Writer Jessica Burdg asked sixteen families what it was like to raise differently-abled children and she’s collected these sixteen unique poignant profiles in her new book, More Than a Diagnosis: Stories of Hurdles, Hope, and Possibility from Parents of Children Who Are Differently-Abled
The children of these families have conditions ranging from autism to ADHD, and rare genetic conditions to traumatic brain injuries and even cerebral palsy. Each story illuminates the raw pain and the powerful hope these families have found in their lives. In this interview, we talk about the experiences that drew Jessica to this work and we pull out some of the beautiful lessons these parents and their children have to teach us.
Emily Gindlesparger: Today, I’m here with Jessica Burdg, welcome to Author Hour, Jessica.
Jessica Burdg: Thank you for having me.
Emily Gindlesparger: I am beyond excited to talk about your book, not only because I know you personally, and I’m so thrilled about this feat that you’ve accomplished but also, because the mission behind this book is so incredible and beautiful. I wonder if you want to start off just describing for listeners what the book is and what it’s for?
Jessica Burdg: Sure. The book is a collection of profiles of families with children who are, what we call differently-abled. I’ve interviewed all of these families. The kiddos have a variety of different diagnoses, from autism, to spina bifida, to epilepsy. There are lots of different challenges that these kids have and their families have dealt with, but the common theme is really one of resilience and hope. It’s a collection of these profiles, all of which originated on a blog series that I did for The Brain Possible called ‘Stories of Hope’. So, the book came together as a compilation of those existing blog stories, and then I did several more to round out the manuscript.
The Brain Possible
Emily Gindlesparger: Let’s talk about The Brain Possible for a moment. Give us an intro to what that organization is?
Jessica Burdg: The Brain Possible is an offshoot of the Who is Carter Foundation. Both organizations support kids and their families–kids who have brain injuries or who are differently-abled. We say differently-abled, instead of special needs. The Brain Possible piece is sort of the resource arm of Who is Carter. I think Emily Abbott, the founder, way back when we were conceptualizing this because I worked with the founders for quite a while, she wanted it to be like Angie’s List/Wikipedia, so to speak. A place where parents who had questions specific to whatever their child was facing could come and find community, could find blog articles, could find stories of hope, could find practitioner information, what toys would be best. There’s a lot of information about holistic medicine and a lot of different kinds of treatments. The Brain Possible is a coming together of resources that we lay out for parents. I am proud to be the editorial chair of that foundation.
Emily Gindlesparger: That’s so awesome, especially because as I was reading through your book and coming across these astoundingly gorgeous stories of resilience from all of these various families dealing with a whole range of particular challenges and celebrations, one of the most common threads that I saw each of the parents speaking to was, that they didn’t necessarily articulate how alone they felt in having a differently-abled child. But they all said the power of connecting with someone who had a similar situation and could actually really identify with what they were going through.
Jessica Burdg: Yeah, that’s intentional. When I approached this project, even when it was just a little baby blog series, I paid very close attention to making sure that I asked the parents not only what they wanted the world to know about their child but also, what’s it like to be a special needs parent? What it’s like to be a parent of a differently-abled child? How does self-care look for you? What’s been the most challenging thing for you, personally? I really wanted this to be about the kids and their families.
I think that’s one thing that makes these stories a little bit different than what’s available resource-wise. We’re not saying, “Ignore the hard stuff and only focus on the beautiful things.” We’re not saying, “Here’s a list of all the challenges.” These stories are in the middle. These stories are real life and I really focused on showing the whole journey or as much of it as parents were willing to share, which was usually quite a bit.
The goal is that if, say, a parent has a child who has a diagnosis of epilepsy or autism, when they come and read Gabe’s story or Piper’s story, they’re going to see an authentic journey reflected, not one that’s too far on the challenges or too far on only the good stuff. That’s really what we wanted was to reflect what life is really like for the kiddos and the people who care for them.
Emily Gindlesparger: One of my very favorite moments from the stories was in Piper’s story, actually where the parents talk about basically an emergency evacuation off an island, and as their plane is taking off in the dark, they realized that all the lights on the runway just looked kind of funny. They’re a little bit disordered and then you found out later that the hotel where the plane had taken off had actually called all these people on the island to come in and shine their headlights so that the plane had enough light to take off. I just thought that was such a beautiful illustration of people really coming together and demonstrating care and support for one another.
Jessica Burdg: Another thing that stood out to me about Piper’s story, besides that beautiful runway piece, as she mentions that Piper got a drug called Epidiolex, I’m probably not saying that correctly, but it was a new drug that they were testing. When she said that, it stuck out in my mind because before I came to work at Scribe, I freelanced. I wrote monthly features for this magazine called Laboratory Equipment Magazine and I had actually done the profile on the pharmaceutical company releasing that particular drug because it was considered an orphan drug or orphan medication, which means that it’s given special attention and pushed through because it treats very specific conditions for which there aren’t other treatments.
When she said that, it was kind of like a full circle thing, I remember writing about that and talking to the pharmacist and the scientist and then here I am now just randomly talking to a mom whose daughter used it. I had no idea. That was pretty crazy.
Emily Gindlesparger: Yeah, that’s incredible. I didn’t realize that. Sounds like you have been in this community, in this work for a long time.
Jessica Burdg: Well, the orphan drug article was just, you know, how it goes. When you’re a freelancer, they tell you to do it and you do it. I certainly had a lot of interesting assignments there. I’ve always enjoyed working with kids and I worked with Matt Abbott on his book Who is Carter, which was the book that launched the Who is Carter Foundation, so I became very good friends with the Abbotts quite quickly. The story was about their son Carter, who passed away from complications from a brain injury.
In working on that book, I interviewed not just Matt, but Emily and Emily’s parents and it was quite an indoctrination, I guess. I started volunteering for Who is Carter directly after. I helped build the content for the website, all that sort of thing. When Emily was launching The Brain Possible, I came on board there too and started the ‘Stories of Hope’ series.
I’ve always had definitely a heart for it, for helping people who maybe sometimes feel or can be perceived as on the edges of things. On the edges of what’s “normal” or “accepted” or “perfect”. That’s always been my thing and when I got to work with the Abbotts, this was such a natural thing for me.
I have made such good friends with these families, these moms, these dads, it’s really been a huge gift to me to work on this project and work with the foundation because I have learned a lot about what matters. What’s important. I’ve learned a lot about grace and gentleness and this is going to sound cliché, but I really mean it. It’s given me a lot more than I’ve given in terms of my volunteer work with both these foundations.
Emily Gindlesparger: That’s amazing. I was really struck that I read this a couple of times, parents saying that it really is almost hurtful and heartbreaking when neurotypical families, neurotypical people look at my children and look at how I parent and then say, “I’m sorry and I couldn’t do that.” It really opened my eyes to how many misconceptions, so many of us have about what it even means to really live a full life with children who are differently-abled.
I’m curious about what lessons you may have learned in the course of these interviews with families?
Jessica Burdg: Okay, one thing in particular. You mentioned the “I’m sorry..” thing and that was an interesting conversation for me to have with Sammy’s parents. I also learned a lot about some things that we say when we think we’re being helpful or we think we’re being politically correct or we’re just trying to have a conversation. Such as when people say, “I understand.” If a parent of a kiddo who is differently-abled, would tell me about this challenge that they had, in the first couple of interviews, I would say, “I understand.” Not coming from a way of trying to take away for many things that they’re going through but more of a soothing thing.
As I continue to do this, I started to check my words a little bit, and I started to realize what I didn’t understand. I did not understand. I will never understand.
Even having spoken to all these families, I continue to talk with them, and other families. I will never understand, but I am becoming a better listener. My eyes are open wider, and I think they were already pretty open. I think we can always do better, be a little bit gentler with the world, and I am really big on gentleness.
This project reaffirmed that, for me, that if we just move through the world a little more softly, a little more patiently, and with our eyes open and our hearts open to what we don’t understand, and not letting that be a disqualifier for meeting someone or engaging with someone–it should be an invitation, not a disqualifier, I think that is one major lesson that I already knew, I think, but definitely these conversations have reinforced that big time.
Emily Gindlesparger: What moments from those stories that you’ve heard from parents have stuck with you?
Jessica Burdg: There wasn’t one of these interviews that I did not cry in, or parents didn’t cry in. So, I am doing my day job, then I have an interview for this project, and I get on the phone for my day job after and I’m just a weepy mess and they’re like, “what’s happening?” I was usually okay by then. But it really is astounding to me. Astounding how these parents, with no financial compensation, who have a million things to do for themselves, for their families, for their children–and they are taking time out of their day to schedule with me, to talk to me, a stranger, and then I am asking them about their most challenging moments in their lives and they just tell me.
They just tell me because at the beginning of every interview I would obviously introduce myself and tell them about the project, and at the end of the day, we’re trying to provide resources and hope for the differently-abeled community and that was enough.
You know, the idea that it might help somebody else was enough for them to go deep. We go very deep sometimes. So, I just want to say that the big answer to your question is the fact that they talk, the fact that they share what they share is monumental in and of itself.
However, I think one of the most striking stories for me is Gabe’s story. He is the first one we put in here and actually one of the last–his mom was the last one that I interviewed for this book.
But he is the first story up and he, Gabe, is autistic but he is so much more than that. When I was speaking to his mom, she shared her story, which is a harrowing story. Gabe’s dad passed away when Nicole was pregnant with Gabe. So, she was left caring for a child who was developing a little bit slower than some of his peers. He didn’t have a diagnosis yet, but she could tell something was off and she was doing it alone.
Their family wasn’t there, she didn’t have a lot of close friends. I can’t imagine going through something like that. Then recently, she also found out that she was diagnosed with breast cancer. So, it was like this sequence of challenges. Again, the astounding thing was we were talking about all of these things and that any one of those things could break someone. But she was saying how much Gabe has taught her about what it really means to be alive, like the little things. Out of all of those tragedies, she was grateful.
I think that’s kind of the message that I got from a lot of these parents is they don’t dismiss the challenges of these situations at all, but they just approach them. I don’t want to lump everybody in, but generally, the ethos here is they approach them with this sort of understated grace and looking at the beautiful things without ignoring the pain of the hard things, which thereby makes the beautiful things all the more beautiful. So that’s really what I love about this project and continue to love about it.
Emily Gindlesparger: Do you see the project continuing?
Jessica Burdg: Yes, the project is continuing. We want to get this book out first, which comes out August 11th, and then we will continue. I’ve got several interviews in queue so maybe there will be a book two.
Emily Gindlesparger: That’s fantastic. Yeah, I was so struck by how many of the parents remarked that their children had taught them so much, including how the parents could care better for themselves. That seems like such an important component for any parent, learning how to navigate life this way.
Jessica Burdg: Yes, 100%. That was really important to me to cover in these interviews was the self-care piece. I think a lot of times when we talk about children who are differently-abled or children who have challenges, rightfully so, much of the conversation is, again, rightfully focused on that child.
But I really wanted to lean in here on what it’s like to be the parent of a child who is differently-abled because the parents coming to these articles look for that hope. They look for that feeling of being seen wholly for their journey. Yes, they want to hear about all of the positive things and the treatments and all of that, but they are people too and those self-care pieces, everyone had a different answer about how they went about it. Some admitted that they should do it more often, some say it was a huge priority for them, but no one denounced its importance, especially in these situations.
It’s the whole oxygen mask thing that everyone always says. You have to put yours on first. That was important for me to specifically ask.
Emily Gindlesparger: Tell me a little bit more about what your work was like at Ronald McDonald House? It sounds like that was impactful.
Jessica Burdg: Oh, yes. When my oldest daughter was born, she was premature, and she had a collapsed lung and then pneumonia in the other lung. So, we spent quite a bit of time in the NICU and I stayed at a Ronald McDonald House near the hospital during that period of time. I was very close to that foundation and also the March of Dimes and the hospital.
So, a couple of years later when Ella was healthier, and a little bit older, I worked as the family room manager for the Ronald McDonald House in that hospital–the Children’s Mercy Hospital in Kansas City, Missouri.
What happened would be families whose children were in crisis, whether that be in the PICU, the pediatric intensive care unit or the NICU, the neonatal intensive care unit, they were being stabilized or they were needing overnight care or they were being life-flighted in from X-Y-Z location, it was kind of like a mini-hotel. We would have volunteers come and I would coordinate meals. I would make beds for everyone, check them in, make sure they had everything they needed when the doctors called. I would give them the privacy room. Just sort of a quiet space, a human space in the midst of this huge crisis. I never put that together actually, but I think I learned a lot in that role that prepared me for talking to these families because I try to meet everybody where they are.
If you go into a situation knowing where someone is or could be, and it is very challenging, and you approach it more gently–I think that is why people are more open to talking with me. So yeah, I think that’s a great question. I genuinely never put that together until just now.
Emily Gindlesparger: Yeah. Well, then it really ties in with this overall theme of vulnerability that runs throughout your book. You know there is your ability to hold space for these families that you have interviewed and there is also their willingness to be really vulnerable about their experiences because they know how impactful that could be to another family, to hear a story that is like theirs.
Jessica Burdg: Absolutely and that is what I hope people take from this book. You know, really, this book is for the parents, and I say that very explicitly and I really, really mean that. It’s for these parents and the parents that their stories can touch. But for everyone, I hope that that sort of vulnerability and that sort of holding space for people can become the rule, not the exception when we communicate with one another and try and listen. Especially when we don’t understand. That is really what I would hope would come from this.
Emily Gindlesparger: I have to say that the whole premise is so beautifully modeled by your writing and by the way that each of these families tells their stories, so thank you. Thank you so much for bringing that together.
Jessica Burdg: Yeah, again it is really a gift to me to be able to do this and to still be friends with these families. I still see Beau’s updates on his mom’s Instagram, and we message hearts back and forth, all of the little milestones, the little goals. I feel like my family has grown from doing this project.
I am very proud of it. I am very proud that all of the proceeds go back to the foundation. They go back to Who is Carter, which is the foundation that funds The Brain Possible, and all of those same places and same people. I’m really excited for the parents to get this book in their hands and everyone else too.
Emily Gindlesparger: Yeah, well thank you so much. It’s been such a pleasure talking to you and being able to put this book out in the world is such a feat. Once again, the book is More than a Diagnosis, and besides checking out the book, where can people find you?
Jessica Burdg: Okay, so my personal website where I have this book and then my additional writing of bylines is jessicaburdg.com. There is a website specific to this book, where we hope to have updates from the family’s featured. So, if you are interested in a particular family story, there may be updates posted, and any sort of additional information on therapy mentioned in the book, and that sort of stuff, thebrainpossible.com/more-than-a-diagnosis.
Emily Gindlesparger: Thank you so much, Jessica, it’s been such a pleasure to have you.
Jessica Burdg: Yeah, thank you, Emily. I appreciate it very much.