Linked Together

How Did We Get Here

National Genetics Education and Family Support Center Season 1 Episode 10

Join us as we wrap up season one. One of the most frequent questions that we are often asked is, how did you get into this field. We share how we get started and where we see ourselves going from here. 

Welcome to Linked Together a family center program. I'm so excited to have you along as we share our stories As we wrap up season one. Let's talk about how we got to this point. One of the most frequent questions I'm asked is, how did you get into this field So really, it's my turn to ask you all, how did you get started? You don't know that. Honestly, my first response was, I'm not even sure, to be quite honest. Like it's been a twisty journey. I'm not sure how I ended up here. I think honestly, if I had to sum it up, I said yes more than I said no. I was open to opportunities I spoke up, I said my truth in meetings. And so I brought my authentic self to things. And I feel that that was I was lucky to be around people who were receptive to that. And so I think those offered me opportunities. Yeah, that's me in a nutshell, too. Probably like everybody up here, I think I started with a goal to... For one thing, specifically for Elijah. And then that just grew into more and more opportunity. But I think it really was just walking into those spaces authentically me, you know, not trying to cover up whatever I may have been feeling at the time, not trying to hide my frustrations about our experiences and the different things, but really to embracing the goal of advocacy that I wanted to push. And so I think people saw my passion and people saw value and the different resources and, and information and. And I'm educated. I think that's always a plus, depending on some situations. I think people saw those characteristics and wanted to offer me a seat at their table. So some some tables, I had to take my own chair you know. You know, some tables I had to create and and invite people to come sit in. But but I think it is just walking into spaces authentically you, you know, not trying to mask all the different things that you have going on. I would agree definitely for me. But I also want to add to that for me personally, I struggled with my own self-confidence and my knowledge. So it was a lot of walking into uncomfortable spaces and trying to be OK with that. So that was a process. And I still have a lot of uncomfortable moments, but I know how to power through them and I know that what I have is worthy of sharing. And so I think that that would be another thing that got me through is just being able to understand my weaknesses and my strengths and being OK, giving myself some grace when I didn't know what I was talking about and needed a lot to learn there. Which I still do. That's from me to meet you every day. Oh, well, and for me, you know, I had mentioned it previously. I started out as a special educator. It was my it was my desire to be in that world, in the education world, but also touching the lives of families who had kids with disability and then the tables were turned and I was that parent. So the journey was long and actually having different opportunities to say yes to Molly and doing it. And there was some selfishness involved for me because those opportunities helped me learn the the next steps that were coming from my children and how to plan. So I was utilizing it as a way of me learning, but also giving back and sharing what I knew. But and it just kept growing. And and eventually we were presenting at conferences, me alone, sometimes with my kids and saying yes to those opportunities, even to present at national conferences. And then when they were all grown and I thought, OK, now what? And serendipity knocked at the door. And my boss had happened to see me speaking up at a presentation and came up to me and said, Have you ever thought about moving back into the workforce? And and here I am. I'm now I'm working as a family leader. Yeah. Yeah. So what advice do you have for those who are just starting out or are they kind of maybe they'll catch an episode of this and be like, you know what? I've got this passion in this drive, and I want to do that. You know, they're like, But I have no idea where to go. I have no idea. Who did you say yes to? Where? Who did you talk to? Who asked you those questions or gave you those opportunities? Sometimes it does feel serendipitous, like you said, Linda, where it just you just happened to be in the right place at the right time. Sometimes it was stepping out of your comfort zone, right, Marisol? And like saying, hey, I'm here and I'd like to do this right But, yeah, I was wondering, do any of you have any advice for that, that parent that's looking maybe to kind of dip their toe, so to speak, in this in this pool. For me, and I even have this in the mentoring that I'm now doing. That's the question is, you know, how did you get on this board? How did you get to this point? And part of it is those serendipity moments. But also putting forward that I'm interested and letting people know I've got a little bit of time I've got some interest areas. Do you have a recommendation? Where where might I go to learn more and and do some more, whether it's volunteer or not, and just start asking those questions and doing the networking to get there. And I've even approached boards and said"I'm interested if there's a process, please, I would like to be considered" and been bold and forward. Bold. Yeah. I think. But I think you're spot on. I think I think you have to be I think because a lot of times especially if you're new in the space, people aren't going to know about you. You know, people aren't you you may not get the the invite or the ask, but it is simply a lot of times because people don't know you exist. Right. And so I think it is important to build those connections and build those relationships and and maybe start at your local space and reach out to local organizations and, you know, whatever your drive is and say just that. Do you have something that I may could could fill a void for your organization? I think is just I think is really important to to know a little bit, you know, what you're trying to to to bring to the organization, know a little bit about the organization to make sure that it's a good fit for what you're thinking it is you want to do. Because you may not have all that meshed out just yet. But I think I think it is important to build relationships and reach out if nobody's reaching out to you but you have that drive because, you know, it's not for everybody to create a foundation and start a foundation and start, you know, play dates and support groups. That's not everybody's thing. You know, it may be as simple as connecting with someone and filling a void that they may have. And so I think I think it does start with knowing just a little bit about what your goals are and wanting to be in the role and then finding organizations that will be willing to let you be a part. Yeah, I. Don't worry about not having education. You know, I, I mentioned I was educated personally for me because some of the rooms that I've been in that was important to those folks, you know what I mean? And, and so sometimes but but I wouldn't let not, not I wouldn't let limited education stop me from wanting to be a part, right? Mm hmm. Yeah. And there was something you just said that I was like. Yes, because. Oh, I know what it was. It was when you talked about like, not everybody has to start a support group. And so I always when I talk to individuals who want to be family leaders, I say, you don't have to quit your job, change your career, or do any of all of that. I mean, again, that was what my passion was and where that drove me. If you want to just make those small changes and you want to, again, maybe participate in a board and have your voice heard, or every once in a while legislation comes up and you know what? You even just want to tell your family story and send it in. That's important for you. Make that one call to that legislator, right? Like that. That's family leadership. That's leadership at its very heart. So it isn't all about, you know, again, leaving everything that you enjoy to come do this. We're not saying that. But yeah, there's opportunities there and it is that I love talking to individuals. I always say everybody I meet, give me a call. We'll talk it through. I may not know of anything, but as long as you let me know you're interested in stuff, you'll get on my email list or my whatever I'm sending out. And when I have opportunities come across my desk, I send them out and I believe in this work that when you win, we all win. Right. Right. It's it is it goes back to it's not a competition. And if you succeed at your goals, I feel good about that. Even if they're not my goals, right? Like it's not about me. It's about you and you finding your journey in this. So that's right. That's a huge takeaway. It really is. It's about celebrating the other person, right? Like, yes, it's about I have had those same thoughts, kind of like when Linda was saying, that's selfish ambition, you know, oh, they've asked me to serve. That's an opportunity for me to learn something. So it's an automatic. It's like, yeah, an opportunity to build a relationship there. But but even in doing that is still the overall goal is to celebrate someone else. And so I think I think if we all live like that, it's about our brother, it's about our sister, it's about our neighbor. So we will we will be so much better off. To celebrate and to lift. I think that's what makes us leaders, too, is that we want to lift other people. We want to create we're not going to be here forever. Yeah. And we have children who are going to be born tomorrow who have needs. We have families, so many families who have needs. So creating leadership that can then take over in early intervention and, you know, in medical aspects. Then we need to pass the baton, we need to grow family leaders. And I think that's what makes us family leaders. So I love that love what you said, but what I would like to leave for families I think would be just ask your question. If you have you want to be involved and you don't even know where you want to be involved, you just know you want to be involved. Just ask. Make those connections, talk to people, find out what their experiences are and who are they connected to. Because I think the networking is what's going to create that opportunity is going to what's going to open doors for you. That's how it's opened doors for me. Just talking to people, telling them what I was doing, what I wanted to be doing. I didn't ask to be in early intervention. I didn't ask to be, you know, in a parent of two children with disabilities. But I haven't been afraid to say, I don't know what I'm talking about. I don't know what I'm doing, but I know I need to know. So I'm going to go look for that information. I'm going to go seeking it. I don't care if I have to go online or if I have to go knocking on people's door. So then that's kind of... In that same regard, being able to say, you know, I have no idea, but I know someone who does and let me connect you with that person. Because that's a you know, I've even done that sometimes. I've sought that information because I felt like, oh, that's something I need to know. But sometimes when you know, because you don't want to just keep you don't want to reinvent something that you know is there and it's working if it's working. All right. But so but in that same instance, just doing that exact same thing, you know what that is? I know exactly what you need. I know who you need and connecting them with that person too. So that it's kind of that offer. And that's what I've done too, is made the offer at physicians offices with all these different physicians that we've known and the nurses that we've worked with. I've always offered and said, if you have a family that they need to have a conversation. I'm always open for that. Please connect them and making making sure that that was known. And then also in other circles at conferences, trying to make myself available and offering that. I don't have all the answers. I really don't. But I might have an idea or a connection. So just being willing to make those offers and and soon then people were coming to say, you know what, I want to offer suggestion to you. And that's how I found Molly. I was, it was suggested that I get in touch with Molly. And so look where we are today. Right? Yeah, but and I mean even from people to program and you know, we were looking to create a new program um, and, and newborn screening education is something that we wanted to implement into our one of our programs. And I saw where Expecting Health was all they already had something developed. But in addition to that, they had a partnership opportunity and so I was able to just reach out and say, you know, I'd like to know more about your partnership opportunity for this program. And now today we are a partner of that program, and that's the program that we offer through our foundation. So for me, it's just it's not about trying to just start something over. It really is about building connections and relationships and, and being willing to collaborate and, you know, walk away from the oh, it was me and I did it because it's not about that, you know, and, and that was one thing that I realized. It doesn't matter to me if I get the recognition or the praise. That's because that's not why I'm here. I do accept whatever award that comes up yeah. Just letting you know. I will graciously accept and have, but but even in that, I was shocked that someone thought that I deserved not not that I felt unwilling or undeserving. It was just one of those man, I wasn't here for that. Right. And so and so I think that that's just what it's about. It's about just making sure families have what they need. Absolutely. Oh, well, it's hard to believe we've gone through one whole season of this. We've shed some tears, we've had some laughs. We've had a really great time I've loved the connections we've made, the stories we've told. So I'm going to give you an opportunity, I guess, to... any last words, any last words of wisdom, anything you'd like people to know before before we're done and know that this isn't the end of our stories. Right? I feel like it's just the beginning and we'll see where we go. Um. So does anybody have any last? I don't just be encouraged. Be authentic. Yeah. Be authentic. Yeah. We've covered so much territory. I would just say, if you didn't hear some of the other episodes, tune in to the other ones. I think there's something in every one of these conversations and then take it forward for you and for somebody else as well. Yes. Yeah, absolutely. And again, if you don't have your connections, if you don't have your people, just keep looking. They're out there. We're here. Yep. Again, we know that everybody can give us a call, send us an email. I know those sometimes are the scariest ones. Like, I don't even know what I want to ask or where I want to start the conversation, but I know that leaders come in all different shapes, all different forms. There's quiet leaders. There's like I said, there's behind the scenes leaders. There's those up there on podium who's making big speeches, but you find your spot, make a change. So I just want to thank you ladies again for being part of this part of these discussions, sharing with me, sharing with those who have come along with us and listened or watched. It's it's been a unreal experience. And I hope you felt the same. So thank you so much and thank you for coming along with us on this journey. We look forward to season two and we hope you do as well. The great conversations that we had today is supported by the Health Resources and Services Administration of the US Department of Health and Human Services as part of the work of the National Genetics, Education and Family Support Program. The contents are those of the participants and do not necessarily represent the official views of nor an endorsement by HRSA, HHS, or the US government.