Zibby Owens: Elizabeth Gerlach is the author of the children’s book series Ben’s Adventures about a young triplet brother who uses a wheelchair but loves to dream up fun adventures with his family and friends. The series was inspired by her son Ben who passed away in 2016 at age three. The two books in the series so far are Under the Big Top and Day at the Beach. Elizabeth is a special needs advocate and fundraiser for the Ben Smiles Memorial Foundation which she founded. A former advertising and marketing exec with an MBA in marketing, Elizabeth currently lives in the suburbs of Chicago with Ben’s triplet siblings, Colin and Ava. Her husband is recently back from being deployed in the Middle East and is now in the Army Reserve.

Welcome, Elizabeth. Thanks so much for coming on “Moms Don’t Have Time to Read Books.”

Elizabeth Gerlach: Thank you, Zibby, so much for having me. I’m happy to be here.

Zibby: My real name is Elizabeth too, just so you know.

Elizabeth: Is it? Great.

Zibby: Yeah, so if you ever want to steal a nickname and go through the pain of —

Elizabeth: — Zibby is not one I’ve heard before. I’ve gotten Liz. I’ve gotten Lizzy. I’ve gotten Beth. People ask me always, do you go by Elizabeth? I’m like, yeah. We can thank my mom for that. It was never shortened.

Zibby: You’re lucky. It’s sort of been a pain having to shorten it. Anyway, it’s nice to talk to a fellow Elizabeth. You have a very interesting, inspiring, sad, moving, happy, everything story. I am thrilled to be talking to you about all of it. Your book series, Ben’s Adventures, why don’t you tell listeners how you started the series? Why don’t we just start with that and what the children’s books are about?

Elizabeth: The children’s books were inspired by my son Benjamin. I had triplets very prematurely at just twenty-five weeks and two days back in 2012. We were one of those families where you hear of preemie babies and they’re in the NICU for four to five months. We were one of theirs. I’ve been through that whole NICU rollercoaster. You don’t really know. You literally live day to day to day. You don’t really know what’s going to happen. My son Ben, at that time he actually had a lot of complications, a lot of infections. A lot of stuff happened to him. Whereas the other two, if I can say, they had your typical NICU stay. They had a couple little things that happened, but nothing really as severe or significant as Ben did. He had a lot of complications from the prematurity. Then ultimately at about ten months old when he wasn’t meeting his milestones — he wasn’t rolling over, bringing his hand to his mouth or holding his head up or all of those things that kids at ten months old should do. We had been to a ton of doctors and ultimately was diagnosed with spastic quadriplegia cerebral palsy, developed epilepsy, needed a feeding tube, was nonverbal, may have had some vision impairment. He had a lot of medical needs and a host of things. He was going to be a kid that required a lot of care, which is fine because he was mine. I believe things happen for a reason. I was his mom. You’re going to do everything you can to take care of him.

Over the course of three or four years, he started developing respiratory problems. A runny nose or a cough or a sniffle for a typical kid, for him, it meant a severe respiratory infection and a visit to the ER and PICU stay. We probably had six or seven PICU stays over the course of about a year and half or so. With each one, he would get sicker and sicker. He ultimately required oxygen at home. The last one, he developed this infection that he just couldn’t survive. We lost him May 2nd, 2016. I spent a year of just not even knowing how to step forward. I didn’t want to get off the couch. I’m thankful I had the other two because as mom, you’re forced to survive and forced to move forward and forced to just keep things going. I’m thankful for them, that I had them. The idea hit me one day to start a foundation. We started Ben Smiles Memorial Foundation. I can talk about that a little bit if you wanted me to. I also then thought, what am I supposed to be doing for him? As a special needs mom, you know your purpose is to take care of your child. My child, for his life, was going to be dependent on us. He was going to have all these additional needs. My identity was to take care of him. Then one day you wake up and he’s not there. Holy cow, now what am I supposed to be doing? We started the foundation.

Then I was driving in my car one day and I thought it would be really cool to do a children’s book to create a legacy for us or for him or give tribute to him and show a kid in a wheelchair. You didn’t really, at the time, see a ton of picture books that showed all types of people, all types of kids with different needs or different abilities. I thought that would be really cool to represent, in my way, a kid in a wheelchair that had different needs. I didn’t want the books to be about disability, just to be about how he lives in a wheelchair. I wanted it to be about a child that was a kid even though he was in a wheelchair. He could have friends. He could have dreams. He could enjoy his life. He could have fun. The premise of my books is that it’s Ben’s Adventures. Ben’s in a wheelchair. He dreams up all of these fun instances.

The first one is, he dreams up a time at the beach. I grew up going to the beach. I’m from the East Coast originally. All of our family vacations, we went to the beach. We’re outside of Chicago. Even though we live in the Midwest, we always took the kids to the beach. Even though they’re young, we’ve been to the beach. That was the premise of the first one. Again, the first one I approached as a tribute to him. How can I memorialize him or represent disability and still have it honor our family and pull from our own experiences and what made us happy? That’s where the beach concept came from. Then the second one which just released in September of this year is a tribute to the early childhood education teachers. Ben, he died right before his fourth birthday. He was in school. They were in preschool together for a year. He had a phenomenal one year of school. He thrived. He learned so much. He showed me things that I didn’t even know he would be able to do. I wanted to give tribute to them.

Zibby: Oh, Elizabeth. I’m so sorry. This must be so hard to talk about. I’m so sorry for your loss and your experience. My heart is just aching for you.

Elizabeth: Thank you, but you know what? I always tell people, because you feel like — I’m going to try to get it together here so I’m not a blubbering idiot.

Zibby: You do not have to get it together at all.

Elizabeth: When you talk about a child’s death, people don’t want to talk about that. I feel like people shy away from it or they don’t talk to me. They don’t ask questions about it. They dodge around the topic. I always say I’m an open book. I welcome any chance to talk to him. I’d love to be able to tell people about him.

Zibby: I’m so sorry.

Elizabeth: No, I’m good. I’m smiling.

Zibby: Tell me about him. Tell me a little more about Ben. I saw in all of your books and everything and got a sense from your website. What made Ben so special?

Elizabeth: Well, he was mine. I thought he was perfect even though he had all of these challenges and the physical junk. Day-to-day life was hard. We had a ton of appointments and a ton of therapies. He was on a special diet for the epilepsy, but he smiled. He just had the best smile. He laughed. He was ticklish. We would do things to make him laugh and smile. That’s where premise of Ben Smiles, the name for our foundation came from, was Ben Smiles because he had the best smile. That’s what I want people to know about him. He was happy despite all the other stuff.

Zibby: I’m sure you made him as happy as you possibly could. You’re obviously so devoted. There’s so much love that you still feel. Oh, my gosh. Tell me a little more about the foundation you set up. That’s a beautiful thing that you did.

Elizabeth: Thank you. He couldn’t really move his arms. He couldn’t grasp because he couldn’t control his muscles. His muscles were so tight. It was difficult for him to relax. When kids are young, they want to play with toys. That’s how they learn, is through play. They play with cause and effect toys. They grasp things and manipulate things. In his case and a lot of kids’ case, they just can’t play with typical toys. They make what they call adapted toys or switch toys, if a child can hit a switch or maybe they can move their elbow so they can tap a switch with their elbow. In my son Ben’s case, he was fisted. His natural position was this, so he couldn’t really use his fingers. He could move his arm an , bump a switch or answer a question or whatever it is. They make adapted toys, but they’re expensive. Insurance isn’t going to cover toys. They cover a lot of stuff, but there are things that they just don’t cover. Fortunately enough, we were able to get some toys and some extra tools, resources for him to have in the house.

Many families, they aren’t able to. It was so stressful for me as a mom around Christmas. You wanted to buy gifts for your kids or at birthdays or whatever, these times of the year where you want to have new things or stuff for your kids. For some people, it’s just impossible. I was driving in my car one day. I’ve realized I have all my best ideas when I’m driving or I’m in the shower or I’m doing something where I can’t act on it immediately. I was driving in my car. I got this sensation, this tingle. It’s even hard to describe. The name Ben Smiles popped into my head. I don’t know beliefs of your listeners or whatever. I just thought, this is my message. What am I supposed to do with this? I had the name Ben Smiles. Then it was a question of, what is that supposed to be? I started thinking about it. The toy idea developed about a year later. He died in May. Then the following April, we met up with some people here that could help us do the foundation, help us set things up. It launched April of 2017.

Zibby: Wow. That’s amazing that you do that. Have you been able to connect with any families who have been able to use the toys that you basically —

Elizabeth: — Oh, yeah. I don’t have an exact number just simply because I haven’t added them up. This week, I think I’ve gotten six new requests for different toys. They trickle in throughout the year, but Christmas is a big time. Last Christmas, we shipped out eighty-two toys or something.

Zibby: Wow. That’s so amazing. Do you do it right there? Do it do it from your house?

Elizabeth: It’s me at my kitchen table.

Zibby: No way. Oh, my gosh.

Elizabeth: It’s me taking in the order forms. You try to really cater the toy for the child. Some kids have epilepsy, and so they can’t have any toys with bright lights or flashing lights or anything like that. Maybe a child has vision impairment, so movement is less important but they need something with music. I try to really cater the toy to the child’s needs and pick something that’s going to be most useful and joyful for them. Last year, I was really stressed. I’m getting the toys and preparing everything and boxing them up and taking them to the post office. Every time I would walk into the post office last Christmas with six or seven boxes, the postal lady was rolling her eyes. We became best friends. I was in there so frequently. It’s fun. No, it’s me. I sit here and I do it all, not to sound like —

Zibby: — You don’t sound anything. You sound amazing.

Elizabeth: A smart person might ask for help and try to delegate. I’m not there yet.

Zibby: I find delegating very difficult.

Elizabeth: I’m one of those control — I think that’s why I went down the self-published route with the book. I thought, I want to have control over the story, the illustrations, the timeline, the marketing, the everything.

Zibby: Did it ever occur to you to go to a traditional publisher? You just knew from the start?

Elizabeth: No, not really. By the time I started thinking about doing a children’s book, I started seeing, like in different Facebook groups or Facebook friends, people were mentioning, “I just released my book,” or whatever. I thought, wow, I just had this idea. Now I’m starting to see things around me that are talking about self-publishing or children’s books. I thought this is a message that I should try, go down this route. Reached out to a Facebook friend of mine and started asking questions to her and then just figured it out from there.

Zibby: Then you launched a Kickstarter campaign to raise the money?

Elizabeth: I did. The first one, I did not. The first one, I funded. I did work with a hybrid publisher for the first one. They helped me through the process. I’m still learning as I go. With the first one, that’s where the control aspect comes in. They were great with the design and the creation and everything. Then the publishing portion of it, I started to ask questions and realized I just wanted to be able to handle everything myself versus rely on somebody else. For when I decided I wanted to do the second one, I did. It’s expensive. As a self-publisher, you’re funding everything out of your own account, out of your own money. I decided to do the Kickstarter just as a way to build it up, maybe gain some more followers, talk about it, have people preorder. It does then give you some cashflow to be able to print the books. It’s still, it’s expensive. That’s why I did the Kickstarter, just to help with preorders and help to fund the second one.

Zibby: Meanwhile while you’ve been going through all this, your husband is in the military and was deployed in the Middle East for a while. Now I guess he’s back.

Elizabeth: He’s back. He’s been in the army. He’s an Army Reserves and has been in for thirty-two years or something like that. He and I have been married, this January it’ll be nine years. He had two deployments before he and I met. Throughout our relationship, he had just been in the reserves which basically meant you go for a weekend or you have certain duties you have to fulfil throughout the month and go on certain trips. Then he had this opportunity. His whole unit had this opportunity to do a deployment to Kuwait. We talked about it. It seemed like a good way to build his military resume. He went and deployed July of 2018 and got back May of 2019. He was gone ten-ish months.

Zibby: I know this is an overly simplistic question, but how do you do all of this? Your husband’s gone. You’re still mourning the loss of Ben. You have, essentially, twins now. I have a set of twins. It is not easy. You’re managing this foundation from your kitchen. You’re writing children’s books. How do you do this without just — I feel like I’d be sitting on the bathroom floor just crying over the stress. How do you get through it all? How do you do it? What inspires you and keeps you going?

Elizabeth: I don’t know that I have a good answer to that question other than just each day. My kids, they’re in second grade now. They’re seven years old. They are out of the home for a good portion of the day. I always tell people it’s the fastest six hours of the entire day. I’m sure you — how old are your kids?

Zibby: I have twins that are now twelve and a half. I also have a six-year-old and a five-year-old.

Elizabeth: So you know. When they first went into kindergarten, they were going to be gone for the school day, I thought, wow, I’m going to get so much done. My house is going to be so clean. I’m going to be the most organized person. I can focus on the foundation more. It was not the case at all. It’s the quickest six hours. I completely love my children, obviously. Somehow, I’m just not as productive as I ever thought I would be. If I have something to do, I don’t mind doing the work. You just handle it. After school, my kids have so many activities. We’re running back and forth to gymnastics and ballet and swimming. There’s all kinds of stuff going on.

Zibby: Did they ever express their emotions about the loss of Ben from their perspective? Were they too young?

Elizabeth: I don’t know. He’s still so very much present here. They were three. They were almost four. He died six weeks before their fourth birthday. As triplets, and I know with your twins, I’m sure, you feel they have an innate connection. There’s something there between them because they’re twins. I don’t know. I really struggled with how to explain it to them when he wasn’t coming home from the hospital. He was always here. They accepted Ben for who he was. He needed medical care. He needed to use a wheelchair. He wasn’t exactly like them, so to speak. Because he had been so sick, I basically explained it to them that, “You know how he’s been so sick? He can’t breathe. His lungs, his body just can’t work anymore, so he’s gone to live with Jesus. He’s gone to heaven to live with Jesus.” In their mind at three years old, they’re like, “Okay. When he comes home, can we go to Chuck E Cheese?” Then I would have to explain it again. “He’s not coming home. He’s living with Jesus.” “Okay, yeah. But when he comes home, can we do this? I’m getting this book. When Ben comes home, I’m going to give him this book,” or whatever it is.

For them at three, he was their brother. He was a part of our life. He was always at home. Probably about six to eight months or so after that, they stopped saying “When Ben comes home.” There had been that period of time where he wasn’t here. They were getting more used to it just being the two of them. I honestly don’t know if they have any clear or real memories of when their brother was here. We look at photos all the time. We look at videos. Thank you to Facebook for showing me what happens on this day back in — we talk about him all the time. They’re very proud of the books. They know he’s their brother. I don’t know emotionally if it really impacts them because I feel like he’s still here. We still talk about him. He’s just present in a different way.

Zibby: Does anything help you aside from the charity? What helps you the most in day-to-day life? How could I help you? Now that I am so upset I can’t hug you through this Skype call, what can your friends do? What can we as a community do? How can we help? How can I help?

Elizabeth: I don’t know if there’s anything that people can physically do. As a mom who’s lost a child, I’m sure there’s people out there that can support me. will attest to this, you don’t recover. You learn to live in your new situation. For me, helping me has been being able to give to other people and honor him in that way and see smiles with other kids that are holding the book or that are playing with the toy or that are like him. That helps me. Some days are good. Some days are okay. I can go for days and not have a breakdown like I’m doing right now. Last night, I went to a fair, like a holiday market at a school, trying to talk about the books and talk about the foundation. For three hours, I spoke to people about the books. I told them about Ben. It was completely fine. They would be happy and make jokes. Then you get in your car and you have to have a little bit of a release. I go through days where I’m good. Things seem normal. Then something might happen or have a memory or have a thought of, how am I never going to see my kid again? How am I not going to be able to hug my son again? I have that kind of question. As a mom, you just figure out how to step forward. That’s what I had to do two years ago. This is our existence now. This is life now. How do you still step forward? How do you progress? How do I survive for my other children? That was my way, doing the foundation and doing the books and being able to talk about him.

Zibby: I feel so honored to get the chance to talk to you about him, to get to know Ben more, to get a little slice of your story. I think what you’re doing, as I’m sure you know deep down, is just the most amazing thing ever. I’m so impressed with you. The books are great, by the way. I know that we’ve not really discussed the actual books. You’re a really great writer. The illustrations are fun. My kids love the books. It’s really, really impressive. I am so sorry for everything you’ve been through. Thank you for being so open and sharing. I’m going to get off this Skype interview and go donate to your foundation. How do people donate? What’s the website?

Elizabeth: It’s bensmiles.org, so B-E-N-S-M-I-L-E-S.org. The Ben’s Adventures books are available on Amazon. Then also, I have a website, bens-adventures.com as well.

Zibby: Elizabeth, thank you for coming on “Moms Don’t Have Time to Read Books” and sharing your story and all the stories of Ben.

Elizabeth: Thank you so much for having me.

Zibby: Of course, my pleasure.