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In this podcast episode, Zander Sprague engages in a conversation with Allie Shoemaker, formerly Sobiech, the older sister of Zach Sobiech, the inspirational figure behind the Disney movie “Clouds.” Allie reflects on her experience watching the movie, discussing its accuracy and emotional impact. The conversation delves into Zach’s legacy, particularly the Zach Sobiech Osteosarcoma Fund, and how it has contributed to osteosarcoma research. They also explore sibling grief, coping mechanisms, and the importance of finding purpose and making meaning out of loss.

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Making Meaning Out Of Loss With Ali Shoemaker

Remember. Epic begins with one step forward. I have the pleasure of being joined by Allie Shoemaker who you may not know.

I was formally Sobiech. My name got cool when I got married. I’m Zach’s older sister. I’m the one in the movie who’s eating a lot and texting my future husband. It’s pretty accurate.

For people who don’t know Zach Sobiech, there was a movie that Disney made called Clouds. It is a beautiful movie. I re-watched it. It’s a beautiful movie about the end of Zach’s life, the music that he wrote, and this beautiful song, Clouds, that subsequently went to number one on the iTunes chart. The first question I’m dying to ask you is what did you think of the movie?

What’s really interesting is I watched it the same day that everybody else did, and I did that on purpose. I had the chance to watch it a couple of times beforehand, but I watched it with my 2 sons who are 5 and 2. I  wanted to be by myself and have that be a part of the experience with my sons. I thought Justin Baldoni did a phenomenal job with the movie. He captured Zach’s character so beautifully. While some of the events are a little jumbled or meshed together, the atmosphere and the whole meaning behind it were conveyed. I won’t lie. I was a little skeptical at first when my mom was talking about a movie. It was beautifully done. I was pleased with it.

I certainly never knew Zach, but from what I could tell, it seemed very real about the events going on, how he was dealing with stuff, and how the family was dealing with stuff. I’m not going to spend the whole time talking about the movie. If you want to watch it, it’s on Disney+. It’s a great movie. If you don’t want to watch it but want to hear Zach’s song, it’s called Clouds. You can find it on streaming services. I wanted to know. You’ve got some other siblings?

EPIC Begins With 1 Step Forward | Making Meaning From Loss

I do.

Are you the oldest? In the movie, it wasn’t really clear. It looked like there was an older brother and you, but I’m like, “Okay.” Where are you in the whole Sobiech siblings?

I am the oldest and the shortest. I’m the one who looks like I’m fifteen, and I will for the rest of my life, hopefully. It’s me and then Sam is second, and then it was Zach. He was the third. Grace is the baby. She’s eight years younger than me. We’re all within that eight-year span.

One of the things that I focus on that you and I, unfortunately, share in common is we’re sibling survivors. We lost a sibling. How are your other siblings doing?

It’s remarkable. We’re all doing really well. It’s weird and strange to say, but I feel like our family is a lot closer after this whole event, like each of our individual relationships, Grace is in school. She is going for graphic design. Sam is doing something super cool and nerdy in science that I probably can’t explain well. We’re all doing pretty well.

The Zach Sobiech Osteosarcoma Fund

That’s great. I should mention because some people may or may not know, Zach died of osteosarcoma. One of the cool things that Zach did before he died, or at least portrayed in the movie this way, is that he started the Zach Sobiech Osteosarcoma Fund. Take a moment and talk a little about that and what that fund has been able to do.

That’s something that really materialized right before Zach died. It was something he wanted to do. It was something that wasn’t at all on our radar. We are like we used to be before Zach, a little family of hobbits that didn’t do anything. Science was something we were super interested in at the time, but it made sense and it fit well.

I don’t know the exact dollar amount that it’s made so far, but we have garnered a ton of donations for the osteosarcoma team at the University of Minnesota. I know each of them personally. I’m really lucky to know them because I started working at the Children’s Cancer Research Fund a year and a half after Zach died. I had the opportunity to work in the marketing department and help tell the story of what these scientists are doing and why research is so important.

There have been some really awesome discoveries, understanding the genetics behind it and then seeing if there are drugs out there that we could potentially use to help with that. There have been some great breakthroughs that way. It was wonderful for me, especially at the stage of grief that I was in, to make purpose out of everything that had occurred and be able to see some tangible awesomeness happening from that.

 

Make purpose out of everything.

 

Another thing that’s similar is my family, after Lucy was killed, started what’s called the Charisma Fund. For the last several years, we’ve been doing really cool things in Lucy’s memory. I’m sure you share the same feeling that it feels good to focus on the rainbow that was Zach’s life and perpetuate that by doing good and not focusing on Zach’s gone.

I know personally that it is so much more rewarding for me to be able to fund really great organizations and do great things in Lucy’s name. It’s so much fun, especially when I find an organization or we, the board, find an organization. I get to call and say, “You don’t know me, but we’re going to make a donation. What’s the address I should send the money to?”

One of the big things we’ve done since right after Lucy died was have a scholarship at the law school she was at, John Marshall Law School in Chicago. We fund a graduating attorney going into public service. It helps to offset some of their student debt so that they can go into public service. Public service is important but unfortunately doesn’t always get those assistant DAs. Those government jobs are important. Those attorneys are doing fabulous work on behalf of so many people who are in need, but they don’t get paid as much. When I saw that in the movie, I was like, “Oh my gosh.” I could relate to it. It feels so good to do good in the memory of our sibling.

Choosing To Continue

It was a children’s book that made me decide to approach grief that way. Right before Zach died, we had a social worker come in for Grace, and Grace did not want to go by herself. She was fourteen at the time. I went and sat with her, and the social worker pulled out this book called Rabbitynes. I don’t know if you’re familiar with it. If you haven’t read it yet, you should get it.

It’s about a rabbit who disappears and all of his friends are left with this deep dark hole and they don’t know what to do with it. Rabbit loved to do music and paint. They go in this hole that he left, which is so metaphorical, and all the materials that he used to use, and then they make their own beauty out of what he loved. It’s sad, but that has changed my life as a 23-year-old. I was like, “I have a decision here to make. I can either crawl in this hole and do nothing with it or I can follow Zach’s example and continue to make beauty wherever I end up.” It doesn’t have to be big and extravagant. You have to be willing to be generous with yourself.

I couldn’t agree more. You’re right. It is very much of a choice. It’s like, “Do I choose to continue living my life?” You’re a little busier because you have some work to do for Zach. I have work I’m doing on behalf of Lucy. That whole choice is how I got into writing my book about sibling loss and doing the work I do to raise awareness for sibling loss and help other siblings. It feels so much better to choose to do something versus not do anything.

Life is a participatory sport. If you didn’t do anything and you sat in bed with the covers up around your chin, the day would still go on. Your life would still be going on. You’re not participating, but it’s still going on. You’re right. In my book, I talk about how you have a choice. You can pull the covers up over your head and ten years go by. When you decide that you’re ready to deal with everything, however, ten years have gone by.

Time is a valuable resource.

Here’s one of the things I want to ask you because it does lead to a part of our discussion. Do you find that people are always asking how your parents are? How are your parents doing?

Yeah. My parents are doing really well. It’s cool to see how both of them have dealt with it. They both decided to follow the same trajectory as me. We either make meaning out of this or we don’t. All of us dealt with grief so differently. I was more like my dad. I had a little bit of angst and anger about the whole thing.

My mom is such a cool person in general. I’m so grateful for my mom because I would be a much different person without her. She decided from this very diagnosis to make meaning out of it. That helps lead the whole family. I credit her for a lot of us all being okay because she was such a solid foundation. She has her hard days too. It’s not perfect. All of us dealt with a lot of anxiety and whatnot. We’ve dealt with that in different ways. Overall, they’re doing really well. She works for a children’s cancer research fund too and works with other families. That’s her way of making use of her experience.

I ask about how your parents are because I’m originally from Boston. I was living in Boston at the time that Lucy was killed. Many people know my parents. I’d be on the street and they’d stop and ask, “How are your mom and dad doing?” Yet, no one asked how I was doing. That’s a common thing that happens for sibling survivors. Everyone focuses on the parents and no one or very few people focus on the siblings.

The Longest Relationship In Your Life Is With Your Siblings

Here are some startling facts. The longest relationship you’ll have in your life is with your siblings. Your siblings, for good or for bad, no matter what your relationship with them is, they’re probably some of your best friends. They know you better than you know yourself. Think about when you would argue with Zach. When you had an argument, you did not start off nicely. You are swinging for the fences.

The longest relationship you’ll have in your life is with your siblings.

You are saying the things that you know are going to hurt him and he’s saying the things that are going to hurt you. That’s how siblings are because you have 100% of the dirt on each other. You will use it to win the argument. I’m interested to know your experience with people not acknowledging your loss. To quote my good friend, Dr. Heidi Horsley, “When you lose a sibling, you lose your past, your present, and also your future.”

That’s so true. I think about that a lot. Not a lot of people ask about it. They ask how your parents are doing. I have struggled with that because you think to yourself, “Was this a valuable relationship? Do I deserve to be this sad? At least it wasn’t my kid.” You’re automatically pushed into the background, but you still feel that cavern.

Your loss is no less significant than your parents. It’s different. I went through this myself many years ago where I started to wonder whether my grief or my loss was less important. It’s not less important. It’s equally as important. Our siblings are important pillars in our life. I’m not sure if you’ve ever heard of the Compassionate Friends.

Our siblings are important pillars in our life.

It’s familiar. Tell me about it.

They’re an organization which is for families that have lost a child. It’s for parents, grandparents, aunts, and uncles. The best part is we have this awesome sibling group. It’s the pivot that was made during COVID. Every night, or if not, at least six nights a week, there is a sibling Zoom meeting. There’s writing and art. It doesn’t matter.

Inevitably there are people who, after that’s done, hang out. It’s what makes it really cool. I did not discover Compassionate Friends until a few years ago. These siblings are my brothers and sisters. They are great. I want to let you know. You could let your brother and sister know here’s a place where you can come in and everybody gets it.

That sounds beautiful.

You walk in and you’re like, “Fifteen people asked about my parents. I was having a crappy day and no one asked how I was.” There will be people going, “I feel you,” and stuff. I bring that up to you as yet another resource or an awesome resource for you and your brother and sister and anyone else who’s like, “I need a place.” When we’re having in-person conferences, going national is like going back to your family. Here are these people that you don’t even necessarily know. I walked in and I knew no one. I’m old enough to be a lot of these people’s dads. Yet, they’re like, “You’re a sibling. That’s all that counts.”

That’s so cool. You’re probably the first resource I’ve found that’s like adult-ish siblings. There are a lot of little kid sibling things out there that I’ve run into, but you’re the first since Zach died that I know about.

There we go. I do want to let you know. If you’re having a bad day or whatever, honestly, call me. Reach out because I get it. I get how hard and how lonely it feels. That’s a big part of what I’m trying to do, raise awareness to say, “Ask siblings how they’re doing.” The lack of acknowledgment of our loss leads to mental health issues. I could never do a study to prove causality but also self-medication and stuff like that. It’s horrible to say, “I had this tremendous loss and no one’s saying anything to me about my loss. Everyone’s about the parents.”

The lack of acknowledgment of our loss leads to mental health issues.

I hope I never have to know what it is to lose a child. I can’t imagine what my mom and dad went through and my mom still goes through. However, what my sister and I go through, what you’re going through, what your brother and sister go through, and anyone who’s lost a sibling is equally as important. Knowing that there are other people who get it is so much better. I’m sure you’ve had those days where even your close friends who want to help you don’t get it. When you get to talk to someone who you start to talk to and they start to nod, you have that like, “You get me. You know what I’m talking about so I don’t have to explain everything”

They fill in the blanks for you.

Preparing For Things Not To Be The Same

You get to talk about the thing that you need to talk about because there’s that shared experience of, “I get that.” Be it an anniversary, Christmas, or whatever, going to someplace that you went to with Zach and you haven’t been back there, and then you think, “This is going to be hard.” What I like to tell people with Christmas or whatever who are like, “Christmas is going to be so hard,” it doesn’t have to be hard. It may be. Zach’s birthday may be hard, but it doesn’t have to be hard because it’s that day. Frankly, those anticipated days are easier because we can put our armor on and be braced.

You’re prepared for it not to be the same.

It’s more the unexpected things in our days and weeks where a song sends something. The train is off the tracks. It’s sometimes the stupidest little thing that throws your day completely. You’re like, “Oh my god.”

That happened to me right before the 4th of July because Zach was the one who always got the fireworks, always did stuff up in the road, and whatever.

He’s a boy.

It was so quiet. The silence really affected me. The 4th of July is the 4th of July. It’s not too fancy, but it hit me then. Also, this time of year too because this is when he got sick. His death anniversary isn’t as bad for me as the time leading up to it and thinking about it. That was the worst point.

Here’s one of the things that I wanted to talk to you about. Your experience and my experience are different in this way. Lucy was gone. There’s the good and the bad of that. She didn’t suffer, but she’s gone. I don’t get to say goodbye. You watched Zach get sicker. You got to say goodbye. There’s good and bad on either side.

For me, it’s the day or the angelversary that can be hard. I found that with time, it’s not as hard. The day she was killed also happens to be my best friend from college’s birthday, so it was always hard. I was trying to help him celebrate ten years. It was really hard because I was so devastated that day. There’s so much to this. I have a question. Do you guys sit around and tell stories about Zach as a family and process stuff that way?

Yeah. It was really cool. Sometimes, it happens organically, like a song will come up on the radio or someone will say something that reminds us of Zach.

The song comes on and you’re like, “Really?” The one bad thing is you honestly could go on with your day and all of a sudden, there’s Zach’s voice singing. You’re like, “Oh my God.”

Clouds have been played so often that it’s not as hard to hear as maybe his other music. It’s like the pop song you hear over and over. It’s like, “Ugh.”

It’s a great song.

We love it. When you hear it all the time, you start to like it too. It was really cool because my mom did a republish of her book. The publishers wanted a list of music Zach had listened to. It was super cool. I have to tell this story. It was Father’s Day 2023. Before this, we ripped my parents’ old couch. We lost a toy of my son’s. We had to rip it open and try to find it. We didn’t find it. It’s still missing. We did find Zach’s old missing iPod that we thought was gone forever. We couldn’t turn it on. One of my husband’s friends ended up being able to fix it. I was able to give that to my dad on Father’s Day 2023.

How nice.

It was super cool because music was so much a part of Zach. Delving into that part of who he was and being able to do that again was cool. Our family, what we did for my mom because she needed to put together a music list of his favorite songs, was we got to look through this iPod together, listen to the music, and be like, “This is one of Zach’s favorite songs.” There were a lot of memories along with that. That was a cool experience because that was one of the first times that all of us were there talking about it.

 

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