Confessions of a Rare Disease Mama

Send us a Text Message. 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_aipsfconfessionsofararediseasemama https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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 medically complex children. Happy listening, friends! Learn more about Kristy and her family's travel adventures: https://accessibleadventures.net/index.html#/ Follow them on instagram: @accessible.adventures Blog post for most accessible east coast beaches in US: https://wonderswithinreach.com/2023/05/most-accessible-beaches/ $7 Track Chair Google Map: https://accessibleadventures.net/product.html#/ Universal Changing Table map: https://www.changingspacescampaign.com/ https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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. https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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 talk with Madeline and learn more about her and her family's unique journey. We talk about ALL the things including what is was like during her pregnancy knowing her son had a rare condition, our not so great first encounters with Palliative Care, the family dynamics between a disabled and non disabled siblings, family planning/IVF, and so much more. We also touch on a few of my favorite episodes of The Rare Life which are linked below for you all to check out! Happy listening, ya'll! https://therarelife.org/ https://www.instagram.com/the_rare_life/?hl=en https://www.facebook.com/p/The-Rare-Life-Podcast-100039719031110/ Episode 130: Fearful of Child Loss/Anticipatory Grief Ep. 95: The Parable of the Pain Scale Ep. 99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins Ep. 19: The Story of Claire https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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 loss and a positive body and food relationship. Self-Love, Self-Acceptance and Self-Forgiveness is the driving force behind her work. After Roman's diagnosis, I dove into all sorts of different therapies- anything to help me get past all the depression and anxiety I was feeling. My sessions with Alena have been so healing and transformative for me, so I'm so excited to share our conversation with you all. The way Alena has uses the grief and trauma she has experienced in her life as a way to grow and evolve spiritually and continue to help others heal is so inspiring to me. *Trigger warning for this episode: child loss, stillbirth Learn more about Alena and the services offered at http://www.celebrateeverystep.com Find her podcast at https://celebrateeverystep.com/blog/ You can find more content and community interaction at http://www.facebook.com/celebrateeverystep And on http://www.instagram.com/celebrateeverystep Free guided meditation and hypnosis sessions at http://www.youtube.com/user/alenakg Schedule a free consult call and Find upcoming sessions, classes and courses at https://celebrateeverystepscheduling.as.me/ https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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! https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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 living with a rare disease is no joke. This episode we talk about (rare disease) mom guilt, what it's like to witness our kid's regression, how Brittany manages it all, fundraising expectations, and her journey with her son Damian's diagnosis. Happy listening, friends! Follow along Damian's journey: https://www.savedamian.com/ Youtube Instagram Facebook TikTok GoFundMe Listen to our other episode with fellow ASMD mama, Taylor Sabky: https://podcasts.apple.com/us/podcast/family-planning-after-a-diagnosis-with-special/id1621317686?i=1000589245647 https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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. https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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 reflect on a couple significant FOMO experiences I have had lately with my kids, how I handled them, and how I refocused that grief into gratitude. Happy listening, friends! Pre-order your CAREGIVER COMPASS here! https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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. HOWEVER, I definitely do NOT think that our children's diagnosis' are just bad karma coming for us. I cannot lie though; the thought did cross my mind at the beginning of our journey. This episode I dive deep into this idea and all my thoughts surrounding it. Enjoy! Do you have thought's on this topic? Or maybe you have another topic you would love to hear me cover on a future episode? Contact me HERE. I'd love to hear from you! If you are loving the show, please take a moment to drop a rating and review below! Learn more about May We Help HERE. Listen to Jillian's speech about the impact they have had on her family HERE. Learn more about Visionaries + Voices HERE. https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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! https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. 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 your pre-trip anxiety and ensure the smoothest trip possible with your kiddos. Traveling with medically complex kids may take a little more planning for us and strategic packing, but it's definitely doable! https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. Welcome back! Join me this week as I fill you all in on what's been happening in our life over the past couple months (and why my stress and anxiety has been through the roof lately), the importance of taking care of your mental health as a caregiver parent, and why I decided it was time to start taking my anti-depressants again. https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. Happy (almost) Father's Day to all you incredible Dad-vocates out there. This week I spoke with one exceptional Father, Daniel DeFabio, that saw the injustice of the rare disease world after his son Lucas, was diagnosed with Menkes Disease and decided to take action. Daniel has made a career out of spreading awareness and honoring his son's memory as a rare disease advocate. He co-founded Disorder, the rare disease film festival, as well as the Disorder Channel, is a writer and blogger in residence for Courageous Parents Network, and is the Director of Community Engagement at Global Genes. I truly appreciated how open, honest, and real he was during our conversation. We talk about everything from diagnosis, stages of grief, his career transition to advocacy, how he's making an impact on the rare disease world, what role hope plays in his life, and so much more. Happy listening, friends! Daniel's social links: https://www.facebook.com/rarediseasefilmfestival https://www.instagram.com/disorderrarediseasefilms/ https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/ https://twitter.com/DisorderRare Read Daniel's thoughts on hope here. Learn more about the Disorder Channel here. Learn more about Global Genes here. https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. It's hard to believe that this past weekend has marked FOUR whole years of being on this rare journey. I have been reflecting a lot the past week on how much my life has changed over the past four years and everything I have learned since becoming a rare parent. Join me during on episode as I discuss some of my top take aways of navigating this crazy beautiful life. Listen to Jillian chat with the ladies of the Nari Nest podcast here: https://podcasts.apple.com/us/podcast/ep-4-self-care-perspective-of-a-rare-disease-mama/id1687855913?i=1000614641791 https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. Are you wondering how you could best support the parent in your life who's child may have just been diagnosed with something life altering or is dealing with a lot of complex medical issues? You are not alone! This episode I share all the great responses I got from listeners after taking to social media to pose this question as well as sprinkle in some of our own personal experience and what we found to be most helpful when we were stuck in serious survival mode with our kids after receiving their diagnosis'. Feel free to share this episode with any friends or family in your life who want to be there for you, but just don't know what kind of support you need. Happy listening, friends! https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. I am back from my unexpected break and I am here to catch you all up on what has been happening in our family the past two months. For those of you who are unaware, our son, Roman, just got back home after a 55 day stay at our children's hospital (49 of which were spent in the PICU). He was intubated two times during his hospitalization (yes, two) for a total of 19 days while battling viruses that turned into a viral pneumonia and then developed a bacterial pneumonia which led to a very scary episode of septic shock. This was a pretty emotional episode for me to record, as this whole situation is still pretty fresh so I do want to put a *content warning* in for those who are triggered by hospitals, ICU, or just have medical trauma in general. Although this experience was the toughest and scariest that our little family has had to endure, it serves as a good reminder that even during our darkest times, there is always light to be seen if you look close enough. We are overjoyed that Roman is back home now and doing well. It is nothing short of miraculous! Thank you all for bearing with me as we contiunue to settle back in to "normal" life after having everything on pause during Roman's recovery! Watch our reel of the day we got to bring Roman home! https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. Welcome back (and happy Valentine's Day)! This week I dive deep into the importance of surrounding yourself (and your child) with the right team of medical professionals. I truly believe that parents and doctors are a collaborative team (especially when it comes to caring for our rare disease/medically complex kiddos) which is why it is VITAL that you are able to work well together. Our children's lives (quite literally) depend on it. Let's get into it! https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. This week I sat down with Angel Aid Operations Manager and fellow rare mama, Megan Loden. Megan talks all about her experience as a Mom with identical twin girls both living with Familial Cerebral Cavernous Malformations and everything that comes along with it. We discuss career transitions after a diagnosis, the important role social media plays for a rare disease parent, how a rare diagnosis can affect your relationship with your spouse, and finding the humor amongst the heaviness. Megan is also currently working on the HODA Board of Directors in Operations in her “free” time. Learn more about ANGEL AID here. Follow Megan on Facebook, or Instagram and check out her website https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

Send us a Text Message. Welcome back! This was a BIG week for us... Our baby turned three! Hear all about Stella's birthday recap + my word(s) for 2023: LETTING GO. I want to go into this next year feeling MUCH lighter and this episode I tell you ALL the ways I plan on doing that. Happy listening, friends! PS. My apologies for all the background/fumbling around noises during this episode. At times it sounds like I am quite literally wrestling with the mic, so I will be much more conscious of this when I record the next one :) https://www.confessionsofararediseasemama.com/ Learn more about my children's fight with ASMD and donate to our cause: https://www.saveromanandstella.com/ Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/