Colorado Mama Tribe invited me out to talk about storytelling. What I found was even more than I had hoped for. They did it. They figured it out - at least some of it. And what hasn’t been solved yet already has bones.
That’s the falling into place. Not one perfect click. More like dominoes. One mama tells the truth. The next one doesn’t have to start from nothing. The piece that was missing finds the piece that was waiting, and suddenly the whole line can move.
Little bites from the women in that room, recorded and stitched together as a memento for them and a field guide for anyone who needs one. Think of it as a pocket bible of mama wisdom: the advice they wish they’d heard sooner, the lines they keep repeating to each other, the stuff that only lands when it comes from someone who’s lived it.
You’re not alone. A tribe can be built wherever you are. It takes work. It’s worth it.
Thank you, Colorado Mama Tribe, for letting me see what falling into place can look like for all of us.
[00:00:03] [SPEAKER_19] 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] [SPEAKER_19] 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] [SPEAKER_00] 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. 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.
[00:01:09] [SPEAKER_19] Hi there, and welcome to the show. This is Once Upon A Gene, and I'm your host, Effie Parks. And I have such a good, warm, fuzzy, emotional, beautiful episode for you today. Earlier this year, I was invited by one of the most amazing organizations in existence called the Colorado Mama Tribe. It's a group of moms who are raising kids with disabilities, and they have created something so unique and special and palpable and sparkly, and they're just awesome.
[00:01:37] [SPEAKER_19] I was invited there to talk about storytelling, which I love doing, and then they so graciously invited me to join in on some of their fun too, which was really special because I'm not from Colorado, and I got to see them just glowing and having fun and dancing and dreaming and just laughing and crying, and it was just really, really awesome what they've created.
[00:01:57] [SPEAKER_19] I hope industry gets their eye on them soon, because I would shout to the rooftops about what they've created and just the magic that they spread all the time with these women locally. And I'm so glad they have each other. Oh, man. So this is just quick little bites from each of them. I recorded just a couple statements from them, and I've looped it together, and I hope it becomes some sort of memento for them.
[00:02:21] [SPEAKER_19] But there's a lot of really good advice here. There's a lot of really, really just heartwarming thoughts and wisdom here. So I hope this makes you feel something. I hope you know you're not alone. And also know you can create a tribe wherever you're at if this really moved you. I'm sure they have a framework for it, which is a lot of work, but totally worth it. So thank you, Colorado Mama Tribe, for inviting me to experience the beauty that you've created. Please enjoy this episode.
[00:02:50] [SPEAKER_27] If I could talk to myself in the beginning of this journey, I would tell her, you know, you're doing great. You're doing amazing. You know, there's a lot that goes on with it. It's like that bumpy road that you have in a lifetime. You go down a dirt road for a very long time. It keeps getting bumpier and heavier. And eventually the road will smooth out to gravel, and then gravel comes asphalt. And then it's just a smooth sailing ride all the way through. So that's kind of how I look at it.
[00:03:17] [SPEAKER_27] If I were to tell myself that in the beginning of this journey, just letting her know that it's going to get hard, it's going to get bumpy, it's going to get rough. But eventually the ground will smooth itself out at the end.
[00:03:30] [SPEAKER_13] If I could talk to myself in the beginning of this journey, I would tell myself that he makes it.
[00:03:38] [SPEAKER_14] There was a long time where we thought he wouldn't, and that it gets easier. I was so deep in postpartum depression after I had my little one. I didn't want to get out, but we make it out. And he has a beautiful life. And community, like Colorado Mama Tribe, they gave me hope. I'm a single mom.
[00:04:05] [SPEAKER_14] And I have nobody outside of this community, even remotely gets it. So it's so important.
[00:04:12] [SPEAKER_21] Community gave me a lifeline. I was so scared. I was so lonely. I was so in the dark about what life after diagnosis was going to mean and how my life was going to look and how I was going to survive and find joy again.
[00:04:34] [SPEAKER_21] And community gave me friendships and advice and support and love during the ups, during all the many downs. And it was a way to survive the hard parts and celebrate the unique up times, the unique amazing successes that you can only understand if you're living this journey with kiddos that are on their own timelines,
[00:05:01] [SPEAKER_21] that have their own health issues and have their own inchstone successes versus milestones. It gave me a place to share that information, to share those stories and to feel celebrated and genuinely supported in a way that some people just don't know how because they haven't lived this journey.
[00:05:22] [SPEAKER_21] If I could talk to myself in the beginning of this journey, I would tell her to take a deep breath and that everything was going to be okay. I remember in my early journey not being able to eat. My husband would call my mom during the day and ask her if I had eaten and ask her if I had moved from the floor or from the bed because I was so distraught.
[00:05:51] [SPEAKER_21] And I had no idea what a beautiful life was coming ahead of me with my daughters after their diagnosis. I just couldn't put one foot in front of the other to take a breath and realize that while this was a really hard moment, while my world had turned 180 upside down, it was going to be the most beautiful life. And I was going to meet the most amazing people. And I was going to be part of such a wonderful community.
[00:06:19] [SPEAKER_21] And my perspective on the world was going to change in such an impactful way that someday I would look back on those moments of pain and be thankful that it happened exactly the way it did. And I would never change a moment because I wouldn't be the person I am today if it hadn't gone that way, if I hadn't lived that pain, if I hadn't learned what was so beautiful and so important in life.
[00:06:45] [SPEAKER_21] All the small moments, the things that you kind of forget to enjoy because you're moving through life so quickly. And when you're living in the world of diagnosis and so many ups and downs, you take every moment and you cherish it. And it becomes just a really amazing, beautiful life and a beautiful journey. And I'm so thankful for it. So yeah, I would have told myself, take a deep breath. It's going to be bumpy ride, but it sure is going to be fun.
[00:07:13] [SPEAKER_23] So the community has actually taught me a lot that we are all different and that diversity is not just something we see. It's something we live every day. Each person has their own life, their own story, their own struggles that we don't even see. But everyone walks in their own path and have their own experience.
[00:07:43] [SPEAKER_23] Speaking of walking, sometimes we walk together, sometimes we walk alone. What matters is we keep moving forward because life doesn't stop, time doesn't stop. So eventually, the stronger the community, the better. As with a strong community, we support each other by sharing advice, offer encouragement. So community is necessary.
[00:08:09] [SPEAKER_23] If I could back in the beginning, I would tell myself a message that I need to focus on myself. Focus on my path, on my roots, on my goals. Because I used to neglect myself and my needs. And I think my self-support is very necessary.
[00:08:33] [SPEAKER_23] Because when you build your own self, you became stronger and you help more and show up for more. Because I always say you can't pour into other while you are empty. And you can't water other grass while your grass is needed to be watered. So, yeah, the stronger I get, the stronger I could help others.
[00:09:02] [SPEAKER_24] If I could go back in time and tell myself something, I would say that it's going to be a hard journey. Nothing that I have expected. And there's not a way to change it, but there's a way to look for the positive. And that I will feel alone for a long time. But at the end, I will find support and lots of other moms that are doing the same things and are on the same journey.
[00:09:32] [SPEAKER_24] And there's a lot of love and hope and joy on this difficult road.
[00:09:40] [SPEAKER_26] If I could talk to myself in the beginning of this journey, I would tell her. Baby steps. Lead gently, but with purpose. Let each step ask something of you. How does it serve me? Is it worth another? If not, pivot and move forward. Only forward. Meet every misstep with forgiveness. Listen for the lesson it carried. Thank it. The steps you take are never wasted. Then pivot.
[00:10:10] [SPEAKER_26] Move forward. Only forward. And if you should fall, and fall you will. Get up, darling. What'd you learn? Now dust yourself off. Remember who the fuck you are. Then pivot. And move forward. Only forward. Stand in confidence. Carry your wherewithal. Carry your people. Find new people. Open your heart and listen. Really listen. Believe in your mission. Be steadfast. Be you. Be Corey.
[00:10:39] [SPEAKER_26] You are good. You are so, so good. And move forward. Only forward.
[00:10:45] [SPEAKER_22] I would say community gave me hope. The first special needs community we were involved with was Hope Kids, and that was their big push, was hope for families that didn't have hope. But I would also say community is more than your special needs child. You need to have a community outside of the special needs community so that you don't lose yourself. Like if you like singing, or if you like art, or whatever your interests are, make sure that you don't lose that.
[00:11:14] [SPEAKER_22] And have that community as well. If I could talk to myself, I would say that everything works out. Because you can't really tell yourself that your child gets better, but everything works out. And everything falls into place. It's actually one of my favorite ideas that they had for this retreat. But you are where you're supposed to be when you're supposed to be there.
[00:11:41] [SPEAKER_22] And that all comes together as they go through growing up.
[00:11:47] [SPEAKER_15] Community gave me a sense of appreciation. One, of me being appreciative of other moms and their journeys and their experiences. But also, I don't work anymore. Marriage is hard. We've had issues. I'm not getting appreciation at home for being a mom. And so being a part of this community and like, I don't know, diving in with both feet. I feel appreciated. I feel like there's a space for me. I feel like I'm being told that I'm doing a good job.
[00:12:17] [SPEAKER_15] Which is so minimal, but so, like anytime I get a thank you text or a, hey, how are you doing? I like, I get shivers. And it's filling a need that I don't, like I don't have it right now. I think that's the biggest thing that this community has given me. And then if I could talk to myself in the beginning of my journey, I would just reaffirm that you're not alone.
[00:12:42] [SPEAKER_15] You're not the first person that has been there, experienced that, done that. And that doesn't lessen your own experience. That helped me come out so much stronger on the other side. Mental health wise, all the things. Just being open and honest and vulnerable. I wouldn't change that again. And I'm usually not a, I'm an introvert. I don't just share. I don't like to confront.
[00:13:11] [SPEAKER_15] I don't like to do that. But we, in the NICU, we had a CaringBridge page to update everybody. And that just, it was almost like a journal. Or, hey, we're sending out this update. And it just, yeah, I would say, like, you've got this. Share your story from the beginning. It helps to know that you're not alone. And you don't know you're a part of a club until you're in it. I met so many other NICU moms that said, I didn't know that they had a NICU kiddo.
[00:13:41] [SPEAKER_15] Hey, my kiddo was in the NICU. Oh, my son also had this diagnosis. Or sharing, you don't know what you have in common with someone unless you're open to sharing it.
[00:13:53] [SPEAKER_16] Community gave me a set of friends that are able to come and just be with us at our house. That we don't have to go out and do giant family activities together. They're able to just come and hang out with us, knowing that we can't, you know, get out and do all those fun things all the time. But the beauty of it is that we have so much fun just being together. They're like in the house, you know.
[00:14:22] [SPEAKER_16] And they just love my kids so much. They love both my kids, but my elephant kiddo, you know. They just are not scared by him. They're not intimidated. And they just embrace him and love him for everything that he is. If I could tell myself in the beginning of this journey, oh, man. Well, I would tell myself that it is a journey, for one, and that it's going to change a lot. And it's just going to take time.
[00:14:52] [SPEAKER_16] And things are going to shift and move. And, you know, my son has profound autism. And, you know, when he's first diagnosed, you think, okay, there's a lot of variation there, you know. But if I could go back and tell myself, like, all right, you're going to have to buckle up. And you're going to have to really, really advocate and just be ready for the twists and turns and the physical moving of states and just putting it all, putting, you know, all your cards out there, like, all in on this.
[00:15:21] [SPEAKER_16] So, but yeah. I think I'm there now. But I didn't know then that it was going to be quite like this.
[00:15:28] [SPEAKER_18] Community gave me a sense of belonging, a sense of understanding, a sense of you're not alone in this, that there are other people going through very similar journeys that keep you uplifted, keep you strong, keep you going. They listen. They understand. They don't question your worries. They don't question why you're upset.
[00:15:58] [SPEAKER_18] And they're your support system for life. If I could talk to myself in the beginning of this journey, I would tell her that you will get answers. It might take a lot of advocacy. It might take a lot of really annoying conversations to get to the answers, but you will get some answers. It just might take time.
[00:16:26] [SPEAKER_18] You are stronger than you think. Your child is stronger than you think. They have so much to offer the world outside of their diagnosis. You can learn so much from them. I have learned patience, unlike anything I thought was even possible, inside of my body. I've learned how to be more grateful for every single thing in life.
[00:16:57] [SPEAKER_18] You learn to laugh at the silliest things in life. Like, my son peed on the floor after vomiting all night while I was trying to go to the bathroom for two seconds. And when I saw that pee coming out, I just laughed. Because what else can you do but laugh? And you'll get through those hard moments. But you have to lean on those people around you and that community.
[00:17:25] [SPEAKER_28] If I could talk to myself in the beginning of this journey, I would tell her to be her mom first. There's going to be a lot of roles that you're going to take on. A nurse, a therapist, a teacher, an advocate, a play friend, a translator. And in the end, in all of those moments, she needs a mom. Be her mom first.
[00:17:54] [SPEAKER_28] And in every choice you make, remember that all of the therapies and all the medical is great, but she needs her mom. Community gave me breath. Gave me oxygen. Because before meeting specifically this community, Colorado Mama Tribe, I was so alone. And I was white-knuckling so much on my own. And I was holding my breath.
[00:18:24] [SPEAKER_28] And I'd hear every day from the hospital or from my parents or from my husband or from neighbors, Oh my gosh, you're so amazing. I don't know how you do it. Oh my gosh, you're so amazing. Da-da-da-da-da. And inside, I was drowning and I could not breathe. And I came here and I could breathe. And because of that, I have been able to move through things that I think I would not have been able to move through
[00:18:52] [SPEAKER_28] if I didn't have somebody to just be the breath in my lungs and the wind in my sails when I have felt very deflated.
[00:19:01] [SPEAKER_11] If I could talk to myself in the beginning of this journey, I would tell myself to trust my instincts, to know that I'm strong enough and that I was made to be exactly what I needed to be in this journey. And I would just say you will shock yourself
[00:19:30] [SPEAKER_11] in the best possible way and just know that and that I love you. And community gave me a feeling of belonging. In my life, I did not ever feel like I belonged in a lot of different spaces I should have. And the first time that I entered into this community, there were so many signs
[00:19:59] [SPEAKER_11] that I was supposed to be here, just me for who I am and that I was going to be an integral part of this community.
[00:20:11] [SPEAKER_03] Community gave me the most beautiful group of women and men that surrounded my husband and I in the most unique ways. We lost our son and they showed up in ways that I couldn't even begin to describe. And that's what this community has given me. If I could talk to my younger self in the beginning of this journey, I would tell her every second of it is worth it.
[00:20:41] [SPEAKER_03] Every second. And I would do it all over again, even knowing the outcomes.
[00:20:48] [SPEAKER_12] Community gave me strength, love, courage, and education. If I could talk to myself in the beginning of this journey, I would tell myself that I'm stronger than I think that I am and that I am capable of really, really, really hard things. things. And I would also tell myself to make sure that I give myself
[00:21:17] [SPEAKER_12] grace and also to continue to love myself and show myself compassion.
[00:21:22] [SPEAKER_06] Community gave me a place to fall back when I felt like I had nowhere to turn and nowhere to go. And it gave me a place to share my voice and know that other people can empathize with what I've been going through. And if I could tell myself in the beginning of this journey anything, I would tell myself to take it one day at a time and that even though everything is scary, it's also beautiful. And I'm just thankful
[00:21:52] [SPEAKER_06] and blessed to be his mom. Community gave me
[00:21:57] [SPEAKER_02] other people who are going through the same thing, whether it's going through the trauma of diagnosis or trying to figure out how to do things and how to live a life and do the things we want to do with our child as a family. Practically advice from other moms on how to do that equipment used, tips and techniques, what to do when things don't go well, how to handle people who are judging you or staring at you or making
[00:22:26] [SPEAKER_02] unkind comments. That's what community has given me, the tools to deal with those things. If I could talk to myself in the beginning of this journey I would tell her, you're very young and you have a lot to learn and things are not going to look at all like you thought they would.
[00:22:48] [SPEAKER_09] Community gave me a place to be more authentically and deeply myself. Just having a community of women and people that have walked through the if you know you know just makes a big difference and how they can show up and support you and how you can show up and support them. And I would say if I could talk to myself in the beginning especially of our journey
[00:23:17] [SPEAKER_09] a lot of times you get things that feel very heavy or your situation feels very heavy and I wish I knew sooner that you're not meant to feel that weight alone. you're meant to share it and be in community and have your team also help you share in holding that weight.
[00:23:44] [SPEAKER_20] Community gave me a sense of belonging almost like coming home to people who know exactly the emotions and the feeling and that I've experienced and I have the most amazing friends but they've always been so supportive of Mama Tribe because they are very honest in saying that they don't know this journey. So I finally found my people.
[00:24:14] [SPEAKER_20] If I could go back to my younger self I would say you are fucking stronger than you ever imagine and be proud of her and everything she's gone through.
[00:24:34] [SPEAKER_05] If I could tell myself at the beginning of this journey I would tell her that leaning in and accepting help is everything that you need to do. I have a lot of friends that are at the beginning of this journey and I'm watching them try to navigate it all by themselves and I went to one event and found my community immediately. So lean in and accept the help.
[00:25:01] [SPEAKER_04] Community gave me I would phrase it more like I did not know how helpful community would be. Just knowing that other people are going through the same things is kind of enough. Just not feeling alone is kind of enough and talking to people that understand your journey is enough and if I could talk to my younger self at the beginning of this journey I would tell her to have
[00:25:30] [SPEAKER_04] faith that your child will surprise you in ways you never imagined possible.
[00:25:37] [SPEAKER_07] Community gave me lots of support from lots of different people new and old. Oftentimes not even somebody that was a family member so grateful for my community and my built community and then if I could go back in the beginning of this journey I would tell her to be patient and take it easy on yourself. It's okay if you don't always have
[00:26:07] [SPEAKER_07] the answers to everything and more importantly treasure every minute
[00:26:11] [SPEAKER_08] good or bad. I've been very fortunate to have community from kind of the beginning in NICU. Very early on we spent five months in NICU and I actually became friends with a lot of people in the NICU and I became the NICU mom for a lot of people a lot of younger people in the NICU and I still have some very good friends from the NICU that I see yearly and we always go
[00:26:41] [SPEAKER_08] back and visit because I was in the NICU for five months before I ended up transferring back to Denver from Canada where I was visiting my family when I went into labor early and I had that community and then later on I moved to Texas and I was part of multiple moms groups there that really helped me learn a lot about different topics and help me in my
[00:27:11] [SPEAKER_08] journey because I was a disaster and then moving from Texas to Colorado and finding the mama tribe I also do stuff with labeled and love I just think different community is really good and not even just staying with one particular community because I think the experiences are so different and they're very helpful to learn about just different perspectives from all over the country and what people are going through and
[00:27:41] [SPEAKER_08] helpful in my situation so thank you
[00:27:44] [SPEAKER_15] community gave me a sense of appreciation one to like of me being appreciative of other moms and their journeys and their experiences but also I don't work anymore marriage is hard we've had issues I'm not getting appreciation at home for being a mom and so being a part of this community and like I don't know diving in with both feet I feel appreciated I feel like there's a space for me I
[00:28:14] [SPEAKER_15] feel like I'm being told that I'm doing a good job which is so minimal but so like anytime I get a thank you text or a hey how are you doing I like I get shivers and it's it's filling a need that I don't have right now I think that's the biggest thing that this community has given me if I could talk to myself in the beginning of my journey I would just reaffirm that you're not alone
[00:28:43] [SPEAKER_15] you're not the first person that has been there experienced that done that and that doesn't lessen your own experience but I don't know that I would change anything I was very open about my experience from the beginning and I think that helped me come out so much stronger on the other side mental health wise all the
[00:29:12] [SPEAKER_15] things just being open and honest and vulnerable I wouldn't change that again and I'm usually not a person that seeks I'm an introvert I don't I don't like to share I don't like to confront I don't like to do that but we like in the NICU we had a caring bridge page to update everybody and that just it was almost like a journal or hey we're sending out this update and
[00:29:41] [SPEAKER_15] yeah I would say like you've got this share your story from the beginning it helps to know that you're not alone and you don't know you're a part of a club until you're in it I met so many other NICU moms that said hey like I didn't know that they had a NICU kiddo hey my kiddo was in the NICU oh my son also like had this diagnosis or just yeah sharing you don't know what
[00:30:11] [SPEAKER_15] you have in common with
[00:30:11] [SPEAKER_17] someone unless you're open to sharing it if I could go back to myself at the beginning of this journey I would tell her that it's okay to share my story outside of the special needs community I think I became more comfortable being vulnerable with other people that I knew were already like kind of living this life but for just typical people that I would meet it took me a really long time to be vulnerable and talk to them
[00:30:40] [SPEAKER_17] about my life and I've learned to be more open and it's just created some really beautiful connections and so many me too stories that I would have completely missed if I didn't learn to be more open and I think my kids like when they were born we didn't know they like we didn't have an in utero diagnosis or anything so things kind of trickled and
[00:31:10] [SPEAKER_17] so part of that was like our future we just didn't know what it looked like so we didn't know what to share but if I were to go back I would just be way more vulnerable from the beginning and not needing a road map to feel comfortable
[00:31:23] [SPEAKER_10] sharing if I could go back to the moment that my son got or I got the diagnosis for my son like what I would tell myself is that it is okay to reach out for and to ask for help that is something that has never come easy for me and I think it would have helped me tremendously to ask for help and to know that it's not a weakness to ask for help and
[00:31:53] [SPEAKER_10] to know that some people aren't going to show up and that's okay and when those people don't show up they are in some ways showing you that they are not in your corner and that is fine you don't need them you're going to find other people who are strong like yourself who will be there to support you and those people will show up for you and you will show up for them and there's so much in this that you will you will grow and you
[00:32:23] [SPEAKER_10] will blossom and life will be better than you ever imagined
[00:32:29] [SPEAKER_25] community gave me friendship a sense of belonging and a group of women who also are along similar journeys who get it and if I could talk to myself in the beginning of this journey I would tell her it is all worth it it's amazing and it's a blessing amen
[00:32:48] [SPEAKER_19] I hope you've been enjoying this podcast if you like what you hear please share this show with your people and please make sure to rate and review it on iTunes or wherever you get your podcasts you can also head over to Instagram Facebook and Twitter to connect with me and stay updated on the show if you're interested in sharing your story or if you have anything you would like to contribute please submit it to my website at effieparks.com thank you so much for listening to the show and for supporting me along
[00:33:18] [SPEAKER_19] the way I appreciate you all so much I don't know what kind of day you're having but if you need a little pick-me-up Ford's got you