about it, I'm sure, to give them those experiences. And I think even that can be a great lesson for everyone to like you said to enjoy the boat ride and to be present. And to enjoy the little things in life.

Alyssa  15:04  
And it's easy like I'm sure you know, it's easy to get caught up and he needs to get this many hours of therapy in a day. You know, we need to practice eating. We need to practice. You know, I don't know what your son needs, but you know what I mean? Like you got caught up in it. 

Madeline Cheney  15:21  
Oh, yeah. 

Alyssa  15:22  
You know what I mean? Like, not that therapy's bad. But yeah, you just get caught up in it. And you just need to take a moment to just... Are we happy? Like, Are you happy? Do I see happiness? Do I see you enjoying life and experiencing life?

Madeline Cheney  15:39  
I think they can give us success too, because there's a lot of pressure to like, fix them, or to do things to like, help them you know, do these things that are harder for them to do than a typical child. And I like, there was a moment when he was little and he was littler, he was like a baby. And I was like, I just need to focus more on loving him because I was getting really caught up in all the milestones he wasn't hitting and I was getting super stressed out about it. But once I started focusing more on loving him and enjoying him life got so much better for me too. I'm sure it did for him. Because I don't think you do anyone a favor when you treat them like a problem to be fixed.

Alyssa  16:21  
Amen. And you know what, he probably started doing things that you know, that he started progressing in way more ways that you were like-- and it's so easy to get caught up in that, you know, what really bugged me was when I was when I first had William and really struggled with this was the whole Oh, so and so had their eight month checkup and they're in this percentile and this percentile for growth and this percentile for weight and they're rolling and crawling and rolling, doing all these things. And I was just like Williams eight months...There's not much...he's alive, you know, I would compare, I would compare and it was horrible. Like, how can you compare? Like, you probably think that, how can I compare my child to a typical child? You can't do that. You can't compare even to typical children together. And it was hard and it was hard on me. And I was like, Am I a bad mom? Am I you know, am I terrible? Like, what am I doing and, and it was just it got to a point where, just like, what you were saying, I needed to just enjoy. And I needed to just let William take the lead. And I needed him to just, we're going to do it his way. And we're going to go with it. And it was just a lot happier for everybody.

Madeline Cheney  17:57  
Life is so much better that way. Yeah, I think it also-- I had some experience like, when people I mean, like I did it too with my older daughter who's typical, like, I would just like, list out what she was doing. I love how you phrase that, like, I don't want him to be defined by his abilities and no one does. And I've become more intentional with my life like Facebook updates like with Wendy and with Kimball. To be like, this is what they love, or this is what makes them happy, like more of like, who they are more than what they're doing, which is way more interesting anyway than like, their little, like, list of milestones that they've been hitting. It really makes you think about stuff that you know, I don't know, I wasn't questioning before. I never really thought twice about it.

Alyssa  18:44  
Like, I want people to look at me and see who I am. You know, like, I want people to say, like, this is who I am as a person, like, okay, I can't hike. I can't run a mile. And I--you know, I can't because I'm not a physical (but you guys can tell that I'm not like a physical person like I don't do exercise) you know, I can't run a mile I can't hike a mountain I can't climb. You know all these things. I wouldn't want people to look at me based on my abilities and say, This is her worth. Because she can do ABCD, like my worth is because I am a human being. And that is my worth. And plainly like everybody has worth plainly because they are human. And, and it's the same thing with William. Same thing with Kimball. It's the same thing with all these little children is that they are human and they have value. And their worth is from that and they have worth because they are human. And, yeah, I just I just want William to enjoy life and to experience life. And, you know, and he has fun learning at school learning how to communicate and help him with physical therapy and we help him with and you know, there are things that we choose to do. But everything is based off of, how will this help him to enjoy life? Will this help him to be happy?  We've had to say no to surgeries, because we're like, we don't understand how this can benefit him to enjoy life. 

Madeline Cheney  18:52  
Yes. I think that's like one of our, I don't know, I've been really reflective about the parents role with the medical team of like making these decisions. And I think that's one of our advantages is that we love them and we see them, we want them to be happy, when of course, the medical professionals do too, but not in the same way we do. And I do think that that is a great way to look at every medical issue that you're dealing with, like what will make them happiest or most comfortable. And that is what you should go with. I think that it is like, so great. 

Yeah. And it takes time. And I like--there's only been one time in, like, our life or adventure with William (We call it an adventure, because it is an adventure) is like there was just one time where we didn't follow a doctor's guidance. And all the other times we've followed it, but we've taken time to think about it, to discuss it. As a nurse coming from like the medical perspective of when I've educated patients. The doctors are really there to give you their education-- medical education. And then they're like, this is what I would recommend. Ultimately, it is the patient's decision for their care or parents decision for their child. And so that...parents don't take that lightly. Patients don't take that lightly, like coming from a nurse. They don't take that lightly. They take their care and their medical needs very seriously. And I've taken it very serious. I've taken Williams medical needs very seriously. And I think sometimes you have to make decisions in the moment (we've had to make decisions in the moment too), but taking time to really think and to just talk about what would this mean for William, what would this mean for his quality of life for his happiness or his enjoyment. You know, and just thinking about those decisions, asking questions. This is me coming as a parent, ask all the questions me as a nurse, ask all the questions like seriously I tell my patients all the time, call me. Ask me whatever questions you want. If I don't know the answer, we'll figure it out. But ask, ask all the questions you want. And don't be afraid to do that. And if your medical team for some reason has issues with that, they're probably not a good medical team. Like, you know, ask the questions, think about those decisions. Talk it out with someone you trust, your spouse or your mom or your dad or whoever you trust. Um, and I think I just, I'm very passionate about it being about the enjoyment of the child. And I feel like the parents are the ones that are the best at judging that. Obviously the child would be the ultimate judge for that. But if they can't speak for themselves, the parents are the best judge at are they enjoying their life? Are they happy? Do they have joy?

That might look different for different children like maybe an NG tube would be better than a G tube or vice versa. And that is where it comes into play of like, specifically with this child with William or with Kimball or whatever-- with your child being like, what makes them happy, or what is bothering them. Like what should we focus on fixing? I mean, like one example too, like, Kimball's growth has been a constant challenge. He has a form of dwarfism and even like within his genetic like diagnosis, he's really small even on there and plateaued at different times. And I'm, we're being so stressed about trying to help him grow and to figure out what was wrong. But once we had gone to like, we've been seeing, you know, the GI clinic a lot and dieticians and we even went in to check his growth hormone. And once I was able to like to confirm that there was nothing wrong that I could fix, it helped me like relaxing. And that's one of those things like he doesn't care if he's small, like as long as there's not this underlying condition that will like affect him negatively. Like, he's fine. He's happy. And I don't know, I feel like I could have definitely picked up on that faster because it was really stressing me out. But I think whenever I go back to that of like, Kimball's happy Kimball is loved, he's safe. He's, he has a good life. He doesn't care if he's small. He doesn't know any different.

Alyssa  25:48  
I think us as moms just get protective. Like, honestly, like I I get really worried. And William, he doesn't-- He's not fazed, like he's been made fun of in the store. You know what I mean? Like, we've been at the store and kids have laughed at him and kids have said things. And he doesn't, it doesn't faze him. You know, it doesn't like make him sad or hurt his feelings or you know, he just kind of goes about his day like normal. He's just still whatever, he doesn't really recognize it. But me as a mom, like I-- that's the first thing I was so scared of. Was I was like, he's gonna be bullied. He's gonna be like, you know, I get protective of him. And protective of bullies, protective of health protective of, you know, anything. I'm worried. I need to make sure he's, you know, just like you. I need to make sure he's growing. I need to make sure he's safe. I need to make sure that he's you know, and we're mama bears like tiger moms. Like it's just plain and simple. And I'm very protective of William and you know what? I've had to just let it go. Like, some kid laughs at him in the store. I have to remind myself that I'm like, he doesn't. He doesn't recognize it doesn't hurt his feelings. You know, he's okay. So um, you know, he's fine. It's me. I'm the one who's upset, right? 

Madeline Cheney  27:23  
Yeah, yeah, totally. Oh my gosh. Well, and I think it just it all goes back. It's like, is William happy? Yes. And then that can bring a lot of comfort. I love that. Um, do you have any last thoughts about William and his quality of life?

Alyssa  27:48  
William has a wonderful quality of life. He's happy. He enjoys his life. It's funny because people will look at our family. And they'll be sad for us. They'll feel bad. I have people that tell me I'm so sorry. I'm sorry, your child was born this way. It's a negative thing has this negative aspect to it. But it's not. It's not negative. It's wonderful. It's great. Our world, we're so happy. We laugh all the time. It's just... there's this happiness and joy that fills our home. And William is just, he brings so much light and joy to everybody around him, and he is just so happy. And that's what it's about. If you're ever worried about what other people think, because I am and I was, I still am--people feeling pity for me or feeling bad for me and you're a special needs mom, that's so awful. It's so horrible. But it's like, it's the best thing. It's awesome. I love William. He's great. And I love the joy that he brings our family and he's so happy. He's like the happiest kid. He has personality. And you know what, maybe, maybe not a lot of people see that. But I do. And my husband does. And the people that are take time around him, see it. And if you take time with any special needs child, if you just take time to listen to them, and just be with them, see how great they are, and how they benefit the world. And that's what it's all about. And it's about recognizing that and knowing that, not feeling bad, not thinking of it as a negative thing. Autism is not a negative thing. Dwarfism isn't a negative thing. It's not a negative thing. It's a positive thing. And when you think of it as a pos-- this is positive. This is how Kimball can benefit the world. This is how William can benefit the world. This is how his autism can benefit the world. This is how this disability can benefit the world. And when you think about that, let's stop feeling bad for each other. Let's stop being sorry. And let's try and benefit and let's see the happiness and let's focus on what all our children are focusing on is being in the moment and being happy with what we have. And that's that's what it's all about.

Madeline Cheney  30:45  
I love that Alyssa. I think I think this interview is really the secret to happiness when you have a child with medical complexities. That is like amazing. I think that's the secret and that is the key to happiness. I'm gonna really like--that's gonna stay with me. I'm gonna really think about that. I love that. Thank you so much for your wisdom and for your passion on this topic. You're amazing. Thank you so much.

Alyssa  31:13  
Yeah, anytime.

Madeline Cheney  31:18  
If you would like to share your story and passion on the show, head over to therarelifepodcast.com and go to the contact page. We'd love to hear from you. If you want to connect and interact with other parents of our kiddos, join our Facebook support group called parents of children with rare conditions. It's great and the more the merrier. Don't miss next week's episode 4: You Are Not Your Child's Therapist with developmental specialist and dear friend, Lisa Rawley. See you then.

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Ep. 119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-2-23/319744619-22050-1-1e2071eee4df4.m4a


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68: Dipping My Toes into Educational Advocacy