In today’s episode, author Jillian Benfield, mother, and disability advocate, discusses her book The Gift of the Unexpected with host Heather. Jillian speaks about her son’s Down Syndrome diagnosis and how it shifted her life and allowed her to remove the masks she was wearing. She talks about how the unexpected made her a better, more open-minded person.

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BONUS: Charles Wait, Jr.

BONUS: Charles Wait, Jr.

Charlie Wait, Jr. was born with a rare heart condition and had emergency surgery as a baby. He is now the President of Adirondack Trust Company.

Transcript: *Disclaimer: This is an automated transcript. Please excuse spelling and grammar errors. 

jillian benfield 0:00
If we had to go into the doctor’s office to get the result, the final results, he explained to us, he said, It’s not good news. Your child has a 99.9% chance of having Down Syndrome and it’s normally at times like these people want to talk about their options

Heather Straughter 0:25
Welcome to a place of yes, a podcast about how I moved through my darkest hour. For me, that was in channeling my grief into good. Welcome to the show. But first, it’s time for our review of the week. This review came in from Apple podcast, I lost my youngest brother who was like my baby growing up and he was killed by a drunk driver two years ago, I am looking for a way to make it through my grief and your podcast spoke to me to listen. So thank you so much. Now I like that one. Because what I want to make sure is that this podcast is not just for the loss of a child, it is for grief in general. And it’s not even just grief in terms of when someone passes away. It’s the grief that we live in. In so many different ways. This person understood that and I am grateful for that. Welcome to a place of yes, I’m your host, Heather strutture. Welcome to the show. Today we are really thrilled to have Jillian Benfield with us. Jillian is the author of the gift of the unexpected. A former journalist Gillian is now a writer and fierce advocate for the full inclusion of people with disabilities. Jillian writes extensively about what happens when the unexpected moments change the course of our lives. Right on the cover of the book, it says discovering who you are meant to be when life goes off plan. That moment is huge. It’s huge. For me, it’s a huge theme of the show. I just think those before and after moments are pivotal. And I did and it took me many years to sort of lean into that and realize it. But one of the questions you asked in the book that resonates for me was was my life always supposed to be this way? And that struggle is trying to come to terms with that. So can you share a little bit about your unexpected moment? And kind of the answer to that question,

jillian benfield 2:13
my unexpected story. I’ll take you back to 2013. And I was wrapping up a news anchor and reporter job in Augusta, Georgia. And my husband graduated dental school, and he took an Air Force scholarship. And so the Air Force shipped us to Las Vegas, Nevada for a one year residency. And we thought that I had just had my first child and I thought I would take a year off of news. And when the year was up, I will go right back into news. Well, then 2014, May of 2014 rolled around and I got a phone call from my husband. And he told me that we were moving to Alamogordo, New Mexico. And I said Andy, where is that? And after a long day of filled with a lot of tears, I had this little whisper and this whisper was telling me to take a pregnancy test. And we were not in the business of trying. But this whisper wouldn’t go away. And an old pregnancy test had made the cross country trip with us somehow from our Augusta home and I took it and it was positive. And I slapped my forehead in shock and just did that scary laugh cry thing that you do when like nothing makes sense already. The whole thing? Yes. Yeah. And I thought, okay, okay, God, like this must be You must want me to be a stay at home mom. I get it. You know, I thought I had it all figured out three or four months later, we moved to Alamogordo. And eight days after we arrived, it was time for my 20 week ultrasound. And I noticed that the tech was taking a really long time. And finally she got her measurements flipped on the lights walked out. And a nurse walked in. And she said, Well, everything must look great because the doctor is not here. And as soon as she said those words he walked in. And he explained to us that there were several markers on the ultrasound that indicated that our unborn child had a higher chance of having a trisomy. And I said well what does that mean? It means that your child has a higher chance of having a condition like Down Syndrome and I just remember my back breaking out and fire and the words Oh no. Oh no. Oh, no, this doesn’t feel real. This doesn’t feel real. You know, we’re just kind of going through my head. I went home and kind of lived in a fog for

Heather Straughter 4:27
say it’s not real when sometimes you hear these things? Yeah, yeah,

jillian benfield 4:30
we we got some blood work done. And we lived in a fog for eight days. And then I got another phone call this time from my husband. And he said the doctor called it’s not good news, and I’m coming home and I just remember my 20 week 21 week pregnant body just falling to the kitchen floor. And my mom came and sat beside me she was staying with us at time and I just said this doesn’t feel real. This doesn’t feel real. And finally Andy walk into the door. And I noticed I felt like he was going to get sick. And so I followed him into the bathroom. And after he did get sick, he just laid his head on my chest. And I just remember as hot tears rolling down my shirt, we had just turned 27 years old. And we couldn’t believe something like this was happening to us. We knew that the test result was positive for something, something that was permanent, possibly deadly. But we didn’t know what. And we had to go into the doctor’s office to get the final results. He explained to us. He said, It’s not good news. Your child has a 99.9% chance of having Down syndrome. And it’s normally at times like these people want to talk about their options. I said, what options and he said option one is to terminate the pregnancy. Option two, as you continue your pregnancy at the high risk doctor, I said, Okay, can you tell us? Can you tell us more about Down syndrome? Like what, what does this mean for his life? And he seemed surprised by the question. And he said, Oh, well, at worst, we’ll never be able to feed himself and a best home off the floors of a fast food restaurant one day. But don’t worry, don’t worry, you don’t have to be a hero. You can have the baby here, and we can keep him comfortable. But we don’t have to do anything drastic to save his life. Oh, my goodness. So in other words, yes, our conscience is clean, we could have our baby, but we could let him die of natural causes. So the doctor led us to believe that our child would not have a life that was worth living. And so I really began to grieve as if a death had taken place. And that

Heather Straughter 6:37
was 10 years ago. I mean, that’s not like we’re not talking about. Yeah, I it’s just shocking to me. You wrote in your book, these questions that I actually I resonated so much with because in my, in my moment, similar to yours, I had, you know, you wrote, We give enough, we live decently enough, we’re kind enough. How did we end up here? To me that is, so I know that feeling right? Because we live in this world where it’s hard to grapple you think I’m a good person, I work hard, I do good things, nothing should happen to me. Not that that’s it’s a naive way of thinking, but it’s how most people think and certainly how I thought, and then you get this news, and you have to make these decisions. It

jillian benfield 7:15
took me a long time to really dig into why that was my reaction. And and to be fair, I realized that it was a really privileged reaction. You know, we live in Western society, we live in a society that is really characterized by the American dream. And the crux of the American Dream is if you work hard enough, you can be whatever you want to be, you can determine your own destiny. And then when something unexpected happens, that’s not of your own doing, you realize that that is only a half truth, even if even if it is even a half. And, you know, slowly, but surely, I was able to pull the threads apart on my attitude. And I realized that I had more in common with the doctor than I wanted to admit that the reason that my grief was so deep was yes, because it was in part because of what he said. But it was also because my beliefs reflected his beliefs in many ways. He didn’t think my child have a life worth living, because what he believed made a wife that was worth living was one that was characterized by the American dream, right? It’s what by American values that we would get have higher education and marriage and children and high income, right? That’s the American dream. And if I had a child outside of those bounds, well, then how was he going to live a successful life? And then if he couldn’t live a successful life, and then how was he going to have a life that was worth living? Because I had unknowingly equated those two things. One of the gifts of the unexpected is that it does kind of blow up your worldview. And it allows you to really examine what has shaped you. And, and then to take that part apart piece by piece, and put it back together again, and hopefully you come back with a better picture than what you started with. I have three kids. My oldest is girl violet. And then Anderson is in the middle and then I have a youngest son Preston. And you know, I think that we live life lot like other family of five lives. You know, we I have my author by day and then I am a transportation vehicle in the evening, from one activity to another, and the cooking dinners and doing all the things and you know, has has Anderson does his diagnosis affect my day to day yeah, in some way. as it does, I think that other parents of kids with disabilities will talk about high a state of hyper vigilance. And for sure, I understand that. Is it getting better as he gets older? Yes, for us, that’s true for some parents, who maybe you’re constantly administering meds and that sort of thing. Maybe it is not true. But yeah, we have, I have to make sure he’s not gonna bolt out the house. Or, you know, I realized I realized this recently, like, Man, I really avoid very common chores, because of the extra obstacles, because he’s a flight risk, you know, so does that affect how I live my day today? Yes. But is my quality of life? Very good and happy? And all of those things? Yes. Is Anderson’s like, very good and happy? Yes. I think my hardest thing with Anderson, is that it’s kind of that push and pull between pushing him to be his best and accepting his unique differences. That is a really hard line to walk. I think that it’s probably hard in all aspects of parenting, but having typically developing children and a child with a disability. It is harder with a disability than it is you’re typically developing children, but I do I want him to push him to be his best self, while embracing his unique differences and not trying to erase those not

Heather Straughter 11:35
trying to change who he is fundament. Yeah, right. Yes, yes,

jillian benfield 11:38
exactly. And that that is a something that I struggle with. And in regards to my other children, you know, has my daughter had to have more responsibilities as a child who has a younger brother with a disability? Yeah, I’m sure she has, I’m sure that I asked her to help me out in the, with the morning routine earlier, that I would have had her she didn’t have a younger brother with a disability. How will she feel about that? When she’s older? I don’t know. I do think that she’s learning a lesson a little bit at a younger age that we all eventually learn, which is life’s not all about us. She is the kindest, most empathetic kid. And I think that has a lot to do with her brother.

Heather Straughter 12:18
I think that’s a huge theme, you know, I have said it. And we’ve talked to other people on the show who have a child with a disability or with special needs. And we talked about the sibling and it’s very connected to me, because I think of, you know, my Ethan, and who knows what he would have been like, if he was not Jake’s Big Brother. It’s hard to know that, but I do know, and I like you just said, I think because of his little brother. He just has a compassionate and deep rooted kindness that I think is connected. They have perspective that it takes some people a long time, it took me a much longer time to get there. They just they got that perspective a little earlier. So my second son, Jake, when he was eight months old, had a life altering seizure came 100% out of out of nowhere. It was actually my older son’s second birthday party. We had a great day of family and friends. That night, he went to sleep, he woke up at four in the morning and his hand was twitching. To be honest, my husband was like, You’re overreacting, you know, he’s got a muscle spasm or twitch or something. But I had that mother’s instinct, right? Like that thing where I was like, No, something this is not just, this is something. So we like bundled up, went to the emergency room. Long story short, it was a seizure. They couldn’t stop it. We ended up getting med flight to Boston, which led to 117 day hospital stay, you know, like I had mentioned Ethan, my son was two years old. We had to make all of these wild choices pretty early on of like, okay, we’re going to be in Boston. My husband never left Jake side. I brought Ethan I had my parents bring Ethan to me. And we had a hotel room right next to the hospital. So my two year old that I lived in a hospital for those are in a hotel room. For those 117 days, it was just life altering life altering for Jake because he lost his milestones he was heavily medicated with a was an induced coma during the time, there’s a lot of things of just trying to figure it out. But life changing for us as a family also, it was just that moment where, you know, there was a before, which were I was a mom who had a great job at BU and had two healthy boys and life was good. And then it was different. You talk about a little bit like in these unexpected moments, finding the real me like when you kind of I think you wrote something to the effect of like hiding behind the mask and find living as your true self. I always found that like that’s my moment. Right? That’s when I started to figure out what was important and what was not important, like the American dream, right? Like you think you want to grow up and you want all of these markers and then the world changes. After those 117 days I came home with a disabled child, a pretty severely disabled child and a very medically complex child. He couldn’t hold his head He required 24/7 care, the disabilities are different. But the story is similar, right? Like how do we find out who we are alongside our disabled children? How do we take those lessons and help help society? How, like, how do we move forward?

jillian benfield 15:16
You know, I think there is this myth, especially where we live in the United States. And I think that our culture is toxically positive. And we think that the strong amongst us are the ones who, yeah, something happened. But then you remain the same. And you rush through that. It was Yes, it happened. It was hard. And now I’m over it, and life is good again. And we’re just supposed to have this positive attitude. And when really, I think the opposite is true. I think it’s the strong among us are the ones who are willing to resist society’s insistence that we overcome the unexpected and undergo it instead. And what I mean by that is, if you google image, the word overcome, you’re going to see people standing atop mountains with their arms stretched, and a victory stance. And that’s what we expect of people. And that’s what we sometimes expect of ourselves when going to the unexpected. If you google image search, the word undergo, what you’re going to find is somebody who’s about to undergo surgery. And that’s what I think we have to do. When the unexpected hits, we have to dig in deep into those dark places, we have to seek out help that admit that we need that help, and to confront all those pains along the way. And then when we’re sitting back up together, we then we have to, we have to live differently than once, then before, you know we have to pursue healing. And I don’t think that we get to healing, I don’t think that we get to transformation without the process of undergoing. And so what for me what that looks like for undergoing and I think this can look a little different for everyone. But for me, I dug deep into books, theology, philosophy, disability, related books. And little by little with reading with seeking good counsel with sitting in the darkness, my perspectives began to change. And I feel like you mentioned before those masks that I had lived my life and started to come off one by one. And I was able to discover the real me and the real me who was in the process of transforming.

Heather Straughter 17:45
I think you said something really important when you’re you said, well, two things like the sitting in the darkness, because I think you’re right, our society does not want people to sit in the darkness. Right? I think you use that toxic positivity so accurately, and I would see it with Jake, you know, everyone was just you kind of want to sugarcoat everything. And some things aren’t meant to be sugar coated some things I think you have to sit in it and you have to I always say like stew in it, you know, but you have to let the feelings be real. And I just love the way you talked about it. Because I it resonated for me because it was so real for me. And doing the hard work of digging deep and figuring out what you want to do. It becomes an I always feel weird when I say this, because it came at the cost of Jake’s health for sure. Like Jake had a very difficult for years, nothing gave me better joy than being Jake’s mom, I you know, I was a fierce advocate for him. For me sitting in that darkness helped me kind of come to this place where I really try to use the grief for good. And that has been a little bit of I don’t want to say a motto but like, you know, kind of words to live by, like how do I take the biggest part of my life which is funded by this grief? It’s the the grief of Jake getting sick, and then the grief of Jake passing away. And what can I do with that? Yeah,

jillian benfield 18:57
and I think before we get there, you have to do that work of sitting in the darkness though, right? Like it’s not like, and I think society to be like, Okay, well, what are you going to do with this now

Heather Straughter 19:07
wake up better, but you’re not like, yeah, I

jillian benfield 19:09
could have started a foundation as soon as he had the seizure. And maybe you did. I don’t know exactly what your timeline is. But you have to do the work of the internal work necessary before you can put that internal transformation to purpose. And I think what you said, my husband and I, we went away on a trip a couple of months ago. So this was 10 years ago and we got the diagnosis and other things happened. We my son with Down syndrome ended up having open heart surgery. I had a miscarriage and then our youngest son ended up having this really freak rare diagnosis in utero and ended up in a couple of surgeries and I lived in a Ronald McDonald House and other things right. And he asked me my husband asked me over dinner, would you change it if you could? And I said, you know, it’s a really hard question to answer because As Of course, I wouldn’t want my children to go through the pain. But what I changed something life altering for me. Personally, I really wouldn’t. I really wouldn’t if there was a way for me to get to this point of transformation, without my children going through it, of course, I would take that route. And of course, I would never wish that these bad things happen to them. But Richard Rohr father, Richard Rohr says, There are two great paths to transformation, and one is great love, and one is great suffering. I have just experienced that to be true. Do I wish it could have happened to a way where it didn’t affect my children’s shore course. But the fact of the matter is, is we are all going to experience suffering in this life, in one way, shape, or form, we all get the choice eventually of what we’re going to do with it when it comes. That’s

Heather Straughter 20:48
that moment. Right. That choice? And that’s such a big question, because my husband, I’ve had that conversation sometimes, too, you know, and, and people will often say, with the work that we do with the foundation, the name of it is Jake’s help from heaven. So we started it right after he passed, I always say it’s like, we started it because of the lessons we learned being his parents in a time where society, you know, wasn’t overly kind to him, or to us. It was just, you know, it’s hard. It was hard to advocate. And we felt we learned all these lessons. And we knew there were other families like ours that needed help, and what could we do? So we named a jigsaw from heaven after he passed. But we have people have said, like, oh, you know, you do such great work and his honor and all of these things. And there’s is that moment where I don’t always know how to answer the question of what do you change it? Because 100% Like you, I wish Jake had an easier life. I you know, you want your son not to have pain and suffering and all of those things. Do I love who I became because of the journey that we had? 100%? Would I trade it to? Would I be a less enlightened person to have Jake still alive and healthy and strong? Yes, but do I love where I am right now? Do I love my life, I really do. I love the way we work with people I love, I love these conversations, I love that we can be better than just the American dream.

jillian benfield 22:05
So my next book is going to be centered around the concept of the word and, and I think what we’re talking about here is really important for this, because a lot of your listeners are going to have experienced something that they probably wish would have happened differently, or wish they could take away. And yet they are seeing this amazing transformation and growth and probably new people in their life because of what happened and new opportunities and these positive things, right. I think it’s really important that we instead of saying I wish this hadn’t happened, but I’m so thankful for how it shaped me, we can say I wish this wouldn’t have happened. And I am grateful that because of what happened I am who I am today. And I don’t have to choose, it doesn’t have to be it’s not an either or right. And the truth of the matter is we don’t get a choice. We don’t get it as we know, it is what it is. But we can we can recognize the deep pain that we have experienced through the unexpected. And we can recognize the goodness that has come from it.

Heather Straughter 23:12
I actually love that I think that’s powerful. I say this to my 18 year old sometimes, you know, two things can coexist. Two things can be true at the same time, right? You know, so this could have happened, and this could happen. Both can be true. So let’s talk a little bit more about when we talk about taking the masks off to become our true selves. For me, I think unknowingly at the time, but I think my masks were very honestly superficial. Like I had a very particular thought of what my life would be like. And it would be following the path of having two healthy kids and they would be best friends. And we would travel together. I always used to say I used to have this picture before Jake had a seizure where I couldn’t wait for him to walk because I just could picture myself walking on the beach with one boy in each hand. And that was just I don’t even know where that vision came from. But it was so real to me. And I remember when when Jay got sick, and it became clear that he was not going to walk that picture in my head was almost one of the hardest things to reconcile. And then when I did reconcile it, it was it felt superficial because it felt it was real. But it also wasn’t it wasn’t that important. So for me some of those masks were really just caring less about what that picture looked like caring less about what that picture looked like to other people and caring more about the actual moments and the joy we found. What did your masks look like? Like what were they? Well, I

jillian benfield 24:35
think mine were more superficial than yours. No, I think in a similar way. I think the masks that I hid behind particularly were of performance. I mentioned before I was a news anchor and reporter and I had always had this experience in my life from being a singer too. So growing up I had a lot of attention from that and saying the national Like anthem for professional basketball game on a professional baseball team and things like that. And so I always had this like, small spotlight. That’s what gave me validation, I think that one of the masks I hid behind was just outperforming the person next to me, if I could just, you know, remain do things that were worthy of Me remaining in that spotlight. Well, then that was what made me worthy, you know, to have a child with a disability, that mask really came crumbling down, because people with disabilities are so discriminated against, right? I think a lot of us who don’t have disabilities, look at people with disabilities and feel pity or they feel sorry for them. Yeah. And I think that’s how I used to feel, before I had a child with a disability that shininess that performance piece, that carrying of what my life looks like to others, was really what I hid behind. And really, the biggest piece of me, that had to fall apart when the unexpected hit. So that

Heather Straughter 26:06
actually leads me into something else I wanted to talk about with you, you know, you talked about, and you just touched on that when you have a child with disabilities, other people and even us beforehand, like you know, this kind of life before you treat it with pity or you feel sorry for them, or you think it’s a lesser life, when it’s your kid, you don’t feel that way, and you just see it so much clearer. One of my thoughts with our whole my whole like living, you know, turning grief into good is really an advocacy too. And, you know, when I was Jake’s mom, and you as Anderson’s mom, right? You You have to be their biggest advocate, I feel a responsibility to change the way people see that and change their thoughts of pity. And that kind of thing. You talked in the book about, you know, kind of the long history of how people handle people with disabilities and institutions. And the modern day story of Ethan Saylor, which, until I was listening to your book, I did not know I can say I heard it this morning. And it brought me to my knees, you know, those kinds of things exist. But those stories are just heartbreaking. If it’s okay, I’d like to touch on that a little bit. And I should at this point, probably say for those who are listening that this this topic matter could get a little sensitive trigger warning. I guess I

jillian benfield 27:21
don’t want to misquote the facts, but I will. So I will say that this is a generalization. Yes. Yeah. So why I wrote in the book about Ethan sailor, it is in a chapter called a broaden perspective. And I had avoided the Ethan sailor story for years, I saw it come across my feed, when my son Anderson was a baby, and I just and I would see it every couple of years, and I would just push it, you know, to the side, well, then 2020 happened. And for some reason, I finally got the courage to to read it. And essentially, Ethan went to a movie theater with his professional helper, he watched a movie, and then he wanted to stay for longer. He wanted to stay for another movie without paying. And so security was brought in. And I don’t know the details of what exactly happened. But it got out of hand clearly. And the officer ended up strangling Ethan to death. Ethan’s last words, were mommy at hertz. And at the time, the George Floyd story was in the news. And his last words of mama I’m through, I think, I think not just came blaring in my ears. And the reason that I share that story, or shared the story, the way that I did is because it helped me to realize the blind spots that I had, when it came to other marginalized groups. You know, I was starting to learn about the disability community and going to all the advocacy courses that I could to be a good advocate for my son to use my online platforms for advocacy purposes. You know, it made me realize how much work I had to do with other marginalized groups as well and hearing and believing their stories. And yeah, the reason that I included it is because I think the unexpected can help us broaden our perspectives. It can help us to be more believing of other people’s hardships, it can help us become more empathetic and it can help us become better allies.

Heather Straughter 29:36
Well, I think that that last piece to like the being coming an ally or becoming an advocate, right so i Something about that story. I mean, everything about that story just resonated and also just so infuriating, right? When when we live in this world where people see our children as less than in it and to be honest, I see with both of my children because my you know, my son Jake had significant disabilities, but my husband is black. So my son On Ethan is an 18 year old man, he’s biracial. All of those stories are just you know, when people see those that we love in such a different way. And you talked a little bit, and I hope I’m saying this correctly, because I made notes, but you talked about how it changes you right? And we have a newness to us. And some people in our lives don’t like the newness. They see us in the same skin, even though we’re so changed. Like I said earlier, so much of your your words have I relate to none more than those though, sometimes things happen that changes so deeply, that we can’t be anywhere near the same person. We were even though we look the same. You know, even though I think I’ve I’ve changed and done all these things, hearing that Ethan sailor story from from whenever that happened, and being so connected to the you know, George Floyd and the countless names, the many, many names, I feel this like power. And you talked about it a little bit about how we can use some of that power, finding candidates, you know, what, as we vote, as we have an election coming up this year, who are we voting for? are we voting for the people that are best for you? And I or are they voting for the people that are best for Anderson, and those like Anderson and Jake, and I just think it’s so important. You

jillian benfield 31:20
know, I think I had somebody leave a negative comment. Once, when I think I posted a very shorter, much shorter version of that story on the internet, like, Well, you shouldn’t have needed a son with a disability to realize that and they’re right. I mean, no, I shouldn’t I shouldn’t have needed that. Right. I wish I wish we all were more evolved. Yeah. Right. But nevertheless, it did change me. And that is one of the good things that can come out of the unexpected,

Heather Straughter 31:51
and using the change to help things move forward for other people, right, whether we should have been enlightened earlier than we were. The fact is that now we can make that change, we can help others through the process. So the title of my podcast is called the place of Yes. And I feel like this, you know, this last part of the conversation is a little bit about what I mean, from a place of Yes, right, you have to take these things that happen to you, then you have to figure out how you want to live your life, right. And for me, it was in this place of Yes. And that doesn’t mean that every day is, you know, sunshine and rainbows. But it means that you try to lean into the good. I’m just so thankful for you for sharing your story. Because I think that it’s just important, I

jillian benfield 32:34
hope that people can take away from my story, because I think I think my story is relatable. And yours is too. And maybe maybe people can think, well, I could never relate to my child dying, I could never relate to having a child with a disability. But really, the unexpected comes for all of us in one way, shape or form. Our circumstances are not always good. But we can move forward, we can ask God if we believe in God, we can ask the people around us of how can we make good come from this? I think that we we have that power. But it has to be a journey that starts from within?

Heather Straughter 33:14
It’s funny, like I call it the place of Yes, but I think I think we say very similar things. You know, to me, it’s like how can you come from a place of Yes. How can you turn these the unexpected into a positive view,

jillian benfield 33:27
you talked about a different life. And one of the main messages that I have learned through the unexpected and through having a child with Down syndrome is that a different life does not equal a less than life. And I think, you know, one of the masks we back to the mask thing that I wore was I was just trying to have a life that like everyone else’s. But you know, like on the upper echelon of that right, like, but it was really in the in the vein of sameness. And I think the unexpected taught me that a different life does not mean less than life. And actually a lot of gifts can come from a life that looks quite different from those around you.

Heather Straughter 34:13
So absolutely. We have a segment that we call ask Heather, anything. If you would like to ask me anything, please go. Go ahead.

jillian benfield 34:24
What’s the most rewarding thing you’ve done through the foundation? Oh,

Heather Straughter 34:29
that’s a good one. I can answer that from a couple of perspectives. One is some of the relationships that we have built because we started in 2011. Since then, we have awarded over $1.6 million in grants to local families. So that piece to me like blows my mind because when I tell you when my husband and I started this foundation, we didn’t come from a nonprofit background. We didn’t come from anything that would make me think that we knew what we were doing. Nothing but the love of the work in the family. is and this real devotion to keeping Jake’s memory alive is kind of what drove that, that I’m super proud of. I just feel really good about that impact. But the other piece is that we have been working with since the very beginning, we recorded a episode earlier with a mom of a little girl that came in in 2013. We’ve been helping, so we’ve been helping her from the age of five to 15. And the mom literally burst out in tears saying, I don’t know what we would do without Jake’s help from heaven, because you have never said no to us. And our life is better because of it.

jillian benfield 35:34
I know I want to pivot into nonprofit eventually. But what holds me up is I don’t want to fundraise. I hate asking people for money. It’s

Heather Straughter 35:44
you know, it’s it is by far the hardest part. The one thing I say that worked for us, and it’s very different than what people did. Because I was like, I’m not doing like a road race. I’m not doing a golf event. I’m not having a black tie Gala. Like these are things I’m not interested in. When Jake was alive, we would go to the bowling alley, and he would be in his chair. And he obviously did not bowl or whatever. But he liked the lights and the noise and he would sit there and Ethan would bowl and we would bowl. And that for the first 13 years, we had a Family Fun Day we called it and we had one event and we solicited only one time a year because I didn’t want to be constantly asking for money. And that was our primary source. And we people got to know that we were going to ask you once a year you were going to sponsor our event, our families would come together our sponsors and we just had this one Sunday 11 to one event once a year, the last one we held we raised $200,000 It’s absurd. You know, it kind of with everything else, what do you do you dig deep, you work hard, you know, you try to figure out how to do it. And I will say the authenticity of what we do helps local businesses and people we ask for to support us.

jillian benfield 36:57
Well, thank you guys for having me.

Heather Straughter 36:59
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