50 episodes
Confessions of a Rare Disease Mama Jillian Arnold
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- Kids & Family
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5.0 • 41 Ratings
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Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent.
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Our MAW Disney trip recap with special guest (& my better half), Don Arnold
Send us a Text Message.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 Summ...
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Mini solo episode: If I could go back in time
Send us a Text Message.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.Get your FREE Positive Affirmations for the Medical Parent PDF here!https://www.confessionsofararediseasemama.com/Learn more about my children's fight with ASMD an...
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Mission: Inclusion with Speech Language Pathologist & inclusive children's book author, Megan Craft
Send us a Text Message.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...
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How to get through a long hospital stay & my inpatient must-haves
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_aipsfconfess...
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All things TRAVEL with Accessible Adventures Founder, Kristy Cook
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 famil...
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My inner debate on a third child and what I have come to realize
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.&nbs...
Customer Reviews
So real and enjoyable to listen to
Stumbled upon Jillian on social media via another medically complex parent and then started listening to her podcast. I started from the beginning and have been binging! I love how real she is about her struggles but also the joys. Love hearing the updates about her kids and the progress they’re making
Jillian is the Best!
I absolutely love listening to this podcast! Jillian talks about topics that are so relatable. It’s so nice to know that another mom is feeling the same way as me. It’s hard to explain our situation to others who don’t have special needs kids, Jillian makes me feel so seen! Her episode on wondering if our kids diagnosis was karma coming back from some things we had done earlier in life hit me right in the core, I can’t tell you how many times I have felt that.
Incredible Rare Disease Podcast
Jillian is an amazing rare disease advocate for her beautiful children and puts a lot of thought into each of her podcasts. I wish podcasts like hers were available when my son was diagnosed. It’s so reassuring to hear experiences of other rare parents because it’s a tremendously different, challenging, emotional, and life-changing journey parenting a child with a life limiting illness.