45 episodes

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.

Confessions of a Rare Disease Mama Jillian Arnold

    • Kids & Family
    • 5.0 • 39 Ratings

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.

    My inner debate on a third child and what I have come to realize

    My inner debate on a third child and what I have come to realize

    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/

    • 21 min
    Talking about all the things with The Rare Life's Madeline Cheney

    Talking about all the things with The Rare Life's Madeline Cheney

    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/

    • 1 hr 22 min
    Turning grief and trauma into growth and healing with Past Life Regression Therapist, Alena Gourley

    Turning grief and trauma into growth and healing with Past Life Regression Therapist, Alena Gourley

    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/

    • 1 hr
    Catchup/ dealing with the holiday blues

    Catchup/ dealing with the holiday blues

    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/

    • 21 min
    How to fundraise like a BOSS with special guest and fellow rare mama, Brittany Markham

    How to fundraise like a BOSS with special guest and fellow rare mama, Brittany Markham

    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/

    • 1 hr 22 min
    Life Update

    Life Update

    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/

    • 26 min

Customer Reviews

5.0 out of 5
39 Ratings

39 Ratings

Faery77dust ,

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.

Salsara320 ,

Best rare disease parent podcast out!

Kudos to Jillian for taking the time to put this podcast out into the world. As a mama of a medically complex kiddo with a rare, terminal genetic disease, it means so much to have someone out there who gets it. Her words and those of her guests make me feel so much less alone.

I also love the realness and authenticity of the show. Every episode is relatable hits perfectly in the moment. No topic is too small. Keep them coming!!

KJE85 ,

Thank you

Fellow rare disease mama ❤️ sharing your story has been such a blessing to hear! Thank you for taking the time to do this!

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