Confessions of a Rare Disease Mama Jillian Arnold

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/

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/

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/

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/

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/

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/