Episode 1: Living Between Extraordinary Gifts and Extraordinary Uncertainty

In this deeply personal introduction, I share the story that inspired this podcast—my journey as the mother of a daughter diagnosed with autism at just two years old. From the uncertainty of those early days to the loneliness, resilience, and unconditional love that have shaped our family's life over the past 17 years, this episode is an honest conversation about what it really means to parent a child with disabilities.

If you've ever felt overwhelmed, misunderstood, or alone on your caregiving journey, this podcast is for you.

Because no parent should have to carry this kind of love alone.

Transcript

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My daughter can hear a song once and play it by ear. She knows things I've never taught her. She surprises me every single day. And yet she can't safely cross the street by herself. If you're a parent raising a child with a disability, you probably understand exactly what I mean. You know what it's like to witness extraordinary gifts while carrying extraordinary worries, to celebrate incredible victories while wondering what tomorrow will bring. To love someone so completely that your heart lives somewhere between overwhelming joy and overwhelming uncertainty. People often ask me what it's like to raise my daughter. The truth is there aren't enough words. It's beautiful, it's exhausting, it's heartbreaking, it's inspiring, it's lonely, and somehow it's all those things at the very same time. That's what loving a child with a disability can feel like: living between extraordinary gifts and extraordinary uncertainty. The name of this podcast is Agape Love. If you've never heard the word agape before, it comes from the Greek language and describes the highest form of love, a selfless and unconditional love. It's love that isn't earned, it isn't based on circumstances or expectations. It doesn't disappear when life gets difficult. It simply chooses to love again and again. When I became the mother of a child with a disability, I didn't know where the word came from or where what kind of love that what that even meant. But looking back, I realize that it's really been agape love all along. It's the love that keeps showing up after another sleepless night. It's the love that advocates when you're exhausted. It's the love that celebrates milestones the rest of the world might not even understand or they may even overlook. It's the love that believes in your child, even when the future feels uncertain. And it's the love that binds together a community of parents who understand one another without ever having to explain a thing. My name is Maya, and this is Agape Love, a place where parents and caregivers can come and share their stories, honor their journeys, and remind one another that unconditional love should never have to be carried alone. Welcome to Agape Love. A little bit about my story. I'm a 54-year-old mother of three incredible children. I have a 24-year-old son who is neurotypical, and I have twin daughters, Josie and Cassie. They'll turn 18 next month, and Josie is neurodivergent. For nearly 17 years, our family has been on a journey that I never expected to take. And I think I'm finally ready to tell my story. When Josie was about 15 months, I began noticing differences. They weren't dramatic, they were just different. As parents, we spend so much time comparing milestones, not because we want to compare our children, but because that's just what we do. I found myself comparing Josie to her twin sister. And I remember thinking, maybe she's just developing at her own pace. She'll catch up eventually. I had a wonderful pediatrician who listened to my concerns instead of dismissing them. She gave me a developmental questionnaire to complete and carefully reviewed the results with me. Before anyone even mentioned autism, she wanted to rule out everything else. Looking back, I'm so grateful that she took that approach because it gave me time to think about what I what I thought a diagnosis might mean for my family. I had no idea. Then when Josie was 24 months old, she was officially diagnosed with autism spectrum disorder. I remember hearing the words, but if I'm being honest, I had no idea what they really meant. And of course, they don't hand you a manual, they don't tell you what tomorrow looks like, and nobody explains how the diagnosis will reshape your family and your dreams, your routines, your marriage, or even the way you see the world. I was married at the time, and I assumed that we would navigate this journey together. But diagnosis affect people differently. Looking back, I believe my former husband was overwhelmed. I think he loved our daughter deeply, but fear and uncertainty can look different in different people. Sometimes it looks like denial, and sometimes it looks like withdrawal. Sometimes it looks like just not knowing what's next. And I know many parents that are listening can relate to exactly what I'm saying. But for me, it meant I became a person who had to find the answers. I became the researcher, the evaluator, the advocator, the appointment scheduler, the therapist's partner, the one making all the phone calls, filling out the paperwork, and everything I needed to do to understand my daughter's diagnosis. Our pediatrician immediately connected us with early intervention services and pointed us towards resources that could help Josie begin to receive support that she needed at an early age. At the time, I had no idea that one referral would become the beginning of a journey that would shape the rest of our lives. And if you're listening today, because your child was recently diagnosed, I want you to hear this. You don't have to know everything today. You don't have to have every answer. You only have to take one step at a time. That's what I did. Take the next step, one step at a time. Looking back now, so much of those first few years are a blur. I don't remember the appointments. I don't remember the evaluations, the paperwork. It just all felt overwhelming. But what I do remember is how I felt. I remember feeling like I had to figure everything out on my own. I remember trying to understand the diagnosis I had never imagined would become a part of our lives. I remember learning a completely different way of parenting, teaching, celebrating progress. The world tells us that children should reach milestones in certain orders and in certain at a certain pace. But raising Josie taught me that there isn't just one way to learn. Every child on the autism spectrum is beautifully and wonderfully different. There's a saying in the autism community: if you've met one person with autism, you've met one person with autism. And nothing could be more true because every child has different strengths and different challenges, personalities, dreams, and just the different ways that they show up in the world. Things that many parents take for granted suddenly become an entirely different experience for us. Potty training and friends, making friends, and birthday parties and crossing the street safely, sleeping through the night, my goodness, family vacations. Everything is viewed through a different lens. And while I was learning how to help my daughter navigate the world, I was also trying to figure out who I was becoming. How do I continue to be the best mother that I can to all three of my children? How do I continue being a wife? How do I care for myself while caring for everyone else? Those weren't questions that I could answer overnight. In many ways, I'm still answering them today. And maybe that's why this podcast matters so much to me. Because I know there are parents listening who are asking those very same questions. If that's you, I want you to know something. You don't have to have all the answers to be an incredible parent. Sometimes the greatest gift we give our children isn't having every solution. It's simply showing up again and again. I learned on this journey that where you live can make a tremendous difference in the supports your family receive. If you're fortunate enough to live in Allegheny County, Pennsylvania, I want you to know that there are incredible resources available to your family. During the years we lived there, I was introduced to programs and professionals who helped me begin to understand autism in ways I never could have on my own. One resource that had a lasting impact on our family was through the University of Pittsburgh Medical Center, UPMC. The guidance, education, and support I received gave me confidence during a season when I desperately needed it. So to the professionals, therapists, caregivers who walked alongside us during those years, I will always be grateful. You were part of our story, and your compassion made a difference. After my divorce, we moved back to Cleveland, Ohio, my hometown where my family still lives. Like many families, we had to start over. We had to build new support systems, find new providers, learn new processes, and navigate entirely different networks of services. The transition wasn't easy. The services and resources available to us were different. And once again, I found myself feeling like I had to figure everything out on my own. Loneliness has a way of showing up during life's transition. It shows up when you're sitting alone in a waiting room and when you're filling out paperwork, no one can explain to you when you're searching for answers that don't seem to exist. But even in those lonely seasons, something remarkable happened. We kept moving forward. One appointment at a time, one challenge at a time, and one victory at a time. Today I can honestly say we've grown into a healthy, resilient family. Not because our journey was easy or because any of the obstacles disappeared, but because love kept showing up. That's what agape love looks like. It's not perfect and it's not effortless. It's simply the decision to keep moving, to keep believing, to keep loving, and to keep moving forward, even if the path seems unclear. As I think back over the 17 years, there have been so many stories, and there are so many stories to tell. Stories about fear and joy and mistakes, and stories about victories that most people would never even notice that meant the world to our family. Stories about marriage and divorce and siblings, schools, friendships growing up and learning to let go. And stories about discovering love that I never knew existed. We'll talk about all that, but not today. Today I simply wanted to introduce myself and to tell you why this podcast exists. And to let you know that if you've ever felt overwhelmed, exhausted, misunderstood, or completely alone on this journey, I've been there too. My hope is that every time you listen to Agape Love, you'll leave feeling just a little lighter than when you arrived, that you'll find comfort in someone else's story, that you'll discover practical wisdom, and that you'll laugh with us, cry with us, celebrate with us, and most importantly, that you'll never again believe you're walking this journey alone. Thank you for trusting me with your time and allowing me to share a small part of my family's story. Next time, I'd like to share something every parent remembers. The moment they realized that their life wasn't going to look the way they had imagined, and how that realization became the beginning of something unexpectedly beautiful. Until then, remember this your love matters, your child matters, and no matter how lonely this journey feels, you are not alone. This is Agape Love.