When we asked Jessica Patay for some resources to help guide those just beginning to face a life with a rare disease, she had so many to share that we had to give her her own page. It should come as no surprise since she founded We are Brave Together and hosts the Brave Together podcast and this year published “Becoming Brave Together: Heroic, Extraordinary Caregiving Stories from Mothers Hidden in Plain Sight”. She’s mom to Ryan who lives with Prader-Willi Syndrome. She was also a speaker at the Global Genes Summit in 2022. If you haven’t read our Beginner’s Guide to Rare Disease, you should read that first.
From Jessica Patay:
People who have children who are newly diagnosed with a rare disease are turning to Global Genes for answers and for a valuable, supportive community. What is the very first thing that parents are seeking? Most likely, they are searching for treatments, experts, research, or experienced fellow parents. Perhaps this diagnosis impacts their child’s education and a 504 or IEP is needed. Perhaps they need someone to help them navigate the nuts and bolts behind the scenes of caregiving. Like how to access the services, supports, medications or medical supplies their child needs. There are experts who can help, and Expert Parents, seasoned moms and dads who have walked this path ahead of you, who can help. You are not alone.
Jessica Patay, rare mom and founder of Brave Together
Books I would recommend right away:
- Kelley Coleman’s book “Everything No one Tells You About Parenting a Disabled Child”
- “Real Self-Care” by Pooja Lakshmin, MD
- “How to Know a Person: The Art of Seeing Others Deeply and Being Deeply Seen” by David Brooks
- Anything written by Brene Brown
- “The Power of Fun” by Catherine Price
- “Radical Acceptance” by Tara Brach
- “Self-Compassion” by Dr. Kristin Neff
Why all the self-help stuff?
Why not legal books about rights and laws and special needs trusts? While, yes, that is helpful, too, I feel strongly that parents MUST hear from the beginning of their journey, that they MUST take care of their own mental health. They deserve it, and it IS a priority for the long-haul of caregiving.
Down the road
Maybe a year or two later, I would recommend perhaps reading some memoirs by mothers or parents of children with neurodiversity, special needs, rare diseases, disabilities or medical complexities. Some of my personal favorites:
Becoming Brave Together: Heroic, Extraordinary Caregiving Stories from Mothers Hidden in Plain Sight
- Becoming Brave Together: Heroic, Extraordinary Caregiving Stories from Mothers Hidden in Plain Sight (an anthology from We Are Brave Together)
- “Your True Self is Enough” by Susanna Peace Lovell
- “A Hero’s Journey” by Margaret Webb
- “Aching Joy” by Jason Hague
- “Surrender” by Nicola Irvine
- “The Unlikely Village of Eden” by Emma Nadler
There are many, many excellent podcasts for the rare disease community! Too many to name.
If I were to look at our podcast and recommend a few that would be inspirational to newly diagnosed parents, here is where I would begin:
Search the Brave Together Podcast for:
- Ep 37: Conquering Guilt & Shame
- Ep 127: Practicing Self-Compassion
- Ep 159: Comparison Within the Disability Community
- Ep 163: Community Is Everything
- Ep 165: Will a Caregiver Support Group Make Me More Depressed?
- Ep 175: Diagnosis Isn’t a Choice, My Martyrdom Is
- Ep 181: How do I Have Fun When My Life is So Serious?
UPDATE: Jessica just added this to her blog
The 5 Things I Wish I Was Told Right After My Child Was Given a Diagnosis
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