Rarely Familiar

Rarely Familiar

We are families. We are caregivers. We are parents to children with disabilities and rare medical complexities. We are Rarely Familiar. Three moms get together to learn, to relate, and to laugh (a lot) while we share each other’s unique family experiences of raising the rarest of the rare. Our goal is to unite, educate, inspire, and empower people living a rarely familiar life. We are so glad you’re here!

  1. #30: When systems fail, parents rise!

    3D AGO

    #30: When systems fail, parents rise!

    “We repeat what we don't repair. If he can't learn the way we teach, then we have to teach the way he learns.” —Andrea Lawson You Are Not Alone. Even When It Feels Like You Are. Here is something nobody tells you when you bring a tiny human home from the hospital with special healthcare needs: there is no manual. There is also no manual for what happens when that tiny human has needs the world hasn't quite figured out how to meet yet. You just show up. And then you show up again. Sometimes after five hours of sleep. Sometimes after a shower that felt like a spiritual event. This is the honest, unglamorous, occasionally transcendent reality of raising a child with a rare condition. The Board of Directors Nobody Signed Up For This is how it works: not in dramatic movie moments, but in small hinges. A therapist who pauses and asks how are you doing? A geneticist who fights for you behind the scenes. A stranger at a meet-and-greet who says, have you heard of this program? “Build your board of directors”, Andrea says. Find your ride-or-dies. Think of it like a company — who do you want in your corner? Be the CEO of your child’s team. The Things That Should Be Said Out Loud Parents of children with complex needs are quietly, regularly pushed out of jobs — or passed over, or penalized — because employers view the reality of their lives as a liability. Too many appointments. Too much unpredictability. These are not complaints, but facts about a system that was not built with these families in mind.  Andrea is sitting in the rooms where those decisions get made. She is one of the few…and that needs to change! Sitting at the Table Andrea serves on multiple state advisory councils. She is intentional about taking up space — lifting perspectives that might otherwise stay invisible, making sure that people who live experiences like hers are part of the conversation when systems are built. This is not radical. It is common sense. And yet. We repeat what we don't repair, she says. Policies shaped without input from the communities they affect just keep sending everyone back to the drawing board. Parents' voices aren't a nice-to-have. They are the whole point. What She Wants You to Know/Takeaway Take time to process. Be present, even when the road isn't straight. Celebrate in the hallway. Build your team. Trust your gut. You carried this child. You know them better than any chart does. And find community. Because the loneliness of this path is real, but so is the warmth of the people who've walked it. Resources & Links: Thriving Together: Navigating Health care systems with Confidence PACER Center webinar with Andrea, Haley and Dr. Tori Bahr. Help me Grow Birth to 3 program The Lend Project  Leadership Education in Neurodevelopmental Disorders The Masonic Institute for the Developing Brain The Institute on Community Integration ECSE Early Childhood Special Education ECFE Early Childhood Family Education Melanie Demore: You gotta put one foot in front of the other and lead with love Careful, it’s an earworm! Andrea Lawson Eli Brunelle⁠⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at⁠ ⁠All-Good⁠⁠ for logo and brand identity Emily Rodvold at ⁠https://lift-creative.com/⁠ for Web Design and Development Danielle Johnson, Intern for Rarely Familiar

    35 min
  2. #29 From Diagnosis to Advocacy: The Rare Fight

    MAR 20

    #29 From Diagnosis to Advocacy: The Rare Fight

    Anne is the proud mother of Leo, a spirited nine-year-old who faces the challenges of Pompe Disease with bravery and charm. Despite initial concerns about his future, Leo has grown into a sports-loving, energetic little boy thanks to the love and perseverance of his family. Anne's experience with Leo's condition sparked a passion that led her to become an advocate for families affected by rare diseases. For those unfamiliar, Pompe Disease is a rare genetic disorder that affects the body's ability to break down glycogen, impacting crucial organs and muscles. There are two forms—infantile and late onset—each presenting its own set of challenges. Anne, alongside her husband, has been relentless in exploring various treatments and diets to give Leo the best quality of life possible. Their determination even led to the creation of the Pompe Warrior Foundation, proving that a little bit of "Chicago attitude" can go a long way. Fueled by a desire to help other families facing similar battles, Anne and her community rallied to establish the Pompe Warrior Foundation. With support from researchers like Dr. Dominic "Dom" D'Agostino and donations from generous contributors, the foundation is pushing the envelope in researching dietary approaches combined with enzyme replacement therapy. Their efforts are propelling policy and practice changes that could transform lives. Anne reminds us all that families living with rare diseases often straddle two worlds: the everyday and the medical. The support from the community, whether through thoughtful gestures like doing laundry or simply acknowledging their journey, makes a world of difference. By sharing her story, Anne invites more people to understand the dual reality of rare disease families and to offer genuine support. As we continue to raise awareness and foster understanding, Anne's story offers a powerful message to the rare disease community: You're never alone. The bonds formed with fellow parents, researchers, and advocates create a safety net of understanding and solidarity. Together, anything is possible. In closing, we extend our deepest gratitude to Anne St. Martin for sharing her story and her work with the Pompe Warrior Foundation. May her story inspire us to act, support, and create a world where rare disease families feel seen and heard. Thank you for joining us on this enlightening journey. Remember to wear your stripes and show your support as Rare Disease Month comes to a close, and until next time, keep spreading positivity and awareness! For those interested in contributing to the Pompe Warrior Foundation or learning more, links and resources are available through the Rarely Familiar podcast or directly through the foundation’s outreach channels. As Anne poignantly observes, "We live in grief and joy at the same time," a sentiment that resonates deeply with anyone touched by the challenges of rare diseases. RESOURCES AND LINKS ⁠Pompe Warrior Foundation⁠ ⁠Sparks Therapeutics⁠ Courage Kenny Rehabilitation Institute HopeKids Special thanks to: Anne St. Martin for sharing their story⁠⁠⁠ and the Pompe Warrior Foundation Eli Brunelle⁠⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at⁠ ⁠All-Good⁠⁠ for logo and brand identity Emily Rodvold at ⁠https://lift-creative.com/⁠ for Web Design and Development Danielle Johnson, Intern for Rarely Familiar Stay Connected with Rarely Familiar:⁠⁠⁠ ⁠Instagram⁠⁠ ⁠⁠⁠⁠⁠⁠Facebook⁠ ⁠⁠⁠⁠⁠⁠Rarely Familiar Website⁠⁠⁠ E-mail: info@rarelyfamiliar.com

    28 min
  3. #28 The Body Remembers: Play Therapy and Trauma-Informed Touch

    FEB 8

    #28 The Body Remembers: Play Therapy and Trauma-Informed Touch

    In this episode of Rarely Familiar, hosts Jen, Tram, and Haley talk about the real-life chaos and beauty of raising kids with rare conditions. They’re joined by experienced clinician Emily Benson, founder of Beginnings and Beyond Counseling/Play Therapy Minnesota and High Vibrations Healing, who brings both expert wisdom and serious compassion to the table. Emily—a licensed clinical social worker and somatic experiencing practitioner—breaks down how play therapy, somatic experiencing, and trauma-informed touch can be powerful tools for healing big trauma in little bodies (and their grown-ups, too). The conversation weaves through Emily’s path into social work, why play therapy can be a game-changer for neurodivergent kids, and how parents can calm their own nervous systems when life feels like a nonstop medical rollercoaster. With plenty of personal stories, honest laughs, and practical tips, this episode tackles medical trauma, child development, and caregiver survival with warmth and humor. As always, the hosts remind us that while this journey can feel isolating, community support—and a little levity—can make all the difference. Understanding the Magic of Play Therapy Imagine a child who, after overcoming a difficult medical experience, uses castles, cars, and teddy bears to symbolically convey their fears and triumphs. Play therapy is an incredible therapeutic tool where children use PLAY to express their experiences and emotions. Emily explains that it’s a process where kids lead the way, and therapists observe and follow. Children may enact scenarios with their toys to communicate what's swirling in their little heads, helping them process trauma in a safe and nurturing environment. Somatic Touch/Experiencing: The Healing Power of Physical Presence Somatic Touch is a hands-on approach that provides direct support to the nervous system, often used with early or developmental trauma. Through gentle, intentional touch, therapists help the body feel supported and regulated. It is used alongside SE when appropriate, always with consent, and is not massage or physical manipulation. Somatic Experiencing (SE) explores how the body expresses deeply painful experiences, applying mind-body healing to aid with trauma recovery.  This technique focuses on helping clients notice and track bodily sensations. The goal is to gently guide the nervous system out of survival responses—like fight, flight, or freeze—and back into a sense of safety and regulation. Trauma is processed through awareness of physical sensations rather than retelling traumatic events. Touch is not a required part of SE. Inhale Peace, Exhale Stress Finally, while we're on this therapy train, don’t overlook some quick self-help techniques: Emily recommends breathing exercises that sound simple but pack a wallop. Breathe in, breathe out, and make your exhale last twice as long as your inhale. It’s like a mini spa day for your nervous system. No trip to the stress-induced fridge meltdown required! Nervous System Regulation Techniques: how to bring your nervous system back to stability during moments of stress or emergency Regulation Breathing: Lengthen your exhale to twice the inhale (like blowing out birthday candles) to calm anxiety. Somatic Self-Hug: Right hand under left armpit, left arm over right shoulder for grounding and containment. Foot Grounding: Stand and gently roll through the balls, heels, and edges of your feet. Vagus Nerve Activation: Use cold input—ice water, a cold shower, or gargling—to stimulate regulation. Sensory Soothing: Soft music or other calming sensory input to support connection and regulation. Resources & Links:  High Vibrations Healing  Beginnings and Beyond/Play Therapy Minnesota Emily Benson’s LinkedIn  Special thanks to: Eli Brunelle⁠⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at⁠ ⁠All-Good⁠⁠ for logo and brand identity Emily Rodvold at ⁠https://lift-creative.com/⁠ for Web Design and Development

    32 min
  4. #27 One Dad's Mission: Uniting Fathers for Down Syndrome Advocacy and Support

    JAN 2

    #27 One Dad's Mission: Uniting Fathers for Down Syndrome Advocacy and Support

    When Jacob Esser couldn’t find a community for dads after his son Levi was diagnosed with Down syndrome, he created one. In this episode of Rarely Familiar, co-hosts Haley, Jen, and Tram sit down with Jacob, founder of Dads of Down Syndrome (DODs), to talk about fatherhood, advocacy, and the power of connection. What started as a casual meetup at a local bar has grown into a thriving community of dads supporting one another through the highs and lows of parenting a child with a disability. Jacob shares the personal journey that led to DODs, how the group challenges stereotypes about fathers’ roles in caregiving, and why male-centered spaces matter in disability and parenting communities. Together, we explore how shared experience builds brotherhood, reduces isolation, and fuels advocacy. We also talk about the future of DODs—including expanding partnerships, community events, and a chapter-based model that could bring this movement to more cities. This episode is for anyone seeking connection, community, and a reminder that no parent—especially no dad—has to do this alone. Resources & Links Mentioned: Dad’s of Down Symdrom, DODs Jack’s Basket: Celebrating Babies with Down Syndrome Down Syndrome Association of Minnesota Gigi’s Playhouse Twin Cities The Hilltop Stay Connected with Rarely Familiar: Instagram⁠ ⁠Facebook ⁠Rarely Familiar Website ⁠E-mail: info@rarelyfamiliar.com Special thanks to: Jacob Esser from DODs for sharing his story⁠ Eli Brunelle⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at ⁠All-Good⁠ for logo and brand identity Emily Rodvold at https://lift-creative.com/ for Web Design and Development And everyone who continues to support us by sharing your feedback, liking and following. Keep spreading the word, we're just getting started!

    38 min
  5. #25 Redefining Possible: Parenting, Passion, and Perseverance

    11/23/2025

    #25 Redefining Possible: Parenting, Passion, and Perseverance

    In this episode of Rarely Familiar, Katie Sherman, a mother of four and a physician assistant, talks about her background in art, her transition into medicine, and her decision to return to medical school as a non-traditional student. She opens up about her son Wendell’s rare genetic condition, the family’s medical journey, and the importance of acceptance, resilience, and community support. “This is Wendell’s life…and this is who he is becoming…but I am also going to focus on who I am becoming…” The discussion covers: The emotional process of accepting a child’s diagnosis and letting go of expectations. The value of maintaining personal interests and hobbies (like running and art) for self-care and family well-being. Practical strategies for time management, balancing family, work, and personal growth. The role of community and support systems in enabling parents to pursue their goals. Advice for other parents and caregivers on taking the first steps toward their own passions, even amidst logistical and emotional barriers. The episode closes with reflections on resilience, the importance of slowing down, and encouragement for listeners to find what brings them joy and fulfillment. Tips on how to follow your passions and goals when life feels overwhelming References and links shared during the show Evaluate your community as it often does take a village Ask lots of questions, do your research Look at your life from death moving backwards Stephen Covey said, "Begin with the end in mind." Where do you want to be when you are 70? Take it one day at a time when feeling stressed or overwhelmed.  Go to class.  Put your shoes on and start your run, etc. Katie’s Blog: https://medium.com/@katie.sherman Follow Katie on Instagram: katiesherman79Momentum Refresh V3 Sports  The Really Big Game The Highland Friendship Club ECSE - Early Childhood Special Education Parent Magazine The Mary Hanson Show (“Parenting a Child with Disabilities, Heartbreak and Hope”) Stay Connected with Rarely Familiar: Instagram ⁠⁠Facebook⁠ Rarely Familiar Website⁠ E-mail: info@rarelyfamiliar.com Special thanks to: Katie Sherman for sharing her story⁠ Eli Brunelle⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at ⁠All-Good⁠ for logo and brand identity Emily Rodvold at https://lift-creative.com/ for Web Design and Development Danielle Johnson, Intern for Rarely Familiar

    43 min
  6. #24 Ableism Uncovered: Real Stories and Honest Conversations

    11/02/2025

    #24 Ableism Uncovered: Real Stories and Honest Conversations

    Welcome to Rarely Familiar! In this episode, we’re joined by Katrina—advocate, Minnesota LEND fellow, and host of the “Boldly Challenging Ableism” podcast for an honest and eye-opening conversation about ableism. We dive into what ableism really means, how it shows up in everyday life, and why it matters for families, educators, and allies. Katrina shares her personal journey from Camp Courage (now called Camp True) to disability advocacy and podcasting, offering real-life examples and practical advice for building a more inclusive world. Topics include: Defining ableism: physical, structural, and internalized Personal stories from parents and advocates The impact of language, assumptions, and “inspiration porn” Shifting from independence to interdependence and supportive care Tips for allies and families Whether you’re new to the topic or looking to deepen your understanding, this episode is packed with insights and inspiration.  Don’t forget to like, comment, and subscribe for more conversations on inclusion and advocacy! TIPS for confronting Ableism: Understand the definition of Ableism and how it shows up day to day.   Recognize the two main types of Ableism: physical and mental.  See person first vs. disability first Ask first, don’t make assumptions based on one’s physical or mental limitations. Resources:  Camp True Boldly Challenging Ableism PodcastAutism Self-Advocacy Network Stay Connected with Rarely Familiar: Instagram⁠ ⁠Facebook⁠ Rarely Familiar Website⁠ E-mail: info@rarelyfamiliar.com Special thanks to: Katrina for sharing her story⁠ Eli Brunelle⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at ⁠All-Good⁠ for logo and brand identity Emily Rodvold at https://lift-creative.com/ for Web Design and Development

    37 min
  7. #23 Julian’s Story: From Crisis to Comeback

    10/08/2025

    #23 Julian’s Story: From Crisis to Comeback

    When the phone rings during a school day, every parent’s heart skips a beat. For Jen, that call marked the beginning of a harrowing journey—one that would test her family’s resilience, the limits of medical science, and the power of community. In this episode of Rarely Familiar, we dive deep into Julian’s story: a sudden medical emergency, a whirlwind hospital stay, and the long, uncertain road to recovery. A Day That Changed Everything It started like any other Monday, but quickly spiraled into crisis. Julian, a vibrant teenager with a rare genetic condition, was suddenly unresponsive at school. Jen rushed to his side, only to find him unable to move or communicate. The next hours were a blur—speeding to Children’s Minnesota hospital, a flurry of doctors and nurses, and the terrifying realization that no one knew exactly what was wrong. Julian’s condition deteriorated rapidly. He suffered paralysis, seizures, and brain swelling. The medical team consulted experts across the globe, but answers were elusive. As days passed in the PICU, Jen and her family faced the unthinkable: emergency brain surgery to save Julian’s life. The Long Road to Recovery After a successful craniectomy, Julian’s journey was far from over. He spent months in rehab at Gillette Children’s, relearning how to walk and reclaiming his independence. The family navigated the complexities of FMLA, short-term disability, and the emotional toll of crisis. Through it all, they discovered the importance of self-care, documentation, and clear communication with medical teams. Julian’s story is one of hope. Against the odds, he walked out of the hospital three months later—smiling, laughing, and ready to embrace life again. CaringBridge Website to post updates and share CaringBridge links on social media.  Direct friends and distant family to post comments there and hold on texting so that text messages can be utilized for crisis management. Julian’s CaringBridge as an example. Utilize pictures to showcase your child.   A picture is worth a thousand words, by creating a photo board it shows your child’s baseline and humanizes them.  Practice saying “yes” to those offering you help (watering your plants while you’re away, bringing you dinner, cleaning at your house) Seizure Action Plan: Be explicit with school or anyone who is caring for your child about their Seizure Action Plan and usage of seizure rescue medicine protocol.  Advise to  call 911 immediately then contact the parent; atypical presentations still warrant an action.  Call 911 early if something is clearly off or atypical for your child. Notetaking: Buy a big notebook for the hospital and leave it in the room to jot down notes, ideas, questions, and can act as a resource during a period when sleep deprivation does not help with remembering what the doctors/therapists discussed with you. Ronald McDonald House is there for a reason––use it! Inpatient Resources: Meals both sit-down and on-the-go, rooms, other amenities, if available at your location. Protect your job and income (U.S.) Tell your manager early (“My child is inpatient; I will be unavailable. I’ll share a contact for urgent needs.”) Use PTO first, then FMLA (up to 12 weeks of job protection) Short-term disability (through employer or state, if applicable) may cover a portion of your income when your own health/mental health makes work impossible during the crisis. A brief note from a clinician can help. Special Thanks to: Jennifer and Julian for sharing their story⁠ Eli Brunelle⁠⁠ for Intro and outro Music "New Love" Todd Piper Hauswirth at All-Good⁠ for logo and brand identity Emily Rodvold at https://lift-creative.com/ for Web Design and Development

    45 min

Ratings & Reviews

5
out of 5
5 Ratings

About

We are families. We are caregivers. We are parents to children with disabilities and rare medical complexities. We are Rarely Familiar. Three moms get together to learn, to relate, and to laugh (a lot) while we share each other’s unique family experiences of raising the rarest of the rare. Our goal is to unite, educate, inspire, and empower people living a rarely familiar life. We are so glad you’re here!

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