Confessions of a Rare Disease Mama

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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! 

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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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

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

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 :) 

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

As 2022 winded down, I compiled a list of our top moments of the year that I share with you in this episode. Looking back on the past year, I realized that we have accomplished a hella-lot as a family and I am taking this moment to reflect on it all. I have high hopes that 2023 will have even more good things in store for us and our babies!

I'd love to hear some of your amazing moments or big accomplishments from the past year! DM me on Instagram @confessionsofararediseasemama or through the contact page on my website to submit some of your most special moments of 2022 and I will read them during the next episode!

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

My apologies for the late upload! Life has been crazy the past week, as I'm sure it's been for all of you as well- all that holiday madness, right?! This episode I discuss how I handled some triggering feelings of grief and sadness that came over me recently after I found out about the passing of a little girl in the rare disease community. 

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

Welcome back! This week I catch you guys up on what's been going on in our lives over the past seven days (SPOILER ALERT: Roman FINALLY started his experimental med!) 

December can be a stressful and VERY busy month for everyone (but most especially us, special needs parents), so I also discuss how our family is making it a priority this month to do plan AND execute some fun and festive activities. 


Learn more about A Kid Again: https://akidagain.org/

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

My apologies for this episode being a little late- I'm getting over my third (yes, third) illness of the month (when will it end?!)

This week I sat down with a dear friend of mine, Taylor Sabky, to talk all things IVF and family planning after a diagnosis. Taylor is a teacher and fellow ASMD mama whose brave warrior, Purnell, gained his wings back in 2019. Taylor is someone I have looked up to as a rare mother and sought out guidance from in the early days of Roman & Stella's diagnosis journey. What her and her family has been able to accomplish in regards to treatment advancement for ASMD and fundraising (they raised $750,000 in ONE month-yes, you read that right- ONE MONTH) has been nothing short of incredible. She continues to honor her son's memory by staying very active in the rare disease community and through her advocacy work by sitting on the board of the National Niemann Pick Disease Foundation.

Taylor tells us about the decision her and her husband made to continue to grow their family via IVF after receiving Nell's diagnosis and what the process was like being pregnant while simultaneously taking care of her medically complex child and all the feels that went along with it.

Learn more about the National Niemann Pick Disease Foundation and all the amazing work they do here.

Learn more about Purnell's brave fight with ASMD (otherwise known as Niemann Pick Disease Type A) 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

Adenovirus, COVID, RSV.... Will will it end?! Join me as I recap our crazy Thanksgiving week.



It's #GIVINGTUESDAY! If you are in a giving mood, please check out some foundations that are very near and dear to my heart:

Donate to Wylder Nation Foundation to help in the fight for my children's lives: 
https://wyldernation.org/join-the-fight/
you can also donate through our Go Fund Me:
https://www.gofundme.com/f/save-roman-and-stella

Donate to Parental Hope:
https://parentalhope.org/donate-now/

Donate to Building Blocks for Kids:
https://bb4k.org/

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 was planning on talking about something totally different this episode and then my husband tested positive for COVID and my plans changed :)

We have successfully been keeping this dreaded virus out of our house for the past three years.... until now. The thought of our kids getting COVID has haunted us since this mess all began (much like every other parent of medically fragile children). This episode I talk all about how you can only control so much when it comes to your children's health and at a certain point you have to relinquish that control, remind yourself that you've done all you can do to protect your kids and accept that whatever will be, will be!


#GIVINGTUESDAY is coming up next week and there are a couple foundations that are VERY near and dear to my heart:

Donate to Wylder Nation Foundation to help in the fight for my children's lives:
https://wyldernation.org/join-the-fight/donate.html
you can also donate through our Go Fund Me:
https://www.gofundme.com/f/save-roman-and-stella

Donate to Parental Hope:
https://parentalhope.org/donate-now/

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 was so eager to sit down and chat with my special guest this week, the incredible Lauren Lowery. Lauren is a wife, mama to two (one of whom is diagnosed with the ultra rare disease, Aicardi-Goutieres syndrome), ICF certified and trauma-informed life coach for special needs moms, and podcast host of Overcome the Overwhelm. What I love most about Lauren (besides her soothing and cheerful "disney princess-esque" voice) is her ability to get to the root issues of WHY some of us are stuck living in survival mode. Through her 12 week coaching program, she helps other moms get out of survival mode and into a life that is easier, peaceful, and balanced.

I also share some SUPER exciting news that we received last week!

Happy listening!

Learn more about Lauren's 12 week course here.
Follow Lauren on insgram: @lauren_nia_lowery
Listen to Overcome the Overwhelm for Special Needs Moms

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 ...