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
The journey of many miles, tears and smiles – Thank you Milan
• April 28, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, challenge, clinical trial, day by day, eli and ella, Enjoythemoment, family, Fear, gene therapy, God, goodbye Italy, grateful, gratitude, Hero, hope, hospital, Italy, journey, joy, life, Love, memories, metachromatic leukodystrophy, Milan, Milano due, miracles, MLD, never give up, normalcy, rare disease, sadness, sorrow, special needs, strength, thankful, warriors
A good day – Day 3 in Milan
• April 18, 2023 • 4 CommentsPosted in Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: appreciation, changes, clinical trial, day by day, eli and ella, Eliandellasprayerwarriors, family, friends, gene therapy, gift, God, gratitude, growth, happiness, healing, Hero, hope, hospital life, journey, learning, lessons, life, live, memories, metachromatic leukodystrophy, Milan, miracles, MLD, Mother Nature, never give up, past, purpose, rare disease, special needs, spring-ford, strength, struggle, thankful, warriors
For a moment, not much else seemed to matter – Day 2 in Milan
• April 17, 2023 • 4 CommentsPosted in Along the way, Diagnosed, Diagnosis, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, changes, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, hope, journey, joy, learning, life, Love, luckiest of the unlucky, memories, metachromatic leukodystrophy, Milan, miracles, MLD, never give up, rare disease, San Raffaele, sorrow, special needs, strength, warriors
Fear Not 