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
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
He was once like you
• February 16, 2023 • 2 CommentsPosted in Diagnosed
Tags: acceptance, changes, day by day, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, gene therapy, God, growth, happiness, hope, inclusion, journey, joy, Love, memories, metachromatic leukodystrophy, MLD, moving mountains, never give up, normalcy, past, special needs, sports, strength, thankful, warriors
Let’s be honest
• August 3, 2020 • Leave a CommentPosted in Diagnosed, Life after diagnosis, living, My journey
Tags: anxiety, eli and ella, Eli and Ellas Prayer Warriors, family, future, God, joy, learn, learning, life, Love, memories, pain, past, purpose, sadness, special needs
When looking backward gets you nowhere fast
• October 12, 2014 • 2 CommentsPosted in Back to life and living
Tags: acceptance, eli, ella, future, helpless, life, metachromatic leukodystrophy, MLD, past, presrnt
Fear Not 