Our diagnosis journey

29 min • 19 maj 2022

Welcome to my very first episode! Everyone in this wild world of rare disease has a diagnosis story and this is ours.

Learn more about my children's fight for their lives: http://www.saveromanandstella.com

http://confessionsofararediseasemama.com

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 ...

Senaste avsnitt

Our diagnosis journey

Senaste avsnitt

BONUS EP: What to do when the world feels like too much

Life Lately: Solo Parenting, Sick Kids, & School Plans

Creative Fundraising in the Rare Disease Community – Global Genes Panel Recording

Life Lately: A Rare Mama Catch-Up

Navigating Resources and Grants with Advocacy Abby

Real Food Blended Diets Made Simple: A Conversation with Registered Dietitian Hilarie Geurink

A Mother’s Legacy: Lauren Williams’ Commitment to GRIN1 Families in Honor of Her Son

Goals for 2025, Tackling Winter Blues, and SNOWMAGEDDON

A Rare Mama’s Reflections on the Holiday Season with Yours Truly

Turning Pain into Purpose: Rare Mama, Ashley Haywood’s Advocacy for Sanfilippo Syndrome

Special Family Transitions with Special Needs Divorce Coach, Mary Ann Hughes

Mini Ep: My EXCITING, BIG Announcement!

The Eight Different Types of Advocacy with Director of Community Engagement of Global Genes, Daniel DeFabio

Officially entering my self love era

Prioritizing your mental health as a caregiver with Founder and Executive Director of We Are Brave Together, Jessica Patay

Our MAW Disney trip recap with special guest (& my better half), Don Arnold

Mini solo episode: If I could go back in time

Mission: Inclusion with Speech Language Pathologist & inclusive children's book author, Megan Craft

How to get through a long hospital stay & my inpatient must-haves

All things TRAVEL with Accessible Adventures Founder, Kristy Cook

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

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

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

Catchup/ dealing with the holiday blues

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

Life Update

When the "FOMO" starts creeping in as a medical parent

Is my child's diagnosis a "karmic wake up call" from the universe?

Coffee & catchup

My top travel tips for road tripping with your medically complex child

Ain't no shame in my anti-depressant game

A Father's Perspective with Rare Disease Dad & Director of Community Engagement for Global Genes, Mr. Daniel DeFabio

Top lessons I have learned in my first four years of being a rare disease parent

How to best support the caregiver parent in your life

Where I have been the past two months

How to find and manage the right care team for your medically complex child

Career transitions and life as a rare disease mom to twins with Angel Aid Cares Operations Manager, Megan Loden

The word(s) I will live by in 2023

Cheers to a new year! Our top moments of 2022

Walking through that pesky tunnel of grief

How to fit in some fun during the busy month of December

Family planning after a diagnosis with special guest and fellow rare mama, Taylor Sabky

A COVID-style Thanksgiving

Learning when to let go of control (or as my Grandma always said, "que sera sera!")

Stepping out of survival mode and putting your best self forward with special guest: podcast host and life coach, Lauren Lowery

'Tis the season for colds and flus

Our BIG news

Making the leap into a healthier lifestyle with Nutrition Coach and Personal Trainer, Sabrina Miller

Celebrating every inch-stone!

One family, two different rare diagnosis' with special guest (and a TRUE rare disease warrior mom) Nadia Slatch

Stream of consciousness/ Roman turns FOUR

Reminiscing about our big Florida trip with special guest: my husband, (and car-packer extraordinaire) Don Arnold

Life update/stream of consciousness and how I'm learning to let grief & joy co-exist

Best in class caregiving with mejo app founder Ryan Sheedy

*BONUS EPISODE* How to deal with ignorant comments

We made it to the double digits! Life update + Special Announcement

Life Update/Stream of consciousness

The 5 minute journaling techniques I use to help declutter my brain

How to (kindly) cut ties with a therapist or doctor who is no longer serving your child in the way they need

How to make connections and utilize all your resources as a rare disease parent

Father's Day Episode with extra special guest: my husband (AKA: Dadvocate-EXTRAORDINAIRE)

How to continue to nurture your relationship with your spouse as a special needs parent

Trusting your "parental instincts"

The post-holiday funk

Our diagnosis journey

BONUS EPISODE How to deal with ignorant comments