Tag: Rare Disease

Dear Colin Farrell-Group Home Story

When we moved our daughter Jess into a group home at age 25, it felt like we were giving up. 💔

But as Colin Farrell shared about his son James—what’s the alternative?
If something happened to us tomorrow, where would she go? Who would ensure her safety, dignity, and quality of life?

Colin’s words resonated deeply with me. Like him, we realized that planning —while we were healthy—was an act of love.

Today, Jess has:
✨ A home in her community
✨ Housemates who feel like sisters
✨ A life full of connection, friendship, and independence
And we are still at the center of her world—just in a different way.

To other parents navigating this decision: you’re not giving up. You’re building the future your child deserves.

UNIQUE Little Red Book: Our Daughter, with a Severe Intellectual Disability, Story in an International Book 📕

A rare genetic diagnosis gave us a name, a global community—and a spot in the not-so-little UNIQUE Red Book.

Resilience, Community and Family Stories – Heart of the Matter

Okay, let me explain Vick Squared. First, it’s Vickie (me) and Vicki (Atkinson, who is also a Ph.D, so she has even more letters! One of the hosts). Wynne is the Heart of the Matter ( HoTM ) co-host and an enthusiast of endurance sports. They both host Heart of the Matter, they focus on the importance of intergenerational wellness and healing. They believe writing and storytelling can build resilience for the future by exploring what matters most in life: connection, laughter, empathy and authenticity. 

Buffalo News Version- Mh.D. or Motherhood can be a Series of Formidable Challenges~

“Stop the presses! My article made the Buffalo News, My View column! 🌟 If you’re reading this twice… well, it’s just that exciting! 🎉 Sorry for the déjà vu!” ;0)

Jessica’s Friend Network

Facing life’s curveballs is easier with friends. These women embraced Jessica into their circle, turning it into her very own Friend Network! #RaisingJess #Friends #Disability #Inspiring #Rare Disease #Family
#RaisingJess #Friends #Disability #Inspiring #Rare Disease #Family

The Story of a Late Diagnosis and Writing Your Memoir

🎙️ New Episode Alert! 🎙️ “The Gift of a Late Diagnosis” and a heartwarming reading of “The Gift of Grandparents” at minute 21:09 – Plus the journey and joy of writing your own story. #Podcast #LateDiagnosis #Grandparents #MemoirWriting #Storytelling #LetsTalkMemoir #RaisingJess #RonitPlank #Family #Disability #SpecialNeeds #Humor #RareDisease #Inspirational

Candlelit Glow of Remembrance and The Empowering Fist Pump

My beloved Mom, DiaNNe (with two N’s, or you will hear it!), battled Alzheimer’s. This year is my mom’s fourth Yahrzeit, the anniversary of her death. The date is based on the Hebrew calendar, a lunar datebook with 29 monthly days alternating with 30 days. It’s too confusing for me to calculate, so I rely […]

Letting Go: The Group Home Decision

This is our group home story. A decision woven with uncertainty, love, and, ultimately, acceptance. Was the group home decision also a decision of Letting Go? These are frequent questions I receive from families and podcast hosts, and a story worth sharing. How we went from It’s Never Happening to a Leap of Faith. An […]

Happy Anniversary, Mitch

Happy Anniversary, Mitch. Today, December 1, 2023, is our 44th wedding anniversary. Mitch and I were married in 1979. I remember when our parents were married for 25 years, and we thought that was unbelievable. 25 years sounded like an eternity, considering we were married for only 6-months. And now our marriage is 44 years, […]

Music Therapy Becomes A Love Language

Music is our daughter Jessica’s love language. She speaks it fluently. Jess is 41 years old, nonverbal, and has a rare genetic deletion (1Q 43-44). She lives in a group home with five other women who have become family. (Article in Today’s My View ) Jacob is Jessica’s music therapist and part of a local […]