Send us a text Ever feel like the world is just... too much ? Whether it's the endless news cycle, the weight of caregiving, or just the everyday overwhelm, you’re not alone. In this episode, I’m opening up about what happens to our nervous system when we’re overloaded—and sharing simple, accessible grounding techniques that can help bring us back to center. I’ll walk you through practical ways to regulate your body when it’s in survival or burnout mode, including: Getting outside and standing b...
Jun 26, 2025•27 min•Ep. 64
Send us a text In this casual solo episode, I’m just catching you up on what life has looked like lately over here. From solo parenting while Donald’s been away for job training, to the kids catching colds (because of course they did while Donald's gone), to navigating IEP meetings and school plans for next year—it’s been a lot, but also I'm surviving it! I’m sharing a peek into the daily chaos, the mental load, and some of the sweet moments too. Plus, we’ve got an upcoming trip on the calendar,...
May 28, 2025•30 min•Ep. 63
Send us a text In this special episode of Confessions of a Rare Disease Mama , I'm sharing the live audio from a panel I had the honor of moderating at the Global Genes Rare Advocacy Exchange. This conversation dives into the power of creative fundraising —something so many of us in the rare disease community are tasked with, whether we feel ready or not. You'll hear from three incredible rare parents who are using their voices, talents, and grit to fund life-changing research and support. We ta...
May 07, 2025•1 hr 7 min•Ep. 62
Send us a text In this solo stream-of-consciousness episode, I’m catching you up on everything happening in our world lately—from the latest updates on Roman and Stella’s treatment journey, to exciting news about my book Soaring Together , to some personal reflections on life, advocacy, and motherhood. You'll hear about where we are with the investigational brain medication, some hopeful signs we've been seeing, our upcoming family trips, and a big (and bittersweet) decision we’re considering fo...
Apr 23, 2025•32 min•Ep. 61
Send us a text Finding financial support and resources as a rare disease parent can feel overwhelming—but what if there was a platform designed to make it easier? In this episode of Confessions of a Rare Disease Mama , I sit down with Abby Zachritz , also known as Advocacy Abby , to talk about the incredible tool she’s created in partnership with SupportNow to connect families with grants and resources tailored to their child’s diagnosis and location. Abby shares how her own experiences as a mot...
Mar 05, 2025•59 min•Ep. 60
Send us a text In this episode of Confessions of a Rare Disease Mama , I'm joined by Hilarie Geurink, a registered dietitian with a passion for empowering families to explore real food blended diets for their loved ones. Hilarie specializes in creating personalized nutrition plans that incorporate whole foods, providing an alternative to traditional formula-based tube feeding. We discuss the benefits of blended diets, practical and easy tips for getting started, and how they can positively impac...
Jan 29, 2025•1 hr 2 min•Ep. 59
Send us a text In this moving episode of Confessions of a Rare Disease Mama , I sit down with Lauren Williams, a rare disease advocate and one of the driving forces behind the CureGRIN Foundation. Lauren shares her journey as a mother to a son who bravely fought against GRIN1, a rare genetic condition, and the heartbreak she has and continues to endure from his passing just over a year ago. Lauren opens up about how she made the decision to continue to advocate after her son's passing, dedicatin...
Jan 17, 2025•53 min•Ep. 58
Send us a text As the new year begins, I’m sharing some personal changes I hope to put into practice in 2025. From doing more gratitude journaling to developing better sleep habits & less doom-scrolling before bed, I’m diving into the shifts in routine I want to cultivate this year. I’m also opening up about how the winter months affect me (especially once the holidays are over) and the intentional ways I’m working to combat the seasonal blues. If you’re someone who feels the weight of the c...
Jan 07, 2025•23 min•Ep. 57
Send us a text In this solo stream of consciousness episode, I reflect on the unique challenges and joys that the holiday season brings for families navigating rare diseases and medical complexities. I share practical tips for managing expectations, creating meaningful traditions, and finding joy in the small moments. I'm here to offer encouragement for parents feeling the weight of the season, reminding them that connection and presence matter far more than perfection. Whether you’re scaling ba...
Dec 22, 2024•33 min•Ep. 58
Send us a text In this deeply personal episode of Confessions of a Rare Disease Mama , I sit down with Ashley Haywood, a devoted mother and passionate advocate for her 8-year-old daughter, Sadie, who is living with Sanfilippo syndrome. Often referred to as "childhood Alzheimer’s," Sanfilippo syndrome is a rare and progressive genetic condition that profoundly impacts children and their families. Together, Ashley and I explore how our children's life-changing diagnoses reshaped our lives in ways ...
Dec 03, 2024•1 hr 7 min•Ep. 56
Send us a text In this episode of Confessions of a Rare Disease Mama , we dive into the complexities of family transitions with Mary Ann Hughes, a certified Special Needs Divorce Coach. Mary Ann took her own experience of navigating divorce after 21 years of marriage, and raising two children on the autism spectrum, into a mission to help others. Mary Ann shares her invaluable insights and compassionate guidance on navigating divorce and separation when a child has profound medical and/or behavi...
Nov 05, 2024•41 min•Ep. 55
Send us a text Tune in to this mini episode to learn what my exciting, big announcement is! It's a very special project I've been quietly working on for years & cannot wait to share it with you all! Donate to Hurricane Helene recovery efforts in NC here Donate to Hurricane Helene recovery efforts in FL here Resources & Links for this episode: Buy Soaring Together : Amazon , Barnes & Noble , or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more about o...
Oct 01, 2024•16 min•Ep. 54
Send us a text In this episode I welcome back (for a repeat appearance!) Director of Community Engagement of Global Genes, Mr. Daniel DeFabio. During our conversation, we dive deep into the many facets of advocacy that we, as rare parents and caregivers deal with. Daniel shares his vast knowledge and experience in the rare disease community and together we break down the eight different types of advocacy that every rare disease parent/caregiver or patient can engage in. From policy advocacy to s...
Sep 17, 2024•59 min•Ep. 53
Send us a text Enjoy this solo catch-up episode! Some things I bring up during this episode: -Our kid's starting school (homebound vs. in person) -Roman's upcoming SIXTH birthday & fundraiser -Dealing with ignorant comments online -What quality of life means to me and my children -Upcoming weekend trip I have planned (without the hubby and kids)! -How it felt turning 36 this summer and officially entering my SELF LOVE era Listen to my episode on the Rarely Normal Podcast Listen to my story e...
Sep 03, 2024•29 min•Ep. 52
Send us a text I am back this week with a lovely conversation with the wonderful Jessica Patay, Founder & Executive Director of the non profit We Are Brave Together. In this episode we talk about the importance of respite as a caregiver, her experience as a mother and caregiver to her son, Ryan, who is living with Prader-Willi syndrome, how her non profit came to be, as well as the new anthology they recently released called "Becoming Brave Together," along with so much more. Happy listening...
Aug 20, 2024•59 min•Ep. 51
Send us a text For our very belated Father's Day episode I have my favorite baby daddy & life partner on, Donald to recap our incredible week at Disney for Stella's Make-A-Wish trip. We talk about some of our favorite things we did there and share some tips to other medical parents who are considering a MAGICAL trip to Disney. Happy Listening, friends! Feeling overwhelmed by the challenges of raising a medically complex child? Join me at the upcoming Powerful Medical Parenting Summit! We wil...
Jul 01, 2024•42 min•Ep. 50
Send us a text With the passing of Memorial Day weekend, we get to another anniversary of our D-Day. 5 years since our entire lives were flipped upside down. Join me during this mini solo episode as I share some things I wish I could go back and tell myself at the time of Roman's diagnosis, knowing what I know five years in. Resources & Links for this episode: Buy Soaring Together : Amazon , Barnes & Noble , or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Lear...
Jun 04, 2024•17 min•Ep. 49
Send us a text Welcome to the podcast, Megan Craft! Megan is a Speech Language Pathologist, wife and mother of two, who saw an unmet need in the community when she kept hearing from parents of her patients that their children were not represented in books. She felt called to do something about it, so she started her children's disability inclusive book series called Mission: Inclusion . Through her series she is working towards expanding diversity of book characters to include children with vary...
May 21, 2024•48 min•Ep. 48
Send us a text In honor of Roman being home for one whole year from our terrifying 2 month PICU stay, I decided to compile a list of all my must-haves while I am inpatient with my child. I also share other tips for holding onto your sanity while you are in the midst of a long and unexpected hospital stay with your child. Happy listening, yall! Shop all my inpatient must-haves below: https://www.amazon.com/shop/confessionsofararediseasemama/list/35OEIGSFEA1H4?ref_=aipsflist_aipsfconfessionsofarar...
May 07, 2024•40 min•Ep. 47
Send us a text I hope ya'll have a pen and paper to write down ALL the amazing travel tips this week's guest shares with us! Kristy Cook is a mother of four (one who is diagnosed with a rare form of Epilepsy) & the founder of Accessible Adventures. She believes that nature is meant for EVERYONE and is very passionate about accessible travel. This week she shares more about her family, how they got started in all their accessible adventures, and shares so many travel tips for families of medi...
Apr 16, 2024•1 hr 23 min•Ep. 46
Send us a text There are SO many complex emotions that come along with the question of potentially having more kids- ESPECIALLY if you have one (or in my case, two) that have severe medical needs. There are many pros and cons to weigh and it's something that has been weighing heavy on my heart lately as my husband and I (and our kids) get older. Join me for a good old fashioned solo episode this week as I share my internal struggle with this and what I have come to realize lately. Resources &...
Apr 03, 2024•22 min•Ep. 45
Send us a text This week I sit down with founder and host of The Rare Life, Madeline Cheney. She started her podcast in 2020, but the seed was planted 3 years prior—when doctors found troubling results at her 20-week ultrasound that pointed to a rare syndrome during her pregnancy with her second child. She and her husband Juston have two beautiful children, their 7-year-old daughter Wendy, and their now 5-year-old son Kimball. I have been a long time fan of the Rare Life, so I was so excited to ...
Mar 26, 2024•1 hr 22 min•Ep. 44
Send us a text This week I sit down with the beautiful, wise and talented, Alena Kupchella Gourley. Alena is a Licensed Social Worker, Clinical Hypnotherapist, psychic, medium and spiritual guide, who specializes in hypnotic healing and past life regression. Alena works with her clients to heal current or past relationship issues, physical, mental or emotional traumas or pain, such as phobias, anxieties, addictions, depression and anxiety, improving sports performance, stress management, weight ...
Dec 26, 2023•1 hr 1 min•Ep. 43
Send us a text It's been a whirlwind month, so I'm catching you all up on what's been going on with us lately during this episode. I also touch on some of the inevitable feelings of jealousy I felt over the holiday and how I was able to move past them. Happy Listening, friends! Resources & Links for this episode: Buy Soaring Together : Amazon , Barnes & Noble , or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more about our brave warriors: saveromanandste...
Dec 02, 2023•21 min•Ep. 42
Send us a text This week I have my friend, Brittany Markham, on the podcast to chat all things fundraising! Guys, I am in awe of all that Brittany has been able to accomplish since her son Damian's ASMD diagnosis. She has raised over a million dollars toward research for treatments for ASMD. Over. One. Million. Dollars. As I'm sure you all know, the pressure us rare parents feel to raise money for our children's diagnosis' on top of ALL the other stresses that come along with raising a child liv...
Oct 31, 2023•1 hr 23 min•Ep. 41
Send us a text I'm officially a workin' woman again, guys. Okay, well let me clarify- a PAID working woman :) Join me in this episode as I give some life updates on what we've been up to and the feelings and emotions I have had as I made the decision to go back to work (super part time). Happy listening, friends! If you feel called to donate to help the innocent children who are being affected in the Gaza and Israel Emergency you can do so HERE . Donate to the International Red Cross HERE . Reso...
Oct 23, 2023•26 min•Ep. 40
Send us a text Have you experienced FOMO as a special needs parent? Of course you have. We all have. In fact, for us, it's a daily struggle. There are SO many more things for us to consider when asked to do something: is it handicap accessible? Will it be too much stimulation and trigger more seizures? How many people will be there? Will they be exposed to too many germs? What if they get sick again and end up back in the hospital? Will there be somewhere where we can change them? This week I re...
Oct 06, 2023•24 min•Ep. 39
Send us a text Has this thought ever crossed your mind as a parent with a life limiting illness or condition? You are not alone. I recently had a listener reach out to me and suggested this as an episode topic (thanks Sara!). She said she has struggled with the thought that somehow her son's terminal diagnosis was her "karmic wake up call" to be a better person and couldn't shake the feeling that maybe some poor choices she made in her 20's led her to this. Am I a believer in karma? Absolutely. ...
Sep 03, 2023•25 min•Ep. 38
Send us a text Whew! The past few months have been BUSY. I'm going to catch you guys all up on this episode. As always, thanks for joining me on this wild ride. Happy listening, friends! Resources & Links for this episode: Buy Soaring Together : Amazon , Barnes & Noble , or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop Learn more about our brave warriors: saveromanandstella.com Support our family: GoFundMe Follow us! Instagram: @confessionsofararediseasemama Ti...
Aug 15, 2023•26 min•Ep. 37
Send us a text There was a time, back at the beginning of our children's diagnosis, where we thought traveling was just no longer an option for us. We just didn't see how it was doable to ever go on a vacation with not just one, but two children in wheelchairs (and A LOT of medical equipment). Just the thought of it alone was incredibly overwhelming. As we gear up for our third family road trip with our kids next week, I wanted to share some of my top travel tips with you on ways to decrease you...
Jul 14, 2023•24 min•Ep. 36
