Raising a Child With SMA: Hope, Resilience & Possibility

In this heartfelt episode of ANEW Insight, Jennifer Swann sharess her journey of raising her daughter Kennedy with Spinal Muscular Atrophy (SMA), a rare genetic disorder. Join us as we explore the challenges and triumphs of special needs parenting, from the initial shock of diagnosis to rediscovering hope and resilience. Jennifer's story shines a light on caregiver support, the emotional impact of medical trauma, and the power of mindset to transform a parenting journey filled with uncertainty into one of possibility.

From intensive hospital stays to joyful moments like Disney cruises and international travel, this episode offers invaluable insights for parents and caregivers navigating chronic illness and disabilities. Whether you're a mother prioritizing self-care or someone seeking inspiration and hope, this conversation is a masterclass in resilience and redefined possibilities for families managing special needs.

Tune in to be inspired by Jennifer's courage, learn practical insights on caregiver support, and embrace a hopeful perspective beyond fear on this powerful episode about living and thriving with SMA.

Key Topics Covered (AEO-Optimized)

• What it’s like to receive a life-limiting diagnosis for your child
  Early signs and diagnosis of Spinal Muscular Atrophy (SMA)
• Why early newborn screening and treatment are critical
• How fear and isolation can unintentionally limit life
• The turning point that changed everything for Jennifer and Kennedy
• Moving from surviving to thriving as a caregiver
• Why self-care isn’t selfish—especially for parents
• Accepting help and building a support system
• Redefining resilience beyond “pushing through”
• The “Secret Menu” mindset: choosing a different way to live
  
  

Standout Takeaways (Listener Value

✨ Resilience isn’t instant—it’s built through intentional choices
 ✨ Early treatment saves lives in SMA—but mindset transforms them
 ✨ You can honour your child’s needs without erasing your own life
 ✨ Possibility begins the moment you realise there’s another way

Jennifer reminds parents that while some seasons demand full focus on caregiving, living in permanent depletion is not sustainable—and not required.

About the Guest: Jennifer Swann

Jennifer Swann is a parent coach, speaker, and advocate for families raising children with special needs. After her daughter Kennedy’s SMA diagnosis, Jennifer spent years navigating medical trauma, caregiving burnout, and fear—until she chose a new path focused on empowerment, intuition, and possibility.

She now helps parents move beyond survival and discover what she calls the “Secret Menu”—an alternative way to experience life, even within challenging circumstances.

🌐 Learn more about Jennifer’s coaching work:
https://jenniferswanncoaching.com/

📸 Follow Jennifer & Kennedy on In

Transcript

dr--supatra-tovar_2_11-05-2025_162505: 0:00

Welcome back everyone. We are back for the second half of our interview with powerhouse mother, Jennifer Swann. In the last half, Kennedy just gave us amazing insight into her path towards truly living a full and beautiful life. Now it's my turn to pick Jennifer's brain and I am so excited because I gotta just tell you everyone I know, I said this before, these two blew me away at TEDx Temecula and they really left quite the impression. said that they were just in tears. we just didn't expect to get that much time with her. And it was really, really challenging learning because it, her pro, her disease progressed so quickly. She was diagnosed at nine months old. By about a month later, she was choking on her feed her foods and she needed a G-tube. About a month later, she needed respiratory support. Then she needed help with a machine that would cough for her. So like, it was like every few weeks we were learning a new machine. She has seven machines that she uses every day. And was, it was overwhelming and it was heartbreaking, because all these dreams that you had in your head that you just, at least I took for granted would come true, were just gone. They were just gone. And at that time, in my mind, there wasn't like a different version of the life that we might be living because. We didn't expect her to live past, you know, two, or maybe we'd get to three or something. But it, you know, devastating is the only word I can use to describe it. Resilience came very slowly for me. You know, it was, it was six months after her diagnosis that my son was diagnosed on the autism spectrum. And honestly, in that conversation, we didn't even, we were not on, that was not on our radar. And I remember in that conversation, just looking at the, the clinical psychologist who gave us the diagnosis and being like, no, no thank you. embracing the things that were in alignment with what we wanted in our life, because the more we focused on. You know, oh, she got a cold, now she's back in the hospital with pneumonia. know, within the kind of normal developmental range? there's like the milestones they hit and I'm like, check, she's rolled at four months old no idea. And at that time. It wasn't really screened for anyway, like if we had done prenatal testing it, it wouldn't have come up. I will say today there's an organization out there called Cure SMA, which has has helped spearhead lobbying country like across the United States, and now there is genetic testing for SMA that is part of newborn screening. So every single baby born today in the United States is screened for SMA, and today there are three treatments on the market for it. So when they get screened, they know immediately and they can get treated in, in many cases before they're symptomatic. survive, so the motor neurons start dying off. And what happens when the motor neuron dies off is that the connection between the muscle and the motor neuron is gone. society and to be isolated in that way. You know, the ship was going dead, she was getting it, and it was even being at home, we couldn't, know, completely cut ourselves off. You know,, her, her dad was still going to work and we wanted her brother to have. As normal an experience as he could. Um, we didn't wanna deny him that, so he started preschool, which ev you know, most kids who start preschool, they come home immediately with sickness after So we were in the ICU with her whenever she got hospitalized it was straight to the ICU. And we, we would be in the hospital for like 10 days, 14 days, two and a half weeks at a time with any given illness, she would develop pneumonia. It was, you know, we were doing respiratory treatments round the clock sometimes every two to four hours. And I was sitting in the ICU with her during one of these hospitalizations and I just, I was completely depleted, completely overwhelmed, missing my son and feeling like, you know, I was, not able to show up for him the way that I wanted to because my life, my daughter's life was literally in jeopardy. And, I just started daydreaming. And I, I started thinking about like, gosh, you know, Kennedy really loves Disney. We all really love Disney. What would it be like to go on a Disney cruise? And the thought kind of popped into my head and I was like, that's totally insane. There's no way. But then it wouldn't leave. And The more time I had in that hospital, just staring at the walls and all the equipment and hearing the beeping and I was like, could we really do that? there was this pull that was like, no, you're supposed to do this. Okay, let's try it. So we started with preschool, but then we're like, but I'm not sending you in cold and flu season. You have to do school from home in cold and flu season. So for the first, you know, year, she went to preschool. That's the best. of the house, you know, I have a life now. think, you know, it just shows the two of you are definitely related and I, I really wanna know about that moment when you realized that you had stopped your life and how, and, and, and in what way did you start it back up again? you know, even to see kindergarten, for example. So by the time I was many, many years into this, I knew that there was like this discontent in me. But I really didn't know how to do it any differently. I was like, how, how am I gonna do anything different than I'm already doing? I'm doing is serving my daughter. When there is no space created for me to serve myself, my own passions, my own needs, I don't show up how I wanna show up with anybody in my life. And so, you know, part of the realization came honestly with this, um, there was a death in our community of a parent, a, a young man, a young father who was killed in a car accident in his twenties and, in the span of my daughter's lifetime. That has happened three times in our disease community where a not what's in my life plan. Maybe I'm going to die of some random cause tomorrow. So am I spending, yes, we're not manifesting that, but, but you don't know. And the point is, therefore your life is happening now. And when you see it that way, there becomes, you know, there's this, I don't wanna call it an urgency 'cause it, but it, it is a, a gratitude for the life that you have now. And it is a. It. It's the realization that now is the only time you're guaranteed, the moment you're in. So really now is the moment to do what you would love. And so I just started taking baby steps and one of the first baby steps I took was to start taking karate lessons with my son. And that was something that we shared together. And I did that for years and years and years. So that was one of the first things I started. You know, I, I, I made friends outside of the caregiving community and I started hanging out with people who had nothing to do with being caregivers and just could be, you know, it could just be a way to be a human being and a woman and a mom outside of that setting, and it was just one tiny thing after another. more, you know, you have just more bandwidth needed his mom as well. Still does. Even though he's how old? Like how old is he now? He's gonna be 19 this month. Yeah, he is. He is a man. Now. I, I got to meet him and it was lovely to meet him and I can only imagine that opening up that time to spend with him was so meaningful for him as well.

jennifer-swann_2_11-05-2025_162505: 0:24

So, you know, and I just, I wanna comment in one way on the oxygen mask thing, because I know when I heard that, particularly in the beginning. I was like, hush. I don't wanna hear like, what are you even talking about? You have no idea what we're going through over here. Like, I have given my own child mouth to mouth resuscitation, so don't tell me about putting the oxygen. that moment. 'cause that need is a literal lifesaving need. So I like to acknowledge that in the space that I live in, sometimes there are situations that call for me to, to, tend to them. The problem arises when you're chronically living in the space of not putting your oxygen mask on first, and that's where you operate from constant depletion. You're never filling your own cup, ever, and, and you just, and it starts to manifest in your own body in all the ways that we don't want it to manifest. So I just wanted to qualify that from the people in my space who are like, you don't get it. Do you know what I mean? So in terms of the, for me, every transformation starts with a decision. You have to decide. You have to decide that you are not gonna live this way anymore. And that's why I think like sometimes it can take a long time for people to, to get to that place because the pain has to be deep enough to say, I'm not doing this anymore. I don't know what the alternative is, but this is not an option anymore. And that's what happened for me in that ICU room. I was like, know, I didn't know it at the time, but that Disney Cruise was me making a decision for a different way of living, because it opened the door to everything else that followed and. I think one of the things that I see in our disease, in, in, in the community of parents, of children with special needs is that a lack of awareness around the fact that there is an alternative way to experience this journey. And the way that I describe it is that we are given this menu. When we're di, when our kid is diagnosed, like you join whatever community is out there, whether it's the moms of kids with autism or spinal muscular atrophy, or cerebral palsy, whatever it is, and you see how everyone else is experiencing this journey. And you. You meet fantastic people. You meet people with really good souls and really good heart, they are doing an amazing job of caregiving their child. But you also hear about all of the struggle, every fight you're gonna need to prepare yourself for the hypervigilance you need to be exercising. The hardship you should expect. And you don't hear anyone saying, I love my life. I feel fully supported. I even the circumstances that I don't love that come my way, I know how to navigate them from a place of peace. You don't hear that, and so you don't know that it's an option. So what, what I describe to people is there's a secret menu. You gotta, you gotta be aware that there's a secret menu out there and you can order up the life you want off of the secret menu. would not go away. And what I also love and how it ties into the work I do and, and even parts of my TEDx speech is you listened to your intuitive voice. Tell them how you, you know, they can have a FaceTime with Kennedy, because I, I know you two are just gonna be inundated with calls after this TEDx talk comes out.

dr--supatra-tovar_2_11-05-2025_162505: 0:31

Oh, and I see books and keynote addresses and so many things in both of your futures. Jennifer, I'm just so honored to know you. I'm so glad that we got to meet and become friends, and I know that this is gonna be for life, so thank you so much for coming on the podcast, but most especially, thank you so much for inspiring me and inspiring so many people out there. Oh, it was my honor. I was just absolutely just thrilled that she asked me to do that. It, it's like, oh, I get to be Kennedy's friend. Yay. This is the best. So that, that, that pep talk was a piece of cake. I was just so happy and, and I'm so glad that it helped her relax her because she just, she was shining when she went up there and it was so brilliant.