Pain and beauty, blended together
• July 5, 2026 • 2 CommentsPosted in Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, anxiety, anxious, blog, caregiver, challenge, change, changes, choices, clinical trial, day by day, demons, depression, eli and ella, Eli and Ellas Prayer Warriors, eli vivian, enjoy the moment, Enjoythemoment, family, Fear, friends, future, gene therapy, God, gratitude, grief, happiness, healing, Hero, hope, inclusion, Italy, journey, keep going, learning, lessons, letting go, leukodystrophy, life, live, live like Eli, Love, meditation, metachromatic leukodystrophy, Milan, miracles, MLD, my4es, never give up, normalcy, one day at a time, past, purpose, Questions, rare disease, recovery, retreat, sadness, sorrow, special needs, special needs parent, special needs parenting, spring-ford, strength, struggle, surrender, thankful, trials, trust
It’s not your fault… and it’s not mine either
• March 1, 2025 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, anxiety, challenge, challenging, clinical trial, day by day, depression, eli and ella, Eli and Ellas Prayer Warriors, family, forgiveness, gene therapy, God, Hero, journey, joy, life, Love, memories, MLD, never give up, normalcy, parenting, rare disease, sorrow, special needs, strength, warriors
Sunday Sept 22 – beginning to teach Eli meditation
• September 27, 2024 • Leave a CommentPosted in Back to life and living, Diagnosed, Joe Dispenza retreat, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, anxiety, breathing, challenge, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, family, Fear, gene therapy, God, gratitude, healing, Hero, hope, joe dispenza, journey, joy, learning, life, Love, meditation, memories, MLD, never give up, normalcy, Orlando, patience, rare disease, retreat, special needs, strength, warriors
Sept 20 2024
• September 27, 2024 • Leave a CommentPosted in Along the way, Joe Dispenza retreat, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, anxiety, challenge, clinical trial, day by day, eli and ella, family, gene therapy, God, grateful, gratitude, healing, hope, joe dispenza, journey, joy, learning, life, Love, meditation, MLD, never give up, normalcy, Orlando, rare disease, retreat, sorrow, special needs, strength, warriors
Living “50 First Dates”
• July 31, 2024 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: 50 first dates, acceptance, challenge, changes, clinical trial, day by day, eli and ella, family, Fear, gene therapy, God, gratitude, Hero, hope, journey, joy, life, living a movie, Love, memories, metachromatic leukodystrophy, MLD, never give up, rare disease, sorrow, special needs, special needs parenting, strength, thankful, warriors
When a picture tells a thousand words
• June 12, 2024 • 2 CommentsPosted in Along the way, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, challenge, changes, class of 2024, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, enjoy the moment, family, Fear, gene therapy, God, graduating, graduation, gratitude, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, parenting, persevering, rare disease, sorrow, special needs, strength, warriors
Building more than good basketball players
• January 18, 2024 • Leave a CommentPosted in Along the way, Back to life and living, Day by day 2021, Diagnosed, Life after diagnosis, living
Tags: acceptance, basketball, challenge, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, family, gene therapy, God, gratitude, hope, inclusion, journey, joy, life, Love, metachromatic leukodystrophy, MLD, never give up, normalcy, rare disease, special needs, spring-ford, strength, team building, warriors
When trusting your gut leads you to the unthinkable
• September 19, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, the ride of my life
Tags: CHOP, clinical trial, day by day, drew Barrymore, DuPont, eli and ella, Eli and Ellas Prayer Warriors, every day heroes, Fear, finding answers, gene therapy, God, hope, journey, life, Love, metachromatic leukodystrophy, MLD, neurologist, never give up, rare disease, special needs, strength, terminal illness, the today show, trusting your intuition, warriors
A moment we had only HOPED we would see
• August 31, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, anxiety, challenge, changes, clinical trial, day by day, eli and ella, family, gene therapy, God, gratitude, hope, journey, joy, learning, lessons, life, Love, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, parenting special needs, parents magazine, rare disease, sadness, senior year, special needs, strength, thankful, today show, warriors
We are not different, we are unique
• June 22, 2023 • 2 CommentsPosted in Diagnosed, Life after diagnosis, living
Tags: acceptance, angel, angels, changes, clinical trial, day by day, eli and ella, Enjoythemoment, family, friends, gene therapy, God, gratitude, happiness, healing, Hero, hope, journey, joy, learning, lessons, live, Love, memories, metachromatic leukodystrophy, Miracle, MLD, never give up, normalcy, purpose, rare disease, special needs, spiritual, strength, teaching, thankful, unique, warriors
Fear Not 