Why We Do This Work

We are glad that you can join us as we discuss why we do this work. Why we continue to support other families as we work toward system change. Why each of us shows up each day even though the work is hard and hearing other struggles brings up some of our own. 

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Welcome to Linked Together a family center program. I'm so excited to have you along. As we share our stories Welcome. I'm so glad that you can join us today as we discuss why we do this work, why we continue to support other families as we work toward system change. It's the why each of us shows up each day. So this work is hard. Hearing other struggles brings up some of our own. Sometimes we are struggling with something At the same time, we're trying to help others. So why do you do it? Why do you continue to come here? Show up. I've been doing it a long time. Yeah, and it was informally and then from a volunteer fashion. But I've always been a doer. I've always been a part of being involved in volunteerism. And so just because I had two kids with a lot of needs going on at home, it actually compelled me to do even more. So serving on boards and with committees to try to improve things just in our own community at first. And then it grew from there. That's just part of who I am. And it just made sense that I'm doing it to advocate for my children and for the children in our neighborhood. And in our schools and community. And now I'm able to do it at the state and national level. But it's just it's who I've always been. And I would never not want to be doing this in some way, shape or form. Mm hmm. And I've always considered myself a helper. So I feel like I've been called to help other families. And it was a difficult process for me. Lots of ups and downs and along the way, learning little bits and pieces as I go. And so I know I still have a ways to go. My children are still young, but I feel like my job now is to really help other families understand how to navigate early intervention, how to navigate health care systems or education systems. My why started initially for my children, it was all about my children, and that was my focus. But once I started to realize I had some information that other families needed and they weren't getting it, I knew they weren't getting because I had to struggle to get it. Mm hmm. Then it was my job to inform them to provide that because I'm a helper. So I think I really believe I'm I'm a leader. And I don't mean that in any sense other than that, like, I don't mean it arrogantly or anything. I just I feel like I feel like that's a gift that I have been given to lead is something that I feel confident and I feel I feel sure when I'm doing it. And and with with Elijah, which is my why... I felt like I felt like I wasn't leading his his story. I felt like I wasn't leading what he needed. I was not in control of of what I knew was best for him. I felt like it was being withheld from me. So the leader in me wanted to figure out how do I make this different? How do I how do I fix it? Right. Like the there's a problem I need to figure out a solution. And like Marisol just said, I realized that if we were experiencing it, other families must be, too. And so my why started with Elijah, and then it trans... It transitioned into we're making sure Elijah gets what he needs How can I help other families get what they need for their children? So it just it just continue to grow. But but I think it was just that the the sense of feeling like I wasn't in control of of of being able to receive what I needed for him. Yeah. Yeah. Yeah, that's good. And for me, I think about it, and I think my why has changed over the years. Like, it really has it. It started, and I honestly, I don't even know the why. Like, I feel like because I think it was so accidental. Some of that, like, how I this path that how I ended up here was, again, just very different than what I ever thought or imagined. So when I think about that, like, at the beginning, I think someone wanted my opinion on something and asked me to sit on an advisory board. Right. So that was I'm like, oh, sure, I can do that a little bit. And then again, as I learned more and saw more and met more people, I just... it has changed. And for me, a lot of it really is about those connections. So not only is it that system change, right? But to me it's about those connections I make with people. And that's what helps me get through this. Yeah. Yeah. I think mine was actually the opposite. Like, I wasn't asked to sit on a board or anything. All of that came. After. I got started. Right. Like, when we started the foundation. And I think I think people see your passion looking for the information for yourself. And again, like you said, how can I share that information with other folks? And and that's when people started to ask me, can you serve over here? Can you be a part of this? Can you help us on this project? Because it was just I don't know. It was something about being told that you can't have access to something that you know you need... That makes you want to fight even harder to get that access. I think that's such a good point, Sarita And I think that's similar to my case, too. I you know, I never considered myself a leader. I didn't see those qualities in me. But other people have. They've seen the passion. I think that's what it is. They've seen the passion and the genuineness that I bring to it. This is meaningful to me in so many ways. And that's what's gotten me into it, because I had my son. He was three when I was told, hey, you need to apply for this. And I got the job. I was going to stay at home. But let's see how this works out. I was I said I'd give it six months and I'm still there. You know. Yeah. So but it is hard, right? So when we do hear family stories or we do hear somebody going through something that, you know, again, Linda and I've been here a little bit longer, but that I feel like I worked on 15 years ago and went, are you serious? Like people are still dealing with that. Like or you hear how somebody is fighting with their insurance company and you just think, gosh, I remember when we did that. And so it brings up some of those memories. Right. And so I... it is hard. And so have you ever thought about not doing it, or it to me because it's an endless you can keep giving. So I'll give you guys an example. I remember I did have to step back at one point when my kids were a little bit smaller because in the moment, like my moment of clarity around that was I remember being on the phone talking to another parent about their child's IEP, trying to help them facilitate their child's stuff and having to hang up because I was late for my own kid's IEP who I hadn't even read at that point, you know, as I'm like rushing to go to it because I just hadn't got to it. So it was almost like my own family at that point had sort of come back because again, when the calls come in or someone says, Hey, can you help me? It is hard sometimes to set those boundaries because again, I do feel like we're givers or we want to help people, and that's why we're where we're at. But but sometimes it is that boundaries right? It is. I know for me, I. You want to say yes. Yes! and I'm sure like all of you, you get a lot of asks. But the one thing that I tell myself is just because I'm good at something doesn't mean I have to say yes to a project. Even if I feel, man, I'd knock that out the park sometimes, you know, it's just not the right time. And I think I think that's something that we have to be conscious of. And we have to be intentional in the things that we do accept. Like, why am I accepting this project or why am I always available? Or, you know, why am I trying to be the problem solver? Right. Like, is it is is there because because sometimes it gets to a place of I just know we need to get this done, and I feel like I'm the person to do it versus I'm just really trying to help this family. And so I think you have to really identify the purpose behind the"yes's" that you give. I have not been in it as long as you guys. So. So the only burnout that I have felt is just a lot of times it's the overwhelm of trying to find the answers and you feel like, OK, I just need a second. But I have not felt that pressure of you know, stretching myself too far. I think I just maybe I just haven't been there long enough For me, I'm still in the place of recognizing I can't do I can't do all of this right now, you know, like I have to step back. Yeah. And I think you might maybe you don't get there because, like, to me, that was very astute when you said that. Like, I know I don't have to say yes to everything. And again, when I started out, I was a lot younger maybe knew myself less. I didn't really realize that. Right. Good opportunities would come, and I'd want to do them. I'd want to be part of all of that. So I did think some of it for me was maturity, understanding, knowing my own limits. And and that was just part of it. Yeah, that's part of it. And I will say, too, is learning when to say goodbye to something. So, you know, all through the years, I was definitely the yes person. I mean, I as goofy is it might sound to some people, but this is my calling and this is my purpose. I decided when I was 16 I wanted to be a special educator that was my first career. And then it turned out I had two kids who had many needs in the world of health care and in education. And so I just felt like this was my place and purpose. But at the same time, as I've evolved and they grew up and I was growing with them and through these processes, I realized I no longer had the expertize and wasn't needed in early education anymore. There were new folks coming on to take on that and to say, no, I'm going to let that part drop away and and leave myself open to the other opportunities I knew were coming and then also my opportunity to help my children grow in their own advocacy and ability to take that baton forward. And so for me, it's was learning when to say yes for the right times and when to say goodbye and thank you to these experiences. And I'm moving on to other new ones. So I'm along the lines of Sarita still, too. But but also something you said has triggered some thoughts in my mind. I'm still relatively new at this also, my son's ten, my daughter's five. I have not been to that burnout stage, but the thought has crossed my mind. And I've realized that at some point I may need to change. I made, you know, my children are going to get older and my interests and my focus may change along with that, I don't know. But what my children have taught me is that I can't plan for everything. So I need to be able to change and adapt and be OK with that. And I think they've done a pretty good job of teaching me those lessons. So so I'm willing I've got an open mind. I've got that perspective in my mind that if something you know, if I get to that point where I need to change focus, I'm OK with it and I think I'll be OK with that at that point. But I'm not burnt out. I'm still ready to go. This is right now where I need to be. It's good, though. The point you made about saying goodbye, you know, I think is to me that sounds like a difference between a no and a goodbye, you know what I mean? Like this. Like, that's, that's huge. And that's that's seasoned material right there. Yeah. You're not saying I'm old! I'm just saying that's wisdom. You're not saying I'm old! I'm just saying that's wisdom. To be able to identify... Because a no means you can come back over here and present the next project to me, and I might give you a yes, but good bye means this chapter is over for me. You know, I'm through with this. So that's, that's just a really good that's what I heard. That's what I took away from that. And that's what that means to me, recognizing when this season of this assignment is completely done when there isn't another opportunity for me to work in this space. That's what goodbye means for me. Like that was just that resonated. That was really good for me. But you also said like, no and maybe come back. I always say when you examine new things, sometimes it's OK to say, no, not this time. Yeah, do come back to me. Like, maybe next time it will work. Maybe my life looks a little bit different. Maybe my workload looks a little bit different, but you know that it is. And that's to see you later. That's not a goodbye. That's not a goodbye. That's that. That's a not for now. That's and the other part of it, too, is in being able to look back now through all these years and getting to know Sarita, especially you and her story of being told about hospice but not palliative care. Well, palliative care was not around at all when my son was born and when we really could have benefited from it. And then hearing your story, I'm taking that on as a new area of learning, although I don't need it now. But I know so many families need that and that opportunity isn't there. So I'm starting to say yes to new things where I'm having to learn. I didn't experience it, but I know it's a palpable need for our community. And knowing you, my friend, has led me on to new things. Yes, yes. I think this journey is full of learning and growing. I don't think that's ever going to change. It's like our children learn and grow. I think our journeys will change along the way, too. Yeah. Yeah. And I just have one more thought. So again, I'm not saying we're hanging it up tomorrow. I'm not, you know, but honestly, as you look at this as sort of your calling or what you were meant to do, you know, I've heard that a lot from all of us. Do you hope you've accomplished something when you, like, kind of hang it up and say, this part's done, I'm ready to go on to something else or whatever that might look? Do you have a goal? And again, it might not be something you achieve, or it might just be a philosophy of, you know what, when I'm done, I just hope things you know, I made it better for someone, right? Like. I know I have that goal. I do, I hope when I am done with this journey, whenever that may be, I hope that I have changed the perspective of medical professionals if if for nothing else, how they view Trisomy 18. I hope that I have given them so much information about Elijah and our experience and and how he's he's an anomaly compared to what we know. I hope that I have given them a perspective that makes them view Trisomy 18 children differently. Mm hmm. And see their potential because it's there if they're given you know what I mean. Absolutely. That that is my hope I hope that I can make them talk about it and say oh I do remember this one kid I've had that happen one time so far our craniofacial specialist, he said that something we experienced and he had no idea what to do. He was like, I need to just think about this. We decided it's too much of a story to share right now, but but we had to make a decision. He did that and just a short time later, another child came in. And when we went for just our annual exam or our six month exam, he said, I have to tell you, I had another child come in with that exact same issue, and I was able to say, Elijah went through that and I went back to what I did for Elijah and did it for that kid, and it happens quicker versus us. It took a lot of process where we were trying to figure it out. So that's what I want. I hope that I have given them more and more physicians. Nuggets like that use Elijah's story to make somebody else's journey a little shorter. So yeah, that's my hope. So mine is I always think about the past and I think about where how much progress has been made in the world of disabilities and you know, I, I don't know what life would have been like 60, 70 years ago if I had my daughter and she was institutionalized. And I think about that a lot. So my goal is obviously to keep going forward. There's still a lot of progress that needs to be made, even though we've had quite a bit of legislative changes and things that have helped our children, medical advancements, there's still so much more to do towards inclusion. And I think that including parents and making sure that they have a voice in our systems is one of the things that I would love to leave behind. And the reason being is that each of our children are unique, each of them possess a gift and they have a potential. They are worthy to be in this world. But if parents don't speak up and talk about that, then nothing's going to change. Systems don't change if they don't hear from families. So I think it's our responsibility as parents, and that's my goal, is making sure that parents are involved in all levels of our systems. I mean, I hope a lot of things. I know it's really hard to pinpoint but it's similar to yours, Marisol, in that there is a respect across the educational and the health care systems that our children, who are very rare, that they are seen as worthy to be at the table as any child and to receive the health care at the level that they need to thrive and that providers have an interest in providing that care, that they want to take care of our children, especially as they transition out of our pediatric world. And into our adult care services. I can't tell you how many times we've had physicians say, no, thank you to my son and not wanting to take on his care because it's challenging and it takes time. So I would hope that if nothing else is helping to change those systems of care, to have an interest in our families and in the patients as they become older and into health adult health systems and then just personally, I'm hoping my children have gained what they need in the way of empowerment and learning and their own courage to take on the baton that we started in our family. And I think that's an important piece because if the parent isn't empowered then you can't teach the child to be empowered. So it really starts right from the beginning is feeling that that sense that you have the ability to fire your physician or. Divorce whoever you want. Yeah. Yeah. And I think for me, when I look back, I am I really am passionate about family leaders. So for me, it's about having made those connections, about watching others go out and tell their stories and do their work. And I hope that the work that I do plays a big part in that and it just sort of trickles out because again, it goes back to so much of what we've talked about. It's it really is modeling it. It's seeing it, right? So it's seeing it in action and it's seeing it how you do it and you do it and you do it and it's all different, but it's all the same. And so it's then allowing those family leaders to find their space and see how that works for them. So what we're doing right now. Yeah, well, thank you. Yeah, I guess that's my checkmark. Yeah. That, that, that's, that's what I want to see. So yeah, thank you again. Such wonderful nuggets in here and it's always such a great pleasure to talk to you three and, and learn more of your stories. So thank you. Thank you. 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 or those of the participants and do not necessarily represent the official views of nor an endorsement by HRSA, HHS, or the US government.