The Voices for Voices Podcast Episode 19 with Guest, Dr. Jessica Hoefler, Founder and Executive Director of Piper’s Key

Justin Alan Hayes (00:00):

Hi, everyone. Welcome to the podcast. This is the House of You podcast, sponsored by Voices for Voices. I am your host, Justin Alan Hayes, and today our guest is Dr. Jessica Hoefler. She is the founder and executive director of Piper's Key. Thanks for joining us today.

Jessica Hoefler (00:23):

Of course. Thank you so much for having me, Justin.

Justin Alan Hayes (00:25):

Absolutely. Thanks for bearing with the technical aspects of getting everything.

Jessica Hoefler (00:29):

Of course, of course.

Justin Alan Hayes (00:31):

So, yeah, really excited to have you on the podcast. Also for the live stream for those that are going to check that out and really want to share, again, the Voices for Voices theme of sharing the voices for those that maybe can share their voice, maybe can't, maybe aren't able to. In your organization through another organization I'm in, we crossed paths and I just ... first of all, it's emotional to learn about the organization, but what you're doing is fantastic. I really want ... if we could just start off by how Piper's Key started and we can go from there and share with our audience.

Jessica Hoefler (01:26):

Absolutely. So as you said, Piper's Key came from a hardship that I went through and actually was giving a voice to my daughter, Piper, who no longer has a voice and wasn't going to have a voice. So my journey began April 23rd, 2020, right in the midst of the pandemic. So it was a very challenging emotional time already. I went into labor with my second daughter, it was a healthy pregnancy. She did slow down in utero, moving, but I still got some movement and I was tiny so I didn't think too much of it. Heart, everything was going well. But when I delivered her, it was fast and she came out unable to breathe, move, really any function, but she was alert. But they immediately had to intubate her and noticed immediately all of her issues neurologically.

So she was rushed to Akron Children's. I was left behind at Summa in Akron, but my husband was able to join her and Akron Children's, I can't speak enough, they're now my second family. An amazing, amazing hospital system for children and she was put in the critical care NICU. At that time, they discovered she ... well, it took a little bit of time to discover it, but I think more of the doctors knew what it was when they saw her, and of course our denial in that there could ever be anything wrong with her was there, but she was diagnosed with one of the rarest forms of spinal muscular atrophy. It's spinal muscular atrophy type zero, which is a muscular disorder for children where essentially their muscles don't develop. They eventually weaken, they cannot move, swallow, breathe. Her disorder was the worst and the most severe in the sense that it happened in utero.

The other types, there are some amazing cures and medication for, but you cannot lose the function before it's there. So unfortunately Piper did not have much hope as far as a quality of life and it took a while to get to that journey, but we decided that we were going to unlock her from that pain and give her the opportunity to fly. So on May 20th, 2020, we removed her from the ventilator, but we were able to do that outside Akron Children's in their beautiful garden area. They orchestrated it in front of a beautiful hydrangea bush and there was a little bit of sprinkling so it was cool because she got to experience all the weather patterns. Right when we removed her tube, the sun came out and she passed within five minutes at 4:32 PM. So we knew we made the right choice with her being so fragile, but I felt there was this weird part of me that felt robbed from the disability community because it's such an incredible community.

I'm an educational audiologist professionally and I knew I wanted to do something that would allow me to still be her mother, still be a way to honor her in a positive way. I mean, not that grief support isn't positive, it's so needed, I was living it on a day to day basis and still am, but I have a now five year old and I wanted something for her to hold onto that made her feel proud and happy. So Piper's Key, we gift inclusive books to children with disabilities that represent themselves in a positive light. So I just feel that a book is the first media device a child gets. It's the first thing they hold. It's the first thing that teaches them communication in the world, and so why not give them a book that they can actually see themselves in, a character that looks like them and is represented in a positive way? So yeah, that's Piper's Key.

Justin Alan Hayes (05:40):

So how did you decide that an organization, a 501(c)(3) nonprofit was the route you wanted to go with Piper's Key.

Jessica Hoefler (05:49):

So I always wanted to give back and that being said, I really knew going down a 501(c)(3) path was going to be hard and a really big challenge. Another divine intervention story, because everything lined up great with Piper and what we felt was her mission and this is hers, one of the things we use is she was unlocked from pain but freed by love. So that's where the key comes in. But when I looked into the 501(c)(3) process, it was right during that pandemic and well, we're still in it, but in 2021 and I was told it was going to take over a year and the IRS did have a disclaimer that any of those applications were going to take a really long time. Well, the day I got my 501 status and, again, felt like I was actually an organization ready to take charge and really start this mission, I found out I was pregnant with my now rainbow baby Leo. So Piper gave us a little sign because that was also something we were not trying to do, but she really wanted to let that be.

Justin Alan Hayes (07:02):

That's incredible and I think what some people and kind of want to say my prior self, I did want to believe that things line up for a reason and when you're bought in of taking things out of your hands and whatever that higher ... whether somebody's religious, there's some things that just take aligning to happen, good, bad, indifferent. That's something that I 100% agree with and I just find it so interesting the more people I talk to and now most recently you that how things line up and how specific they are, whether it's to the day, whether it's to the weather outside or being on a trip or how things just really come together. It was almost like in your mind, you wanted to do something and you had your ideas and maybe not quite sure exactly the vehicle and then as things happen, it just comes more clear.

 So it's like, "Okay, I'll know it when I know it, so when I get to that point ..." and so having these divine interventions or these paths crossing and these events, it's really just incredible. Can you speak just a little bit to that?

Jessica Hoefler (08:29):

Yeah. Honestly I've always said that Piper was giving me signs. She gave us signs the minute she was born with everything knowing that we were going to go through this and she had a purpose. One of the things that I always say is regardless of how long that life is, if you were still born or a miscarriage and unable to be in that world, that baby still had a purpose. Any life, no matter the time. In hers, she just needed 27 days. With a lot of those dates, we found so much of even just coming to the decision that we were going to take her off life support was so much of that divine intervention. Obviously we yo-yo'd back and forth with that hope and not wanting to do that, and one of the things that my husband continued to say is, "I don't want to make this decision for Piper. I want her to make this decision on what's best for her."

 One thing that she showed us in the hospital that gave us that ability to know she needed to be set free was one night I actually hadn't left the hospital, gosh, in like six days and I finally went home and he took over and was laying with her at night. I was at home, finally relaxing with my mom and my best friend and we were just for the first time laughing about something and I get a call from Ryan and her tube had slipped, even just a tiny millimeter. She had to be excavated and they immediately were like, "What do you want to do? Do you want to keep her off life support now? Or do you want to reintegrate her and go from there?"

 She was re-intubated because they didn't want her end of life to be that way, but in that moment we realized how fragile her life would be, that she did not deserve that, that she deserved to fly and have that quality of life. I think now she's taught me and made me a better person and be able to now give this opportunity to help other children and parents really understand just how to live and enjoy life, even if it's just through a little book, and I think that's just going to make a difference in that.

Justin Alan Hayes (10:51):

What's one thing or a couple things maybe you've learned, I guess, throughout the process of once you attain that 501(c)(3) status, reaching out to the community, how those connections, where, let's say, you still get that validation like, "Yep. We're doing the right thing." Because there's so many times where things are good, then there might be times where like, "Okay, there's not an event or there's not a way for me to give." Because that's something I deal with. How do you manage that and work through that?

Jessica Hoefler (11:25):

I think what I've noticed with Piper's Key is how much it's evolving and I've just let it go the route it needed to go. Yes, we're surrounded by literacy and social media and everything is a huge aspect to help. I've done little projects along the way that are a little different, just guiding it where it needs to go, which has allowed, I think, the mission to be spread. I think what's been the hardest for a lot of people to understand that these books are free. It's nothing that they have to pay for. So that word has just been the biggest thing, just pushing that out. Honestly, I'm still learning. I am not a business person. My husband is, I am not.

 I prefer to be told what to do. Not a lot of people like that. But I have an amazing board backing me and I have my family that's backing me and we are just making sure that you keep promoting it. But I will say we have busier times than others and being that I work full time, I would say the summer is definitely easier for me to promote that. When we first launched, obviously getting donations for the books was easy. People were willing and quick, but now we do work a little bit harder at that, but trying to set up events and activities along the way and hoping to organize more fundraisers as we go.

Justin Alan Hayes (13:02):

Perfect. So how can people get involved with Piper's Key? Learn more about what you do, the current events of things that have happened and those exciting things?

Jessica Hoefler (13:16):

Absolutely. So we are on Facebook and Instagram and also you can visit www.piperskey.com. On there, you can contact us and reach out either if you're an author, because I love taking ... especially local authors, parents that have maybe written a book about their child, anything unique and all our disabilities, we range from mild to maybe not even someone working on a speech impediment that isn't necessarily permanent all the way up to a multi disability. So anything we would love to have them included in our library. Then you can also reach out if you're a parent, grandparent, provider and request a book and I will just mail it directly or they are also provided at the hospital. So at Akron Children's, we're pretty actively involved and have a lot of our books in a lot of their clinics. Then we're hoping to get into Rainbow Babies and Cleveland Clinics soon. So,

Justin Alan Hayes (14:18):

So those connections ... so I'm fascinated. So I am a business person and I'm still learning. Obviously you have that connection with the Akron Children's, given the experience. So how do those introductions for you go when you reach out? Is it somebody you know and they're like, "Yep, I'm the right person, or let me connect you." For those organizations out there that might be looking to get more involved and want to reach out.

Jessica Hoefler (14:43):

Yeah. So I personally find, especially those big hospital systems, starting from the top is not the way to go. You won't get an answer, even if you were a patient or your daughter was a patient. So I really just used the connections that I had and started there and worked from the bottom up. From there, because especially our children's hospital system, it is a network. We're very fortunate in Northeast Ohio to have such a wonderful children's hospital network. So from there, those professionals have reached out to other professionals at different facilities and they're hearing, "Oh, these books," and they're being passed out at all these offices just to kids that are coming in for appointments.

 So I think that the networking is really important to get your name out there, but most importantly who you know is going to be even bigger. So maybe someone that's simple, you never know their connection that they're going to have with that. You don't have to always just go to the top.

Justin Alan Hayes (15:58):

I guess a question I should ask at the beginning, how did you come up with the logo for Piper's Key and the color scheme?

Jessica Hoefler (16:09):

So pink was her color. Purple was ... though my five year old would arguing now pink is now her color again, but at the time purple was. So pink was Piper's color and I said, "You know what? It can be pink." I'm like, "Everybody wears pink now, right?

Justin Alan Hayes (16:24):

That's right.

Jessica Hoefler (16:26):

The book and being literacy and the butterfly just signifying that angel on earth aspect without being too literal. So yeah, I found it and played around with it and changed my logo around and it's become our little logo.

Justin Alan Hayes (16:49):

Awesome. So we'll come back with Dr. Jessica Hoefler here in a minute. Just want to let you know about our upcoming Voices for Voices, A Brand New Day event, which is our annual gala event. It's on October 12th at 7:30. For those that are in the Northeast Ohio area, it's going to be held at the Canton Cultural Center and tickets are $20 and all the proceeds go towards the Voices for Voices organization, which is also a 501(c)(3). Dr. Jessica Hoefler is going to be one of the ... I call it the blockbuster speakers, but one of the three individuals that's really going to talk a lot about what she's talked about here with us today and really just that thought of A Brand New Day, kind of like with Piper's Key, of unlocking and setting her free, that's with Voices for Voices and with the brand new day event specifically.

You'll want to share experiences of real everyday people, not celebrities, just people that are going through and have gone through some traumatic things, whether that is mental health related, whether that is anything really traumatic. So it doesn't have to be mental health related. That's how I started the organization, but obviously as I'm learning and want to have a broader reach, that individuals with mental health challenges aren't the only individuals that have gone through traumatic experiences. So again, Dr. Jessica Hoefler will be one of the blockbuster speakers. We're also going to have Brian Laughlin, who is a lieutenant at the Twinsburg Fire Department. Then one of my actual former students, James Warnken, he is an online specialist with expertise and search engine optimization and data analytics and he's actually legally color blind. So he goes through certain software packages to be able to do the work for his businesses now. Even when he was my student at Walsh University, there were some I guess, accommodations, accessibility, things that he was able to do.

 So really not only from a spectrum of age range, but from first responder to somebody in education, traumatic, male, female, that we are all going through and have gone through things and I really want with A Brand New Day is to talk about not just some of the tough times, but how the message of a particular mission and vision is living on and how it's touching and reaching and helping more people. So again, you can find out more about A Brand New Day at voicesforvoices.org, or you can go to Eventbrite, which is the official event platform to put events together, and you can search A Brand New Day and then you'll find the event tickets there. Then you can join us in person. We'd really love to have you and bring a friend, a family member, somebody that would like to be uplifted.

So it’s not just the speakers, we're also going to have a special needs band, RockAbility, going to be playing. So some real rock music. So some of these individuals are going to be playing real live instruments with some mentor musicians and everything from the music. It's all going to be played live, in person. We're not going to use auto tune like some of the music today, and even the singers, the vocals, are going to be done. So it's going to be a lot of fun. We hope you'll make plans to join us and you'll see more on this coming up on our social media pages, the Voices for Voices on Instagram, Facebook, Twitter, LinkedIn, wherever you consume content, as well as future podcasts.

So coming back to our conversation with Dr. Jessica Hoefler, I am curious and I think for our viewers and our listeners, what's next for Piper's Key? You talked about having some different projects that are still in that realm that come up and you tackle and you go through. I'm just wondering just as an organization, as it continues to evolve, what other exciting things or what can people continue to expect from you?

Jessica Hoefler (22:40):

Yeah. So one of the things that we're really into right now are setting up those free little libraries around communities and having those become more inclusive. So we helped establish one at Rushwood Elementary in Nordonia Hills. So that ribbon cutting ceremony was done in mid May and it was beautiful because Sarah, the intervention specialist there, and Gina, the school psychologist, just ran this and made sure that the kids were all involved. So the special ed kids were the ones decorating it, decorating the box, and then the whole building, all the kids painted rocks to go around it. So it was really cute. We also did a little library where a Piper is buried at Silver Spring Cemetery, and that one's more grief focused. It's called Quinn and Leo's Library of Hope, after her siblings. So those are all grief focused books for all ages.

              So again, I let it steer where it needed to be. So that little library is available to anyone that's grieving and needs that opportunity to feel, again, that hope in the dark times. Then my goal is to start to do it also around the community. So we're in Hudson. So the next route would be in the elementary schools there and so I have that conversation started and we're working in that realm. Otherwise, I'm really just striving to continue to get in as many hospital systems as possible. So we were a nationwide in Columbus, and then now we were just contacted by a genetic counselor in Dayton. So I'm hoping to get some more books there too as they come. So it's been really ... I'm just letting it take off where it needs to go and as I've kind of ... I realize it's going to grow as Piper grows too. So I don't want to ever exclude that adult market too. So that conversation's always been open too with different foundations.

Justin Alan Hayes (24:45):

Wow. Yeah. Does it surprise you? I know that Piper's has and always will guide the organization. Looking back as we sit here today of, okay, when you're thinking about the organization and wanting to do something and seeing just how that evolution has been, is it surprising, what you thought?

Jessica Hoefler (25:09):

It's definitely taken off more than I anticipated, and there are times I'm even like, "Woo, I have to punch the breaks," because I'm a full-time mom, I work full-time in the schools as an audiologist. So I have to realize my capacity, but if Piper was here, I would be busy with a third child. So it's something that I didn't see evolving where it needs to, but what's incredible to see is the need. It just made me realize how much our world really isn't inclusive in that disability community, and particularly how scary it can be as a parent to navigate and that sometimes those books are more beneficial for those family members than they even are for the child themselves who doesn't see themselves as different yet, but the parents immediately put that on them and are like, "Wow, what am I going to do with this child who's clearly ..." They're grieving the loss of a child they thought they were going to have.

              So when they read these books that are written by other parents and they see these other kids thriving or hear these stories about them thriving, no difference than anybody else, just with different tools and using their disability to just be an amazing person, it really is powerful. But I've noticed how much that's needed in the world right now.

Justin Alan Hayes (26:28):

Oh, it sure is and I'm all about feel good stories any time, but definitely now to hear stories about helping others, whether how small or how big and the different ways and the avenues and how one door can open up another. I was glad that I was able to cross path with you, with Piper and her organization and you to be able to share her story and to continue to help others that I'm sure she would want you to continue the different ways as they evolve, as different experiences come up. Like, "Hey, yeah, we can do that." So I want to just thank you for joining us.

Jessica Hoefler (27:21):

Absolutely. Thank you.

Justin Alan Hayes (27:24):

Looking forward definitely to October-

Jessica Hoefler (27:28):

Me too.

Justin Alan Hayes (27:28):

To just have you just get in front of more audience members, more hopefully donors, more people that want to get involved with Piper's Key and learn about something that maybe they were closed off to. Maybe they just didn't take the time to look into those things, for whatever the reasons, whether it was intentional or unintentionally. I think that's going to be big. So again, before we go, is there anything that we didn't cover that you want to just make sure from a promo standpoint that gets included?

Jessica Hoefler (28:10):

I think it's just letting you know that there are multiple ways to be involved and our books are 100% driven and purchased through donations. So if you do want to contribute to Piper's Key in even the smallest way, we're on Amazon Smile, so you can select us as your nonprofit and proceeds will go there. It's like 0.05%, but nonetheless, it adds up and I'm very surprised. You could do Facebook charities, those donations that they collect. You can also donate on our website or just look for Piper's Key and request a book and send it to someone you know. We all know someone going through something, and we all know someone with a child with a disability, whatever that may be. So send them a book and brighten their day. That's what I'm here for. So again, it's piperskey.com.

Justin Alan Hayes (29:04):

Thank you so much.

Jessica Hoefler (29:05):

Thank you.

Justin Alan Hayes (29:07):

This has been the House of You podcast, sponsored by Voices for Voices. I'm your host, Justin Alan Hayes. Thank you for joining us both on the audio podcast, which will be forthcoming, and those who are joined on the live stream. We're excited, glad you joined us, hope you continue to join us and continue to learn more about Piper's Key and help out where you're able to.

Please donate to Voices for Voices, a 501c3 nonprofit charity today at: https://www.voicesforvoices.org/shop/p/donate

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