We met Sarah Curry Rathel at the Ronald McDonald House, where she works with critically ill children and their families. She tells us these children are her heroes, and through her nonprofit, the Smile Books Project, she captures their stories as heroes in their own books. She is a mother, storyteller, and legacy-maker.

Interview by Kelly Carrigan. Photography by Angie Lipscomb.

What is at the heart of what you do?

I work with critically ill kids and tell their stories. A lot of things have been taken away from them when they get diagnosed with something and are suddenly in the hospital and can’t do things anymore. Some kids don’t know anything other than being sick. They were perfectly normal, and then something happened; they don’t have as many freedoms anymore and they tend to get really depressed. I give them a voice again, a platform to share their story any way they want. Maybe they don’t talk about their illness in their book and they want people to know they’re more than that, or maybe they want people to learn about a rare disease that it is important to them.

And you do that through your Smile Books Project. Can you tell us more about that?

My illustrator and I started the nonprofit a couple years ago. We interview kids, write their stories, and turn them into heroes. We let their friends and families purchase the book, but the money is all donated back to the child for their medical care or whatever they need. It’s a way to get their message and legacy out there and give them a chance to raise money and awareness for what’s going on in their life.

What have you learned about adversity and legacy from these kids?

The thing that I learned from the kids that I work with – and even some adults – is that you never know what is going to happen. I’ve been told by kids that they just don’t want anyone to forget them. I can’t do anything about what’s happening to them, but I can give them a way to make that fear go away. Being able to do that for them is probably the most important thing that we can do.

I’ve been told by kids that they just don’t want anyone to forget them.

These kids overcome so much and they don’t complain. They don’t look at their lives as if something terrible has happened. They talk more about how to get through it, the positives about what they are going through, the other kids they’ve met, what they’ve learned, and what they want other kids to know. For me, seeing these kids go through so much and being so appreciative, thankful, and generous and so caring about other people has been a huge – I wouldn’t say “surprise,” but it’s just heartwarming. You see these kids so young and they have all these thoughts and qualities inside of them. You think about the world today, hoping that this will continue. You know it’s there: It’s in people; it’s in these kids.

What do you hope to carry over from these experiences into your own life?

When I was growing up, I worked four jobs through college to pay for school, and it was hard, but that was how I got into doing what I do. When I was stressed out and going through all of this, I started meeting these kids, and my outlook completely changed: “This is not the worst thing happening in the world.” It’s taught me to be grateful for every day when I see kids that are perfectly fine one day and are not here the next. It’s a very eye-opening experience to see that happening multiple times over 15 years. If I can make them smile or laugh, it makes me feel good.

What chapter in your own story do you feel like you’re living right now?

I feel like it’s just starting. I don’t want to say this job ages you, but it does, in a way. It’s hard to explain. I kind of feel like time goes by so slowly, yet every day I age 5 years from things I have seen and heard. There are a lot of sad things, but there are a lot of miracles, too.

How have these miracles inspired your own personal growth? What is a hope that you have for yourself?

It keeps going back to finding the good in every day, and I don’t mean that like a cliché. They are my heroes and I look up to them. Most of them can’t vote, drink, or drive cars, but they know more about life than we ever will.

My hope is to get Smile Books Project bigger. Every time I meet a kid and they go to school and feel special because they get a book, I know there are hundreds behind them that need the same thing. To give them that is a huge goal for me. Something I would love to see in the future is 500 of me doing this for kids and going into hospitals, writing their stories, raising money, and giving back.

Does Smile Books Project have a reach beyond Cincinnati?

We have books all over the world. My first book, There's Something Different About My Hair, is in seven or eight different countries. Five or six years ago, there was a picture that went viral of three girls in the Jimmy Everest Center in beautiful dresses and pearls when they were going through chemo. I took the book and reached out to them and said, “Would you like me to sell this book and raise money for you?” They instead asked if people could purchase the book and donate the money back to the Jimmy Everest Center because they loved it so much and they wanted all the kids in the treatment center to have it. When we did that, it went all over. They got the book in Australia and China, and because of that, people would reach out and contact us.

I have teenage boys that are the hardest to reach and open up, and the second that they see themselves on their movie poster that we print out for them their faces light up.

I’ve done books for kids I’ve never met before, and my illustrator is amazing at creating pictures for kids as characters in their own book. I have teenage boys that are the hardest to reach and open up, and the second that they see themselves on their movie poster that we print out for them their faces light up. Kids are honest, so you always know where you stand. But with books, I’ve never had a kid not be excited and smile – even teenage boys that don’t smile for anyone.

What do you do for fun? How do you stay motivated?

I am a cheerleader, a dancer, and I like listening to music. I like telling silly jokes and I take my cues from the kids I work with. I will sit down and play a game. There is never a part of my day that I’m not sitting on the ground playing with somebody. I might be playing Battleship, matchbox cars, games that aren’t really my thing, but I never know what my day is going to be like, and that motivates me.

There’s also an element of knowing that today is not a good day for somebody, such as when there is a very real possibility that we may lose a child and knowing how to balance that and be supportive, caring, and calm to help somebody – you know, walk a family who’s losing their child out to their car and turn around and smile and do a puzzle for a little girl who’s coming back from the hospital. No day is the same. Every child is going through something different. Just trying to get a laugh out of somebody and knowing that I helped them in some way is a huge motivator to come back and do it again the next day.

What challenges do you face?

Every day is a challenge. It takes a lot of energy to be there for so many people. I’m always writing a book for a kid.

We write the books so that people at any age level can access them, where siblings and younger kids can read the story to discuss and understand it. It’s a challenge to do all of that, and it’s a really hard moment when I give the finished story to them because I’m nervous they’re not going to like it.

Describe an influential woman in your life.

I’ve written books for a few moms who have passed away: Emily was one, and my friend Kelly was another. They both knew what was happening to them and they had young kids and wanted their kids to know about them. I saw them know that their time was coming to an end and still try to be moms, work, and do what they needed to do while being very sick and going through treatments and major surgeries… I just think about that and all the moms here and I feel like every day, no matter what I am doing, I can definitely do it. I think about their lives and how lucky I am. I have two kids: a 12-year-old daughter and a 10-year-old son. I’ve been writing books and working with critically ill kids for 15 years and people say, “Oh, you are going to stop doing this when you have kids,” but I [want to] do it even more now because I see the increased importance.

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The Kids Are the Heroes: Sarah Curry Rathel and the Smile Books Project