Confessions of a Rare Disease Mama

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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.

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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
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
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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!


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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
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

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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!

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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.

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
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

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
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

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! 

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
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

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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. 

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
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

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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.

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
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

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

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
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

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!

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
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...

Send us Fan Mail

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!

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
  • TikTok: @rare_mama
  • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
• Get your FREE Positive Affirmations for the Medical Parent PDF here!
• Shop our ...