Shumin: Hi everyone, welcome to The Extra Mile - a podcast sharing stories, conversations, and practical wisdom from Singapore’s Down Syndrome community. I’m Shumin, and today I’m joined by my very first special guest, to help introduce this podcast. He is also my biggest cheerleader and the reason why this project could take off in the first place – my husband, Zestin.
Thanks for coming on with me here, Zest. Pressing record for the first time takes so much courage, and having you here really helps.
Zestin: I’m glad to be here Shums - thanks for having me.
Shumin: Why don’t we start by sharing a little about ourselves and our family. I’m Shumin, wife to Zest, and mother to our two girls, our 3 year old, Mia, who has Down Syndrome, and our 4 month old, Maisie. Since Mia came along, I’ve been staying home full-time, but in my past life, I was working as a social worker in a community setting.
Zestin: Hello everyone, I’m Zestin, I’m husband to Shumin, and father to our two lovely girls. I’ve been working in public service, but am currently on leave pursuing my graduate studies full-time.
Shumin: How would you describe our girls, Zest?
Zestin: Mia is a cheerful little girl with bright, beautiful smiles. She loves fist-bumps and hi-fives, offer her a fist bump and you’re instantly a friend. She loves walking in the park, flipping through books, and most of all, listening to music and singing along. Maisie loves watching Mia and listening to her singing.
Shumin: Yes! Maisie adores her big sister! She calms down so quickly when she hears her sister’s voice! It’s been so nice seeing Mia grow into this new role, and learning how to love her little sister.
Zestin: I can’t wait to get to know more of Maisie’s personality too.
Shums, this is the first time you’ve done podcasting. Could you share about what got you started into podcasts, and what inspired you to start one yourself?
Shumin: I was never quite a podcast listener until I became a mom. My hands are often always full, but my mind craves for more stimulation. And I find podcasts really enjoyable as a form of engagement. I listen to them when I’m nap trapped, on drives to therapy, medical appointments, school runs, or while folding laundry or meal prepping. I listen to many podcasts produced overseas about disability and Down Syndrome. They are very helpful, but I generally find that their content or resources are not as relevant or applicable to our context.
So recently, maybe it’s the postpartum hormones that brought along some creative juices and impulsivity. I thought - hey, why not create a podcast platform to highlight stories and lived experiences within our uniquely Singaporean context! I believe there are many precious perspectives and insights not yet told, and I personally want to listen and learn from them. I think many others in our community would benefit from them too. My social worker brain got really excited at this prospect. I thought that this is an area where I can tap on my past work experience and skillset to offer something important for this community, also as a way of giving back.
I started doing some research, chatting with a few trusted friends about the idea. I also came across a similar podcast channel called ‘Coffee & Chromosomes’ started in the UK, also by caregivers of a child with Down Syndrome, and got even more inspired as I listen and learn from them.
Thanks Zest for also entertaining all my different ideas all these months. :)
Zestin: I want to say it’s been amazing seeing your passion in learning podcasting from scratch to kickstart this platform. Also, I personally love the name you chose for the podcast, the ‘The Extra Mile’, could you speak a bit about how you decided on it?
Shumin: The name ‘The Extra Mile’ is first inspired by the fact that Down Syndrome means an extra chromosome. And for people with Down Syndrome, that one extra chromosome means their road to growing and learning often requires many more extra steps, and much more time, practice, help. And as Mia’s parents, we are here to walk this extra mile with her, however long God allows. I’ve seen so many other fellow dedicated caregivers around us do just the same, choosing everyday to walk this extra mile with their child, no matter the challenge, no matter the distance. And ultimately, I hope that growing in knowledge about Down Syndrome can cultivate more empathy in our society, and promote a culture where people are willing to go the extra mile for one another. I love that this name has so many layers of meaning to it, and I thought it’s especially appropriate for this podcast, where I hope to feature many caregiver stories and voices.
Zestin: Yes, I hope that’s a name that will resonate with many listeners. Could you also share more about your hopes for this podcast, and who you hope would listen in?
Shumin: Well my hope for this podcast is really very much formed by our experiences with Mia. When we first started on this journey with her, receiving the diagnosis at the prenatal stage, the diagnosis sounded so scary and threatening. There was nothing good about it, it was all doom and gloom. Some doctors, well-meaning, emphasized to us how hard life ahead would be for Mia and for us, with all the potential complications associated with Down Syndrome. We looked online but it was hard to find stories that shared more details about the realities of caring for a child with Down Syndrome.
I think disability parenting is often an act of balancing dual emotions, both the deep ache and grief, and at the same time, the pride and all the joys. And in these past 3 years, some of the most helpful advice and encouragement we have received has really been from other caregivers who are ahead of us in this journey, who are also balancing all these emotions and realities everyday.
And I believe that there are so many stories out there. Through this podcast, I hope to earn the trust and be given permission to seek out authentic stories, and offer the space to share the good, the hard, and everything in between. I want people to see that with Down Syndrome, fear is never the whole story. I also want to capture unique experiences and insights from others’ journeys so that we can all learn together, for example, experiences specific to medical needs, education, therapy, and even financial or long-term planning. There is something really powerful about stories, and I hope to harness that power to help even just one more person.
And my goal is to slowly grow an archive of conversations about real, lived experiences of Down Syndrome. So that caregivers can listen in and feel heard, encouraged and supported. And others who listen in, be it friends, family, professionals and even public members, can learn more about Down Syndrome, and be empowered to support and care more for persons with Down Syndrome. May this also be another small step towards better understanding and inclusion in the longer run.
Zestin: Yes we’ve certainly benefited from conversations with other people on this journey, and I’m looking forward to the insights shared by the guests on this podcast. Speaking of guests, who can your listeners expect to hear from through The Extra Mile?
Shumin: For a start, they can expect to hear from parents who are caring for their child with Down Syndrome, hopefully both the mums and the dads! I would love to eventually hear from the surrounding community, for example, the siblings, the grandparents, friends, church community. The professionals as well, such as the special education teachers, social workers, therapists. And of course, I would love to get to hear from people with Down Syndrome too!
To all of you listening out there, thanks for being here. It means a lot. If you have any ideas, if you’re someone who is willing to come on for a conversation, or know of someone who might be, you can drop a comment here, or connect with me on Instagram at theextramilesg, or email me at theextramilesg@gmail.com. I also look forward to hearing any feedback or comments from you.
And once again, welcome to The Extra Mile. See you in our next episode. :)