Dear Friends,
The holidays can be a beautiful time of connection, joy, and celebration—but for caregivers, it can also be a season that amplifies the weight we carry every day. The expectations, the comparisons, the logistics of making life work for our kids—it all feels louder somehow.
This episode is my friendship letter to you, my fellow caregivers, during this holiday season. It’s for the days when the to-do lists are endless, the appointments keep coming, and the social invitations feel more isolating than joyful. It’s for the moments when you catch yourself scrolling through social media, comparing your life to others, and questioning if you’re doing enough—or if you’re enough.
Spoiler: You are.
I recorded this as a 10-minute refuge for you—a place to breathe, to feel seen, and to remind yourself that you are not alone. Together, we’re navigating the chaos, the exhaustion, and the love that grounds it all.
If you’re like me, you might feel the weight of it all a little more during this time of year. Maybe you’re thinking about your child’s progress or lack thereof, or the struggle to attend even the simplest gatherings without feeling out of place. I see you. I feel you. And I hope this episode feels like a warm hug and a reminder that you’re doing an extraordinary job in an extraordinary situation.
Every day you carry your child—physically, emotionally, and mentally—is a gift. It’s heavy, yes. But it’s also rooted in a love that’s unshakable.
Take a moment, my friend. This one is for you.
With love and gratitude,
Effie 💛
P.S. If this episode resonates, share it with another caregiver who might need it. We’re stronger when we remind each other we’re not alone.
[00:00:03] I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for us to connect and share the stories of our not-so-typical lives. Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating. What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.
[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get.
[00:00:43] Once Upon A Gene is proud to be part of Bloodstream Media. Living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience.
[00:00:56] This is why Bloodstream Media produces podcasts, blogs, and other forms of content for patients, families, and clinicians impacted by rare and chronic diseases. Visit BloodstreamMedia.com to learn more.
[00:01:08] Hey friend, it's Effie Parks here, and I want to welcome you to this little special holiday episode of Once Upon A Gene.
[00:01:18] As the air turns crisp, and the world dresses itself in twinkling lights. I know for so many caregivers and parents of children with rare disease, the holidays can feel like a double-edged sword.
[00:01:32] On one hand, there's the magic, the nostalgia, the tradition, the food. Maybe you've got your favorite holiday playlist on repeat, or the scent of peppermint cocoa drifting through your house.
[00:01:49] And on the other, there can be heartache and heaviness. You worry about your child's health. You fear about what the future holds. You aren't a part of all of the parties, nor can you go.
[00:02:04] And the uncertainty of how to navigate a world that seems to be moving at a festive pace that you can't quite match.
[00:02:13] Maybe you've been feeling a little out of step, out of sync, and unsure how to celebrate when your heart is tangled up like a string of lights in so many emotions.
[00:02:25] I walk this path, and I know I'm not alone.
[00:02:29] If you're feeling isolated or overwhelmed, let me tell you.
[00:02:35] You are seen. You are not forgotten.
[00:02:38] The extra stuff that comes with this season, the family gatherings, the traditions, the expectations, it can feel like too much.
[00:02:50] But take a breath right now.
[00:02:54] Inhale and exhale.
[00:02:57] Inhale.
[00:02:58] It's okay if your holidays don't look like a Hallmark movie.
[00:03:02] And it's okay if there's a quiet sadness beneath all of the tinsel and sparkle.
[00:03:09] As Brene Brown once said,
[00:03:12] vulnerability sounds like truth and feels like courage.
[00:03:17] Sometimes just admitting this is hard, admitting that the holidays and the weight you carry don't perfectly align, might be one of the bravest things you do this season.
[00:03:29] It takes courage to say,
[00:03:31] This year, I'm letting go of the old expectations, and I'm embracing what works for my family right now.
[00:03:40] I remember talking with a fellow rare parent a while ago, and she said that that holiday, they decided to celebrate at home.
[00:03:51] Just them.
[00:03:52] No extended family, no big meal, no pressure.
[00:03:57] They ordered pizza and watched movies.
[00:04:00] And for the first time in a long time, felt like they could breathe.
[00:04:05] Her words stuck with me.
[00:04:07] There's no one right way to honor this season.
[00:04:11] What matters is that you create a space that supports the well-being of you and your child and your family, rather than straining to fit into a mold that's never really served your family.
[00:04:23] We can do hard things.
[00:04:25] You've already done a lot of hard things.
[00:04:28] I know that for certain.
[00:04:30] You've advocated fiercely for your child.
[00:04:33] You've learned medical jargon.
[00:04:35] You never asked to know.
[00:04:36] You've rearranged schedules and priorities in a thousand different ways.
[00:04:42] You've watched the clock in the hospital rooms, waiting for test results.
[00:04:48] You've shown up over and over again, even when you're exhausted.
[00:04:54] Now show up for yourself in this holiday season, too.
[00:04:59] Show up in a way that brings you comfort.
[00:05:02] Maybe that's baking cookies at midnight when, let's be honest, you're probably already awake, but when the whole house is finally quiet.
[00:05:10] Maybe it's just lighting a candle and sitting in silence.
[00:05:14] Maybe it's sharing your story online with a community of people who truly understand because they're living this, too.
[00:05:23] I have shared so much of my own journey over the years.
[00:05:27] Ford's story.
[00:05:28] The ups, the downs, the pain, and the love.
[00:05:32] Because I believe in the power of storytelling.
[00:05:36] Telling your story connects you with others who get it.
[00:05:39] And connection is a lifesaver.
[00:05:41] When you post on social media, write for a blog, or send a heartfelt message to a fellow caregiver, you are reminding someone else out there that they are not alone.
[00:05:54] And, you know, in doing so, you remind yourself that you're not alone either.
[00:05:58] A special advocate once said to me,
[00:06:01] We decided that instead of racing around to every holiday event, we would choose one thing that brought us joy and let the rest go.
[00:06:09] This year, it's going to be one afternoon of decorating gingerbread houses with our daughter.
[00:06:14] That's it.
[00:06:15] Everything else can fall away.
[00:06:18] Hearing that taught me something wonderful.
[00:06:21] Simplicity can be a form of self-care, especially this time of year.
[00:06:25] Letting go of what doesn't serve you and embracing what does can be an act of rebellion against a world that sometimes tries to pressure us into perfection.
[00:06:36] I don't know who made this quote, but I think about it a lot in lots of ways in our life.
[00:06:41] And the quote is,
[00:06:42] When you change the way you look at things, the things you look at change.
[00:06:45] And I believe that from a mindset.
[00:06:47] I think about that a lot.
[00:06:48] And if you can shift your mindset from what's missing and what's not working or what you can't accomplish this holiday season and focus instead on the love that exists and the small victories and the quiet joys,
[00:07:05] you might just find a profound sense of peace.
[00:07:09] That doesn't, of course, mean ignoring the hard stuff.
[00:07:13] It means welcoming it all in, sitting with it and letting it be a part of your story.
[00:07:21] You can feel sadness and still find comfort in a soft blanket and hot cuppa, okay?
[00:07:28] You can feel frustrated and still belly laugh at a silly Lindsay Lohan holiday movie.
[00:07:35] You can carry disappointment and still hold on to hope for dear life.
[00:07:39] All of these emotions can coexist.
[00:07:41] Holidays can bring nostalgia and longing.
[00:07:44] Maybe you are missing out on how things used to be before a diagnosis changed your family's life.
[00:07:50] That's okay.
[00:07:52] It's natural.
[00:07:53] Let yourself grieve what could have been and then find something in the now that matters to you.
[00:08:00] A child's laughter over a new toy.
[00:08:03] Eye contact.
[00:08:05] A friend's voice on the phone.
[00:08:07] A cozy evening by a glowing tree.
[00:08:10] Even if it's just for five minutes.
[00:08:12] Let that be enough in that moment.
[00:08:15] I want you to know that every single one of us in the rare disease community is navigating uncharted territory.
[00:08:21] And there is no manual for how to celebrate the holidays when life feels so different than everyone else's.
[00:08:28] We're all just writing this script as we go, you know.
[00:08:30] Your story's unique and it's important.
[00:08:32] No matter how complicated, messy, or bittersweet this season feels, your family's path is valid and worthy of compassion.
[00:08:42] Especially from you.
[00:08:44] So here's a gentle reminder.
[00:08:46] If you do nothing else this holiday season, give yourself the gift of grace.
[00:08:51] Release the idea that you have to please everyone else or meet every expectation.
[00:08:58] Let the holiday look how it needs to look for your family.
[00:09:02] Let your emotions flow.
[00:09:04] Let your story be heard.
[00:09:06] Let yourself connect with others who understand.
[00:09:09] And know that in doing these things, you're honoring your journey, your child, and your own heart.
[00:09:16] As I've lived through my own experience and through my countless conversations with families,
[00:09:23] and through the incredible resilience I have witnessed in this community,
[00:09:28] this life may not be what you planned, but it's yours.
[00:09:33] And within it, there is room for love and meaning and oh so much joy.
[00:09:40] Especially when we let go and embrace what is.
[00:09:44] Take care of yourself.
[00:09:46] Take care of each other.
[00:09:48] I'm thinking of all of you this holiday season.
[00:09:52] And know that you are never alone.
[00:09:54] I hope you've been enjoying this podcast.
[00:09:57] If you like what you hear, please share this show with your people.
[00:10:01] And please make sure to rate and review it on iTunes or wherever you get your podcasts.
[00:10:06] You can also head over to Instagram, Facebook, and Twitter to connect with me and stay updated on the show.
[00:10:12] If you're interested in sharing your story, or if you have anything you would like to contribute,
[00:10:17] please submit it to my website at effieparks.com.
[00:10:20] Thank you so much for listening to the show and for supporting me along the way.
[00:10:24] I appreciate you all so much.
[00:10:26] I don't know what kind of day you're having, but if you need a little pick-me-up, Ford's got you.
[00:10:51] If you need a little more support system, I'll be sure.
[00:10:53] I appreciate you all so much.