We Are Brave Together: A Supportive Community for Moms of Children with Special Needs
We Are Brave Together is a non-profit organization and a supportive community for moms of children with special needs. Founder, Jessica Patay aims to bring these mothers together to find strength in one another. Beyond Type 1 spoke with Jessica about her incredible journey and the mission behind We Are Brave Together.
BT1: Thanks for Talking to us today Jessica. Can you start by telling us about the founding of We Are Brave Together?
Jessica: I like to say that We Are Brave Together was born out of a beautiful collision in my heart, of my passion for community and connection and the friendship of women, colliding with my heart and burden for special needs moms and dads, and their families, knowing what the journey is like.
I have a son [Ryan] who is 17, almost 18, and he has Prader-Willi syndrome, which is a rare genetic disorder. It’s medically complex. I always apologize that there’s no cocktail party answer to explain it.
It has been quite a journey. From the beginning, I was given a mentor mom from the foundation that supports families in California. And my husband and I are social bugs, and we created community also when Ryan entered the school district at age 3. And we found our people there to navigate the waters of IEPs [Individualized Education Programs] and everything that goes with school needs. We’ve always had support in community and I know that moms are overwhelmed. They are so overwhelmed with their lives and with their children’s needs, and with a thousand therapies per week or specialists, or what have you.
And I thought, “If I create something, maybe moms will just show up.” If I can create the community where moms can come and be with other moms who get it, who understand that this altered motherhood experience comes with stress and isolation and cyclical grief, and be among other people who just say, “Yes, I see you. I get you, and I’m here for you,” I just had to do something, because I just know what the journey is like, having my son, Ryan, and how extremely difficult and different it is, when you have a child that struggles in some way.
What would you say are the core values of We Are Brave Together?
Something I like to say, is that connection and community are critical to surviving well and with joy, amidst chronic hardship. And, so, whether your community is a few people or many, many, it’s critical to have that, and to be a part of that, and to have that sense of belonging.
One thing I also say is, “Let us share and not compare.” And, so, it is a judgment-free zone, and we’re not here competing or comparing pain. It’s not the hardship Olympics. We’re here really to just support and validate and encourage. And if someone asks a question, and they want feedback, then a seasoned mom can jump in and share their experience or wisdom.
I say that every story counts. So whether your child has a diagnosis that you feel is light, or you feel like, “Oh gosh, these other moms here in this support group, or at this retreat, their story is way worse than mine. I can’t possibly say anything,” where moms minimize their own journey.
Or you’ve got moms who might be in one of our gatherings, and they think their story is too intense, that their extreme caregiving is just, it’s too much to burden others in the group with, I say, “Everything matters. Every story matters.”
So, wherever you are on the spectrum of extreme caregiving or whatever that looks like, it matters because your life has changed. It’s still a challenge. It’s still involves stress and grief and all of the emotions. And, so, we’ve created a safe space for moms to say whatever they want to say. And there is no judgment, and there is no comparison.
What does We Are Brave Together offer?
We launched in 2017 with a big summer inspiration party, which became an annual event for moms to come and have a night off. And we have an inspirational speaker and food and drinks and dessert, and just a time of connection.
And then we launched support groups, in-person support groups, in our area in Southern California. We also offered retreats, and we would do retreats out in the desert. We did a retreat in Florida, San Diego, several out in the desert of an intimate gathering of 25 moms. And we would only charge a small amount, hoping to make it accessible to moms. And then we also heard that even that was not doable for some, so we have retreat scholarships.
So these are things that we were offering before COVID, and we had support groups, workshops and retreats, and we have our online support group through Facebook, It’s a Secret Facebook group, for moms to gather and chat and meet and ask questions or vent or share a story or a triumph.
And then COVID hit. So we pivoted like everybody else, and everything’s been virtual for the last year. We did a virtual retreat last fall. If we are unable to gather still for a retreat this fall, then we will do another virtual retreat.
And then we launched a podcast last May called “Brave Together.”
How can someone go about getting involved with your org?
Our umbrella is huge. I don’t know if I said this at the beginning, but to be a part of the community of We Are Brave Together, you just need to have a child any age, or adult child, with any kind of diagnosis, challenge, or disability, be it medical, developmental, genetic, mental health issues any and all of it. We have moms who have joined, who have children who are struggling with depression and anxiety, OCD.
It’s a big, big umbrella. And all you have to do is go to our website, wearebravetogether.com, and there’s a little pop-up form that you fill out. And on that you will be asked if you also want to be a part of the secret Facebook group, and we can add you in to that as well. And everything that we are doing is on our website. And we have satellite support groups and other cities and states, and more to come, which is exciting to be able to expand in that way.
Is there anything else you’d like to share about We Are Brave Together?
I would just want to share that our mission is really to combat the isolation and compassion fatigue that moms face. And we’re doing that by our gatherings right now, virtual gatherings, and having the community online, that we just really want moms to feel like they are not alone because it is a very isolating … And especially right now, in the middle of this season, it is more isolating than ever. And it’s really a struggle for moms and dads who have children with extra needs. It is just a disaster for families. It really is.
So, we know that there are people out there who need the support and need to be reminded that they’re not alone and that they are stronger and braver, however cliché that sounds, than they think. That’s what we do for each other, is we see each other and remind each other who we are, and what we can do and what we have done. So, I encourage any mom who’s reading this to just join our community because we’re here for you.
You can find We Are Brave Together by visiting wearebravetogether.com.
