Finding The Joy | Carol Combs

From Starfire, this is a podcast on what's more possible in inclusion, community building and relationships.

Please note: The following podcast transcript is machine generated and may contain spelling and grammatical errors.

Robbie:

Hello and welcome to Starfire's podcast, More. I'm Robbie Jennings Michels, and I'm talking with Carol Combs, who leads our Family Leadership Network here at Starfire. The Family Leadership Network is a family led effort that empowers families of loved ones with developmental disabilities to cast a vision for what's positive and possible for themselves and their families, and it gives families an opportunity to discover interests and identities beyond disability.

One of the best parts is that families become, as we say, named and known in their communities, named and known for something other than their disability for something they're interested in, for something they do really well. And it gives families a chance to spark some connections and nurture those into real relationships, relationships that are based on common interests. Families get three essential supports from the network, there's mentorship, which is free monthly one-on-one sessions with a dedicated Starfire family mentor.

And that's important because that family mentor has firsthand experience as a parent of someone with a disability who's launched their own family project. We also have a monthly community design session and a community story hour and a families at the center of a connected community training that's happening this month and next. So be sure and check out our website. Lastly, we pay families for their time and we give them funds to host their own community project to pay for things like refreshments or signage or supplies, whatever they need to launch a project that they design that's unique to them, and that helps them spark connections that can be nurtured into relationships.

Families in the network are asked to ascribe to four commitments, discovering their community gifts not fixing what's wrong, creating something through the family project that belongs to them in their neighborhood versus recreating old service models. And the fourth commitment is what we're here talking about today. It's joy, and the commitment is focusing on joy and not commiseration. So Carol Combs hosted a family project in her Hamilton, Ohio community. Carol, tell us about that first project, how that impacted your family and what's life been like for you since, as we say, you stepped into this space?

Carol Combs:

So I'll start by just sharing a little bit of who we are as a family and what we did. Five years ago, we started on this incredible journey of really discovering and we were discovering who we were, what was our purpose and belonging, and what gifts we had that we could contribute to our community. So with the support of a mentor through Starfire and some funds, we were able to launch a family project and we landed on doing a Sew and Play. Sew and Play is where you gather with friends and neighbors in a shared space in your community and you learn how to sew together. This was super important for our family because as we thought about what we'd like to do, we wanted to ensure that it was something that we could do well past the timeframe of the family project, and so, we landed on sewing.

Now, the funny thing here is that none of us really knew how to sew like at all. And so, one of the first things we had to do was find someone who knew how to sew. And that's part of the family project process we went through was learning how to connect with people and to invite people into a space with us. It's not about the sewing, it's about the coming together and getting to know one another. So we found our expert sewer, Ms. Sandy. And Sandy had been in our lives for some time, we just didn't know her that well. And what I learned later on is that Sandy was wanting to be a bigger part of our family, she was just waiting on that invitation.

So in 2018, we launched a Sew and Play here in the city of Hamilton. We held it at a local park that was fully accessible and allowed people just to jump in, they take a break from play and sew a button, and the end result of that is this beautiful story quilt that tells the story of our summer of connecting. Our story quilt is really cool because like in traditional quilting, it's a one person working on one panel, and this was the entire community working on one panel each week. So it was really cool. We said yes to the family project because at the time we were feeling very lost and lonely and at the mercy of the systems we were hyper-focused on the list of can'ts won'ts and nevers attached to my son's diagnosis. And we were just really stuck in a place of wanting something different and new.

Robbie:

Thank you so much for sharing that. Oh, I love that story quilt outcome. Who else helped you along the way?

Carol Combs:

Oh, man. So there's instantly a lot of names that come into play. First, I just want to say that we learned how to start connecting with people. So one support that helped us along the way was the mentorship. I was given some resources that taught me how just to talk to my neighbors because we had never been in that space before. If it didn't include services, we said no because it was just really easier that way and it felt safe for us as a family. And so, I stepped bravely into a space where there was a neighborhood meeting that someone I had met suggested to me. And little did I know that by attending that neighborhood meeting that night, that our family's network of people supporting us would grow tenfold. And so, along the way, us as a family, we've helped each other and we have also gathered these people in the community. Pastor Aaron, Kathy Frank, Brandon, Brooke, these folks and many, many more that I'm not even mentioning really helped us along the way because they were helping us find places where we could engage and get to know people.

Robbie:

One of the things, Carol, that I love most about your family project story is the impact that it had on the care of your son, Grayson. I believe he's 13 now. And you have shared that before you stepped into this space when you needed to call for EMT support for things like seizure monitoring or suction assistance, but in the past, you have felt like a burden. And after those family projects and after the Sew and Play events, the EMTs would come in and say, "Oh yeah, hey, Grayson, how's it going? We know you." I think that speaks volumes to just the mind shift that can occur when you are named and known in the community. Can you talk about some of your other takeaways from this family project journey?

Carol Combs:

Absolutely. So you named one of the biggest and I think most important pieces for me is that named and known, Grayson is my 13 year old son. He was born with a developmental disability. We were given a very long list of can'ts, won'ts and nevers, and it became like, how do you move past that? And so, that's where stepping into the space with Starfire really changed our world for the better because it allowed us to put that disability, allowed us to put that list of can'ts, won'ts and nevers on the back burner and really discover who Grayson is as a person. He's a neighbor, a friend, he absolutely loves '80s wrestling of all things, and he's a fan of his local sports team, so Cincinnati Reds and Bengals. He holds the gift of being a community connector. So for Grayson to be named and known for his gifts and what he brings to this world was such a breath of fresh air for me.

When we started as the Combs family activating spaces, people got to know Grayson in that process. So Grayson being named and known, let him be Grayson Combs, part of the family doing cool things. We found our place of belonging, we discovered purpose, and those connections that we talk about grew into relationships. I don't have to ask for special accommodations for Grayson to show up in the community anymore. Do you know why? Because they know him, it's no longer an ask. It's a, "Oh, Grayson is coming? Great. We're all set up for him anyway." Every connection is an opportunity for a new relationship to form. And my hope is that every year for the rest of my life, I add one new relationship to our family.

Robbie:

And that feeling like you belong and that feeling of individuals being in your life who want to be there, who have two-way conversations with you that don't surround or involve disability, that provides a wonderful equilibrium. And interestingly enough, finding joy is the fourth commitment of the Starfire Family Leadership Network. We know that joy is powerful and sadly, sometimes joy is elusive. How were you able to unlock it?

Carol Combs:

I'm just going to be honest and say it was the hardest commitment for me to really lean into. That may sound surprising for some folks listening who know me because joy is at the heart of who I am. But at the time we were like sadness and this commiseration was taking center stage in our family and we had to find a way to break through that. And that's why this commitment for me was the most important because it was the one that required me to be the most mindful around. I really had to wake up every day and say, "I'm making a commitment to joy."

Now, what I've come to understand about joy, at least for me, because that joy is always there and it's waiting to be activated or unlocked. So we have this feeling of joy sitting within us, but sometimes we have to have those activators of it. For me, what I found is that unlocking those joy keys, if you will, within our community and they're kind of floating around all the time and they come in the form of memories, but they also come in the form of people. People in our community are our joy keys that unlock that feeling that lives within all of us. And what I've learned is that even in the hardest of human conditions, joy is present.

Robbie:

Carol, tell me more about the human conditions.

Carol Combs:

So human conditions are just markers and time. They can be celebrations, they can be the birth of a child, they can be the death of a loved one or a person within the community. Human conditions are illnesses and the feeling of sorrow. Human conditions are also in a place of happiness.

Robbie:

Well, I think it's fair to say that you and your family have had a year chock-full of human conditions. I know that it's been very intense and you and your family have experienced all of these human conditions in the last 12 months. Would you agree?

Carol Combs:

Absolutely. I would agree.

Robbie:

And maybe intense would be an understatement, but gladly, you're here in joy. Tell us about your year.

Carol Combs:

I am here in joy today and it's great to be here in the space of joy, but our year has been intense, to say the least. Over the last year, our family experienced my own diagnosis with breast cancer, which wrapped our world in a pretty big way. There were a lot of unknowns, a lot of uncertainty, and goodness, what happens when mom who leads the ship and navigates the waters for everyone isn't at her best. And there were days when it was really, really hard when I opened my eyes and my body hurt head to toe from treatment and I didn't know how I was going to get through the day right to function, I would lay in bed and I would think about joy. Who are those people? What are those things that are going to help me unlock joy today. I'm happy to report that I'm a cancer survivor, but it took a lot out of us in the last year.

During that same time, my mom, who was instrumental in our efforts to find purpose and belonging within the city of Hamilton became ill. She too was diagnosed with cancer and she passed away at the beginning of September. These two things combined really challenged us as a family and lots of different ways. One of the biggest challenges was, how in these moments of human condition is joy even possible? And I'm here to share that joy is possible during these times. We have those joy keys floating around and they come in the most unexpected ways. For me, when I think back over the last year, I can say that had it not been the work that we did as a family to grow connections and to build these relationships, we would not have come out on the other side of these things with joy still coming from our hearts and coming from within us.

It was our community and it was our connections that really supported us, not just through my journey with cancer. It was the community that supported me and our family when we lost mom. Mom was instrumental in the community. And I thought back to that story that John shared about the bereavement counselor and how care can't be produced by a system because what care is is a manifestation of community members with the capacity to care for one another. And as a family, we got to experience that.

Robbie:

And the capacity building that the Combs family did helped unlock that community and that joy that would have otherwise not been there. I can't thank you enough for sharing your story. I am thrilled to hear that you are cancer free. And I'd also like you to tell us a little bit more about the legacy that your mom left in the Hamilton community.

Carol Combs:

Mom, through our family's efforts became named and known in our community. It was something she hadn't experienced in her 60 plus years of living here because she hadn't really thought about the importance of community until, as a family, we started thinking about it. So when mom passed away, our community surrounded us and they helped carry the weight of the grief and they mourned with us. And from that, we were able to draw strengths and find joy. And so, the legacy that mom has left behind is that legacy of connection. The work that she and I did and the Jefferson neighborhood to ensure that all the residents there knew that they were welcome, that they had a place in the community to safely gather at Jefferson Park. That was her legacy.

And so, this past month, at the end of October, we were able to honor mom, and it wasn't of my suggestion, but members of our community came to me and said, "We'd like to honor Billy. She was an important part of our community and she is deeply missed. We know that she loved the park." The park was mom's favorite space, and she took it upon herself to care for this park. Walking it every day to make sure it was safe for the day's flow of kids and she spent a lot of time just sitting on that bench reflecting.

And so a few years ago, we had the random opportunity, somebody called us up and was like, "Hey, we have all these extra pumpkins. Could you all do something with it?" Me and mom looked at each other and we were like, "Yeah, we can do something with these hundred pumpkins." And within a two week period, she and I, with the help of some of the Jefferson Alliance folks, did a pop-up pumpkin patch at Jefferson Park. We did it on like $50 enough to buy drinks, popcorn and some paint. We set up tables and a popcorn machine. And for three hours that day, we greeted neighbors, gave them a pumpkin, and we painted alongside them.

And so, at the end of October, we honored mom by doing a pop-up pumpkin patch that was suggested by folks in our community that knew her and knew her love just for the park and bringing people together. And it was really beautiful. And it was a reminder of like, wow, mom made an impact that we didn't even recognize that, I mean, people who didn't know mom knew her because they were using that park and they had seen her. And so, to be able to come together with community and celebrate joyfully this legacy of Billy Varon, that the person who took charge of the park and made it her own and worked to connect people in the community, it was just really beautiful in the state of the city. There was an acknowledgement to her work and our work together as a family to build a more connected Hamilton.

Robbie:

Oh, thank you so much for sharing that and for reminding us that without sorrow, there is no joy. And thank you for helping your Hamilton, Ohio community heal and build connections and be brave by stepping into this space. Families, if you are interested in learning more about the Starfire Family Network, we invite you to go to starfirecincy.org/families or reach out to Carol directly at carol@starfirecouncil.org. Again, Carol, thank you so much for your time today.

Carol Combs:

Thanks for letting me share.