Episode 004 – Teens Living with Chronically Ill Parents

Episode 004

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Transcript of Episode

Episode Four – Guest Interview Sarah Spayd

Hudson

Welcome to episode four of the Be Daring Life podcast. I’m here with today’s hosts Jenna and Rachel.

Rachel

Thank you, Hudson. Today we are joined in the studio by the lovely Sarah Spayd. Thank you so much for joining us today Sarah!

Sarah

Thank you

Rachel

Our goal with Be Daring Life has always been to help teens and sometimes that’s fun and lighthearted and sometimes it can involve slogging through some really difficult subjects. We asked Sarah to join us today because she is a warrior and has lived through some hard days. Her family has walked through the serious life changing illnesses of both her parents. About eight years ago – is that right? Eight years ago?

Sarah

He first started having symptoms in 2006 of ALS but was actually diagnosed in 2013.

Rachel

So, 2006…..about 13 years ago her dad was diagnosed with ALS, or Lou Gehrig’s disease. Her dad is one hard core dude. He is an Army Ranger. He’s actually in the Ranger Hall of Fame. So, it must have been hard to see such a tough guy be hit with something so serious. Do you remember the day you heard about his diagnosis?

Sarah

Yes, and I kind of didn’t know what the extent of the disease meant. We had… my parents actually rented a movie about Lou Gehrig himself, the baseball player, and we watched it and whenever I saw the seriousness of what was going to happen to my dad, it really, really affected me and I didn’t know how long he would have to live. I immediately just started crying and my dad, I remember, him just picking me up on the couch and just hugging me, and telling me that no matter what, that he loved me, and that God was going to be with me in this situation.

Rachel

Wow, that’s rough. And then, how long later after that was your mom was diagnosed with cancer?

Sarah

I found out about my dad’s when I was probably eight or nine, but then after I was 11-years-old in sixth grade, I remember coming home from school, and my mom, it just looked like she had a rough day at work, so I didn’t really think anything of it, but she immediately just started crying and told me that she was diagnosed with lung cancer. And I had no idea, again, how long she had to live. The doctor said, three to six months roughly so it was very… a very aggressive version of lung cancer and they said, that surgery was going to be very tricky. That surgery that they did on her, it was even worse than heart surgery.

Rachel

So they took out her lung?

Sarah

Yes, she only has about a third of her left lung still.

Rachel

That’s all? I don’t know, you could survive with a third of a lung.

Sarah

It’s very difficult. She has a lot of breathing problems, but she is a strong woman.

Rachel

So, when you’re first heard this. That’s gotta be so hard for parents to just try to be strong for their kids when they’re going through all that…

Sarah

It was a very difficult time, but that time was a growing period for all of us. We just grew as a family, we became a stronger unit. As my dad would say… Because of his military experience, we were a unit and we were soldiers.

Jenna

How long did treatment last?

Sarah

They immediately did surgery on my mom and she had to stay in the hospital for about 15 days.

Rachel

And you stayed with…

Sarah

My family

Rachel

Your other family, OK. So how are your parents doing now?

Sarah

My mom is currently cancer-free. She’s still surviving on one lung and the third of the other lung, but my dad still has the aggressive type of Lou Gehrig’s where he… All of his muscles are deteriorating very fast and he also has dementia and it’s getting worse every day. There are days that he doesn’t know what’s going on, and we’ll have to tell him what is happening.

Rachel

But your dad, your dad. I know for a fact is still… He’s been going out to ranger school for like six years, right?

Sarah

Yes, ma’am

Rachel

He goes out there and trains the ranger — what do you call them? Ranger….

Sarah

studs

Rachel

Is that really… what you call them? Ranger studs.

Sarah

Ummm.. yeah.

Rachel

They’re not proud at all.

Rachel

He goes out there a couple of days a week for camp and slogs through all the stuff with him them, and he’s determined to go out – not go down without a fight.

What is his motto?

Sarah

Ummm … Rangers lead the way.

Rachel

And never quit too. I think he says that a lot.

Sarah

Yes ma’am

Rachel

 

That’s awesome.

 

So when you were going through all of this, or even now, what do you do when you get discouraged?

Sarah

Well, I’m not going to lie, there are times where I just cry before the Lord, because I don’t know what’s going to happen. And especially during that time where I thought that my parents were for sure going to pass away and I didn’t know if I was going to have to learn to live on my own.

You know, not live on my own in the sense, like, live under a bridge somewhere but with my grandparents, I would have to learn how to take care of myself. But it’s just a day-by-day walk trusting that God is going to take care of me no matter what. If my parents were to have died back then, I know that God would still be with me today.

Rachel

I was thinking about this earlier, you were at that age, middle school, where all the hormones are going crazy and you’re emotional. That must have been horrible.

Sarah

Yeah, I remember there were some days where I would try to keep it bottled up and there was one day where I just could not hold it in any longer, and I remember just breaking down in the middle of English class, and my teacher was… She just came up to me and was like… “Do you need to be dismissed?” and I said, “I just need a hug” and I just remember her embracing me and saying that God would take care of me.

Rachel

Yeah, that’s hard stuff.

So, when you were going through all this, did you talk to anybody because it was probably hard to talk to your parents because you didn’t want them to feel bad right?

Sarah

Right . And I didn’t even really talk to my grandparents or my cousins or even my friends, I just felt like I couldn’t talk to anyone. My parents were my rock and I always told them, everything and I didn’t really feel comfortable with talking to anybody about that personal stuff. So I really just took it to the Lord and I just said “You’re gonna have to take care of me”. And He did.. you know.

Rachel

That’s awful mature for a middle school kid – a sixth grader. So, what did your friends and family do that helped you through this?

Sarah

They still took me to church, they loved me like my parents would. The unfortunate thing was they didn’t really treat me like anything was wrong. Sometimes people will, if there’s a bad situation, they’ll continue to kind of feel like depressed or in a valley and keep you in that valley. But honestly, they tried to take me out of that and tried to keep me focused on like — you could do this. We can still, we can do it together. We’ll pray for your parents and we’ll know that God will take care of them.

Rachel

So you didn’t feel like anybody was pitying you?

Sarah

No, no

Rachel

Did you ever feel like… So like you’re sitting in class and the kids around, you’re all talking about everything seems stupid they’re talking.

Sarah

Yes and honestly, no one knew that my parents were dying, no one knew that my mom was in the hospital on the verge of dead and just because I didn’t feel like it was their business in a way, but also no one ever asked, no one ever asked like, “Hey how are you doing today?” It’s just… I just realized how precious life was.

Jenna

When we have friends that are facing similar challenges what would you advise us to do to help them?

Sarah

Pray about the situation. Because every situation is different, every person is different and God will guide you, how to help them, and God will honestly just give you the words to speak to them, because our flesh doesn’t know what to say always. Just encourage them lift them up, you know. And just bring them before God.

Rachel

What did you learn about yourself through this process?

Sarah

That I could not do it on my own. And like you said, the maturity level, when it skyrocketed, because I was twelve years old, and I had always depended on my mom. to help me do schoolwork and study and I became independent in that aspect. I also became very independent in my spiritual life. I realized that I couldn’t depend on my parents to guide me in church, even though they did. It was just like I had to have a personal relationship with God, they couldn’t pray for me, they couldn’t read the Bible for me, I had to do that on my own.

Rachel

So what did you learn about other people through this?

Sarah

That no one knows what you’re going through and to always keep an open mind. See how they’re doing, emotionally, sometimes you just have to smile at them and say, “Hey, how are you?” And some people may choose to be honest and say, “You know, I’m not feeling good today” or “there’s a situation in my family, that’s not, you know, okay right now and I’m emotionally unstable”, but some people may not and they may just say, “Good. Okay” but you know just pray for them.

Rachel

Do you think it’s a safe… Do you think it’s safe in our society for people to answer these kind of questions?

Sarah

Say what?

Rachel

Maybe that’s a bad question, I’m just thinking ’cause you ask people and everybody’s like… “That’s fine”, that’s just a normal answer, right? People don’t feel comfortable talking to people, right?

Sarah

Well I feel like if you have a built relationship with them, they should feel comfortable but some people don’t feel comfortable because they feel like you have it all figured out when you don’t. They don’t see that part of your life.

Rachel

Yeah, I learned a lot. We have a kid that’s adopted and has trauma issues and I learned a lot about not judging people through that whole process. Before, I would go to the store and somebody would have a kid who was acting crazy, and I’d be like that kid just needs some discipline. But then God gives you a kid like that and you’re like, “Oh I was so bad to judge.” Yeah, it is, you don’t know what other people are going through it really I… Nobody really knows, even though you might think you know you really don’t know.

Jenna

What was the biggest challenge.

Sarah

Thinking every day that my parents could pass away. Just knowing that that was still a possibility.

You know what, my mom, she was cancer-free, after surgery, but my dad still… And Lou Gehrig’s disease is a very scary disease because you never know when that person can die. They can die early on in the disease without any effects or they could with Stephen Hawking, he had that and he died like 50 or… so, years after having it, you just can never tell.

Rachel

It’s very rare to just to survive long-time with Lou Gehrig’s disease. Yeah, so you are probably more aware than most kids your age of the preciousness of life.

Sarah

Yes

Rachel

So how has that made you a better person?

Sarah

To never take for granted every minute that I have with my parents and just people in general to enjoy the moment, to live for God in every moment that I can, and because life can seriously just be taken from you in a second.

Rachel

Right. And it’s not necessarily even people whose parents have terminal diseases. Like I could walk out there and have a car hit me right now.

Sarah

Yes, I’ve had friends who’ve had car accidents and just passed away and they were my age, or I had a friend who completely just… it was a complete freak accident and he just died within a week and he was my age, and I remember just praising God that I was still alive and I just cried at that funeral, and realized life is not, it is a vapor it seriously is. You cannot take any moment for granted.

Rachel

How has it changed the relationship you have with your parents? You said you guys were always close, right?

Sarah

Yes, but I feel even closer than normal kids are, in a way, just because it really bonded us. People have told me before whenever my mom and I are out in public, they realize the closeness between us. And they’re like… How is your relationship so well? And it’s like, “I don’t know how to explain it, to you, you can’t… you can’t know until you go through it.”

Rachel

So, the challenge of all of this that she went through, even though it’s bad as it was produced, something really special, right?

Sarah

We’ve been able to minister to several people. My parents and I, we sing at different churches, and I travel with my youth pastors and we minister to other people. And a testimony I always give is how God brought us through that fire. He didn’t leave us in it, he brought us through this situation, he didn’t leave us in a valley for too long, we were able to rise up out of that situation and it reminds me to whenever the devil thought that he had won, he didn’t.

Rachel

So, I was thinking the other day about people are as like… Well, I wish I had known someone was going to pass away. If everybody died when they were old, would we really value their life at the beginning? We would just be all wait until the end and then…

Sarah

And then be good to them… That’s not how it works. You should always strive to be there for them like the entire time. You love them as much as you can.

Rachel

So from watching you, you seemed to really, really love life and you want to do all the things, right?

Sarah

Yes

Rachel

Is that because of what you’ve been through or were you always like that?

Sarah

I was always like that in the first place. I was a very outgoing person, but it was because my parents were go-getters. My dad, Army Ranger, he always strived to be the best strived for many things musically and then my mom was the same way, and they were people persons, you know what I mean? They always wanted to get to know people and I kind of got that from them I think, but then going in that fire it just made me realize how much more of an outgoing person, I was. Because I couldn’t depend on my parents to talk for me in a way you know.

Rachel

You’re an awesome volleyball player, you’re a cheerleader, you’re an actress, you’re a musician.

I’m like is there anything Sarah can’t do??

Sarah

Oh yes, several things. People ask this all the time, and I really don’t know how to answer them, but I finally figured it out and Sarah cannot be perfect no matter what people think, Sarah cannot be perfect. Even though they think that I still have struggles I’m human, right?

Rachel

So you think people think you should be perfect?

Sarah

I’ve been criticized about that before, actually. I was bullied in middle school for being perfect and that was at the time, whenever my parents were going through the situation and it was really difficult for me because I was being bullying. My parents were in the hospital, I was living with my other family. It was a new environment, and it was just a storm, right, you know, and I seriously didn’t know how I was gonna get through it. Yeah, because I was like, “Wow you’re bullying me for being perfect”.

That’s not a thing. It says in the Bible it says you can’t be perfect, now. I was just caught off guard.

Rachel

I think that’s just insecurity, people’s insecurities, speaking out.

Sarah

yeah.

Well, the other thing too was no one wanted to be my friend.

Rachel

Because you were perfect? Or because they thought you were perfect?

Sarah

Yes, thank you for that.

Rachel

Because they felt like they didn’t measure up to you?

Sarah

Yeah, so that was difficult ’cause I didn’t feel like it was my fault, I felt like I always strived to be the best and glorified God. I never meant to glorify myself.

Rachel

I think of when you strive to be a go-getter, and you’re trying to do big things, there’s always gonna be people that wanna jerk you down. And they think you’re showing off, but you just have to live your life, you’re not responsible for them.

Jenna

And then this year, your senior you went through medical challenge of your own, you got injured, right at the beginning of the volleyball season. How have you processed through all that?

Sarah

That was a very difficult situation because at first I thought I had just sprained, my ankle, but whenever I started trying to walk, I would collapse and my ankle would keep rolling on me. So when the MRI came back, that I had completely torn my ligaments in my ankle, I was very, very discouraged. I immediately started crying and I felt like “Why me?” Especially during my senior year, it was just difficult. I didn’t know what I was going to do, I didn’t know how I was going to go through this situation. Even though it didn’t really seem like a hard situation compared to what I’ve already gone through it was just sad. I looked forward, I had expectations for senior year. And it almost seemed like it didn’t, I didn’t think it would happen like this.

Rachel

Right, like you had already been through enough.

Come on, give us a break

Sarah

And all your high school days, your senior year, it’s gonna be the best year. And honestly, it has but I wish I didn’t have to go through this, but also God has shown me several things through the situation, it’s doing me to have compassion for people who can’t walk thankful that I still have my leg.

You know, I’ve thought about that as well, and two its really brought my attention to walking. I love walking, I appreciate walking and I appreciate doing things for myself. It’s really humbled me because I’ve had to ask my parents. Hey, can you go grab this? The simple things. Can you grab me water out of the fridge? Can you grab me my makeup off of my counter? And it’s just been super, super difficult for me, definitely humbling but I’ve been able to inspire different people. People in grocery stores have come up to me and I’m just in my head, I’m thinking, Don’t trip don’t trip don’t trip, but they come up to me and say, “Hey you’re an inspiration because you are doing this and this, despite your injury.

Rachel

Also, you think about ……she plays, she played volleyball at the school my kids go to… and three of the main players were taken out this year with injuries.

Jenna

The seniors – three out of the four seniors were taken out this year.

Rachel

So, it was kind of like, “Oh no, what’s gonna happen”. But I must say that the others really pulled through and they might not have gotten that opportunity. If you three, having an injured right.

So you gave them a chance to have an awesome year.

Jenna

What are your plans through the future?

As of right now I have applied to Auburn University and the University of Florida. I’ve been accepted into the architecture program at Auburn University. I’m still waiting on University of Florida to send me an acceptance letter, but we are praying that God guides me.

If it were my choice, I would love to stay in Florida so that I could see my parents more often, and my future future plans. I’ve been really praying about this. I would like to become an architect because I would like to build different churches in different foreign countries or even orphanages and do just mission trips and that aspect.

Rachel

That’s an awesome dream. Yeah, we’ve had some friends that have gone done that they build tiny houses in Honduras and little churches. It’s $1,00 to build a house for somebody down there. It’s not like a house here, right.

It’s like bare bones.

It is an awesome, an awesome goal.

So how could people reach out to you if they want to contact you?

Sarah

I have an Instagram. It is sarah.mac15 and I also have a YouTube channel, but it’s under my mom’s name. So if you would want to subscribe to my YouTube channel, it’s Karen Spayd, and you can find my dad on Google, he has several articles that have been written by him one being written by Washington Post on The Ranger Hall of Fame and different things. Also WEAR (channel 3) did an interview for my dad.

Rachel

Yeah, he is a tough cookie. I love your dad and your mom.

Alright, well, that’s about it for today. I want to thank you for coming here and sharing with us today Sarah. I just want to say how much I admire your quiet strength. It’s obvious that you possess a depth that most kids your age don’t have. It’s something that can’t be bought or borrowed. You only possess it once you have gone through difficult trials and have come out on the other side – kind of like a war veteran. And I know you are not perfect. I was just joking about that. But I do see that you work really hard to do the best you possibly can in everything you do. And we wish you all the best in your future. You are going to change the world with the gift that is you.

Hey friends, thanks for listening to the podcast today. I know the subject is one that we wish we never had to talk about. If any of your guys are going through hard times we encourage you to reach out. Find a safe person like a teacher, pastor, coach or family member that you can talk to. If you can’t find someone, reach out to us and we will work to find someone in your local area to connect you with. We aren’t meant to go through life alone. You can get through this. We believe in you.

If you want to contact us, you can always find us on our website at Bedaringlife.com or on our Facebook group at Be Daring Life.

Jenna

If you really like is, and you really want to let the world know how much you like us. Give us a review on iTunes. The more reviews we have, the more visible our podcast is and that helps others find us in the great community, we are building.

Rachel

Thanks so much for joining us today.

Jenna

And remember to go out and Be Daring!

“Do or do not. There is no try.” ―Yoda