Have you ever celebrated another child’s milestone while quietly wondering why your own child hasn’t reached it? Or caught yourself thinking, “Their kid can walk, talk, and eat - why do they think this is so hard?”
We don’t love admitting it. But maybe we could talk about it.
In this Effisode, I’m brainstorming about comparison in parenting our kids with disabilities, including my own moments of seeing other children with CTNNB1 syndrome reach milestones and wondering whether I missed something with Ford. I know how much I’ve poured into supporting him. And yet, sometimes that little voice still asks, “Did I do enough?”
I explore how comparison slips into guilt and shame, why it can hit harder when we’re tired or overwhelmed, and how it creates silence within the very communities we turn to for connection. Some families hesitate to share their hardest days. Others hold back their good news.
[00:00:03] [SPEAKER_00] 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_00] 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_01] 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.
[00:01:10] [SPEAKER_00] Hi there, and welcome to the show. This is Once Upon A Gene, and I'm your host, Effie Parks. I've been thinking about this topic for a while, and I've been wanting to have an episode about it, but it never quite sets. I've been thinking, who would I have on this episode? I can't figure it out. I can't figure it out because I want to talk about comparison.
[00:01:35] [SPEAKER_00] I want to talk about how we all have at least at one point compared our kids' level of severity or lack thereof to other people's kids. And it's not a comfortable topic. It's not something that we like to say out loud, but I guarantee you, you have done it. I know I have. I probably did it last week. I don't like to. I definitely practice not to.
[00:02:01] [SPEAKER_00] I know that we all come from different places inside and out in every possible way that helps influence how we react or respond or, you know, just anything. So, yeah, comparison. And then I was like, well, how would I pick the person? Because would I pick someone who has a kid that's maybe on the same wavelength as Ford? Would I pick someone who's maybe seemingly to someone else is not very affected?
[00:02:30] [SPEAKER_00] Would I choose someone who has, you know, a thousand seizures a week? Would I choose someone who has already lost their child to rare disease? Like, there's no way to really pick that person. And then I was like, okay, well, let me think about my deep thinkers. You know, the ones who I call for advice, the really, really rational, full of wisdom and storytelling. And nobody was coming to mind.
[00:03:00] [SPEAKER_00] And not because you're all not perfect for it. I just don't want to make anyone uncomfortable, I guess, except myself, because I'm the boss of me. So I'm doing it alone. And I'm really just kind of hashing through it. I would like to talk about this topic more because I think bringing light to things that are icky is really important. And it's really valuable.
[00:03:25] [SPEAKER_00] And maybe some of you are beating yourselves up right now over this topic. Maybe some of you are in a good place. I feel like for me, I've definitely sort of went up and down and up and down in thoughts of comparison. Sometimes with stretches for, you know, a year or two where I didn't feel like I compared anything at all.
[00:03:51] [SPEAKER_00] To then maybe almost every couple days I was activated by a social post or, you know, whatever it was. And it's weird. And I don't know. I feel like we should probably talk about it because this is not easy. And, yeah, it's not fun to admit. And we're human.
[00:04:16] [SPEAKER_00] So that's kind of where I'm going to begin this is there isn't any shame in thinking these things or calling our friends and complaining about someone's post about, you know, how life is so hard and whatever it is. And then you're like, but why? Why does she do that? Her kid can walk and talk and eat and has friends. Like, why do they think this is so hard for them?
[00:04:46] [SPEAKER_00] Like, you just you can go in those places. And I hope that if you are in one of those places that you do have that person that you can call and say those things to without feeling judged and get it out. I think that it's healthy to do that. Maybe it's to your spouse. I think that it's OK to have these. Yeah.
[00:05:12] [SPEAKER_00] I wouldn't say moments of weakness, but I think it does make us feel weak and a little powerless. And it takes it takes some of our hope lifeline away. Maybe sometimes sharing in that, you know, anguish with someone else lifts it a little.
[00:05:36] [SPEAKER_00] I think it's I think it's one of those things that definitely needs to be tendered carefully, tended to carefully because it could be a spiral. It could be it could be one of those toxic things. Right. That puts you in that hole and then turns you into a victim. So I think it's always really important to catch yourself and ask yourself questions about why you're asking about why you're so mad,
[00:06:04] [SPEAKER_00] about why you feel compelled to get it out, about whatever it is. Right. Is it helping you? Is it serving you? Is it's important to ask ourselves questions when we're going into a territory that might feel a little quick sandy. So that's always something to remember, especially in the chronic stress type of type of life that we lead. I don't know if you're following me. I hope you are. I'm kind of just like yammering on about this because I'm thinking I'm thinking through it.
[00:06:33] [SPEAKER_00] But I'll start with just me. Maybe maybe some of you can relate. I will I will go through our CT and MB1 Facebook group. Right. And I love seeing all of these beautiful children hitting milestones. And my heart really does swell. Like I love these children. And what's even more wild about the CT and MB1 kids, especially, is that they literally look the same.
[00:07:00] [SPEAKER_00] So when I'm looking at these kids, I'm seeing Ford in almost every single day visually of how he looked growing up. And it's wild. OK, like wild. If you don't know that about CT and MB1, you've got to go check out like our website and look at these kids' faces. They all look like Ford. But yeah, sometimes when I'm scrolling through, I feel I feel a little ache deep inside me.
[00:07:26] [SPEAKER_00] You know, like I feel like why is Ford the only kid in here? It seems like with a feeding tube or why is Ford the only one who is in a wheelchair completely full time and can't even use his gait trainer? Like why is it my kid that is seemingly having these symptoms that are more severe? Why does Ford have epilepsy? Why does Ford have this? And then I go, oh, it's because of you, Effie.
[00:07:57] [SPEAKER_00] Maybe you missed something. Maybe you didn't do enough therapy. Maybe you didn't do the right kind of therapy. Maybe you had a bad therapist. Maybe you were working too much and not paying enough attention to really getting him across the finish line before it was too late. You know, like that whole early intervention age. Like maybe you just didn't do the best job. Maybe you didn't give him enough supplements or whatever. You know, like that stuff can happen.
[00:08:27] [SPEAKER_00] And it sort of happens like in a flash. Like all of those thoughts can just imprint in my head at the exact same time. And it's just like this quick sort of moment. Especially if I'm tired or, you know, if it's late and I can't sleep. Or if I've had one too many difficult days in a row.
[00:08:52] [SPEAKER_00] So things like that can just sort of catch you a little more often and a little worse than others. And that comparison really shifts to guilt and then it shifts to shame. And then you're like, oh, this is horrible. I don't like feeling like this. I know the truth. I know what I did. I know how much time and money and work and blood, sweat and tears I've invested. And this is the way that it is. This is his genetics.
[00:09:20] [SPEAKER_00] Like you did everything in your power to get him to where he is. Okay? So like I know these things are true. And yet, it's hard as a human being sometimes to not have, you know, that I don't know if it's envy or jealousy or even if those are the right words. Or if it's just simply this like comparison nightmare.
[00:09:49] [SPEAKER_00] I don't like it. But, you know, I heard about this social comparison theory and I wonder if it aligns a little bit. And the theory says that we naturally look at others to figure out where we stand. Okay? Makes sense. And it helps us define what's normal. Okay? Not really totally there with rare disease, but how we measure up and what we should expect of ourselves.
[00:10:13] [SPEAKER_00] And in other words, comparing is literally built into how we as humans make sense of the world. And the tricky part is when you have a child with a rare disease or a disability and the range of what's normal gets super wide. And maybe you can't use the word normal. Some kids walk. Some kids talk. Some have hundreds of seizures a day. Some have none. Some can hear. Some can't. Some eat by mouth. Some are tube fed. Some are on ventilators.
[00:10:42] [SPEAKER_00] Some actually sleep through the night. And some families have not slept in years. And so because this range is so wide, gaping, comparison can quickly feel really unfair and really cruel or meaningless. But we still do it. Because our brains crave reassurance.
[00:11:08] [SPEAKER_00] And comparing maybe feels like a way to get it. But the real kicker, the really hard part about comparison is truly when it becomes guilt. It moves from just noticing differences to quietly blaming ourselves or others around us even. And there's always one person.
[00:11:37] [SPEAKER_00] You probably know someone like this, right? Who insists that their kid is doing great because they did just everything right. You know the ones. They've got the advice about the exercise and the supplements and the routines. And even though logically you know it's not that simple, there's always a whisper inside your head saying, Wait, should I have done that? I felt that. Maybe you felt it too. And it can really become this cycle of guilt. Like, did I work too much? Did I advocate enough?
[00:12:08] [SPEAKER_00] Did I choose the wrong school? Did I not push doctors enough? Did I miss a critical window? I mean, those things, they just come back over and over and over. It's like ruminating in a way, I suppose, over guilt and shame and comparison. And the thing about guilt is that all of those things actually, guilt, comparison, shame, is that it totally isolates us. People who are already isolated.
[00:12:37] [SPEAKER_00] People who know the depths of isolation. And it makes us doubt our instincts and our intuition. And it separates us from each other. And I would say that our instincts and our intuition are elite as rare disease parents. And how devastating for us to just poke holes in that also. I talk to a lot of families. And here's what I hear all the time.
[00:13:08] [SPEAKER_00] Families with severely affected kids sometimes feel like their truth is too much for others to handle. They stop posting updates because they're afraid their reality will depress or frighten others. This is especially true with parents whose children have died. With parents whose children have hundreds of seizures a day.
[00:13:34] [SPEAKER_00] With parents who maybe have kids who are more severely impacted in all the ways compared to the other kids in the group. Families with kids who are doing well also sometimes stop posting. Because they feel like their good news might seem insensitive or hurtful to families who are struggling more. Or whose kids aren't achieving those types of milestones and growth. So suddenly in a community built for connection.
[00:14:05] [SPEAKER_00] We have people silently hiding their truth good or bad. And then the isolation gets worse. That's heartbreaking. And that's not what we're here for. And we need to see both of those sides. And sometimes at different times in our life we need to see both of those sides.
[00:14:33] [SPEAKER_00] I think about back in the day when Brene Brown really came on the scene with her talk about vulnerability and shame. And I really, really respected that work that she did back in the day. And it really hits home. It hit home before I had Ford. And then it really hit home especially after I had Ford. And she says that comparison isn't just unhelpful.
[00:15:05] [SPEAKER_00] But that it's corrosive. And when I think about the word corrosive and comparison. Oof. Oof. It eats away at our joy. Our connection. And our ability to support one another. She talks about how comparison is rooted in shame. And that shame thrives in silence. Does that feel familiar to you?
[00:15:36] [SPEAKER_00] When we suddenly or silently measure our worth against someone else's. Or our kids against someone else's. We become more isolated and ashamed. And really just less like ourselves. Less authentic. And she also says that the antidote. Which I know we're always looking for. To shame in comparison is vulnerability. Which many of you know about telling your story.
[00:16:06] [SPEAKER_00] And sharing your story. And even just being open to consuming other people's stories. If that's what you can do at the time. It's telling the truth. Out loud. It's sharing our stories and feelings and fears openly. Even when it feels uncomfortable. When we stop pretending everything's fine. Even if we're not pretending things are fine. But we're saying they're fine. As to not be a burden.
[00:16:34] [SPEAKER_00] Or to even like accept it. Right? When we say hey sometimes I really struggle with comparison. We give other people permission to say. Oh my god. Me too. I would never say it out loud. Because it's just such a terrible thing to say about a beautiful child. And I know it's hard for everyone. But you feel less alone. And you feel less shameful about it.
[00:17:04] [SPEAKER_00] When you scoot it out into the light. So maybe instead of fighting comparison. Or beating ourselves up about it. We could just recognize it when it happens. When that uncomfortable feeling comes up. Maybe we're mad. Maybe we're just being you know annoying people. Maybe we're just gossiping. Who knows? There's so many ways this can come out.
[00:17:33] [SPEAKER_00] For whatever reason. But what if we ask ourselves questions? What's really bothering me right now? Is a good one. What am I feeling that I'm trying to avoid? By comparing. And then checking in with yourselves. Am I tired? Am I lonely? Am I worried about the future? Am I not taking care of my body?
[00:18:02] [SPEAKER_00] Like think about those questions. And maybe if we pause. Breathe. Breathe. Get an honest. Sense about what we need. We break the cycle. Before it turns into guilt or shame. And you know what? Whatever. Maybe you do need to call your friend. And be like. Ugh. So and so. So and so. So and so. You know what? Fine. If that's one of the levels. That you need to conquer. To get to the question phase. Or.
[00:18:32] [SPEAKER_00] You know. It's okay. Okay. As long as you're really not being a terrible person. Things like that. Are okay. So I. I wouldn't mind if we're all a little less silent about this. And maybe if we start talking a little more openly about it. We can all start to figure it out a little better. Like maybe actually admitting in our groups. Hey.
[00:19:00] [SPEAKER_00] Sometimes seeing your kids reach the milestones. Make me wonder if I miss something. But I still really want to celebrate with you. Or. I hesitate to share good news. Because I don't want to hurt others. But I also. Really need to celebrate my kid right now. I don't usually like. Disclaimers of any kind. Because I feel like it takes. Things away. And I don't feel. Like we owe.
[00:19:30] [SPEAKER_00] Stuff like that to people. And I'm not sure if this. Really aligns with that. I guess. Maybe that's a different thought. But. I would invite you. To. Maybe just. Talk about it. You know. The raw honesty. Could really heal some cracks. That comparison creates. And maybe it would invite others to be brave too. And to show up. As. Their authentic selves. Because I think.
[00:20:00] [SPEAKER_00] There is so much goodness and kindness in that. When they feel safe. Or understood. And. I think we all need a little more of that. And what I'm realizing more and more. Is that comparison. Is inevitable. Again. We're humans. We're parents. We're tired. We're hopeful. We're fearful. All at once. And. Comparison doesn't have to isolate. Us.
[00:20:29] [SPEAKER_00] But we can notice it. Name it. And choose connection anyway. We can make a conscious decision to celebrate. Everyone's truth. And not because it matches ours. But. Precisely because it doesn't. So. If comparison is just a part of being human. How can we turn it from something that isolates us. Into something.
[00:20:58] [SPEAKER_00] That deepens our empathy. Understanding. And love for each other instead. I'd love to hear your thoughts. Seriously. Take care. 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.
[00:21:27] [SPEAKER_00] 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 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.
[00:21:52] [SPEAKER_02] Flipping. Flipping.