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
Etched in my memory
• June 2, 2023 • Leave a CommentPosted in Diagnosed
Tags: acceptance, challenge, eli and ella, Eliandellasprayerwarriors, Fear, future, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, Miracle, MLD, never give up, purpose, rare disease, sadness, sorrow, special needs, strength, trials, warriors
Be happy…so I don’t have to be uncomfortable
• October 12, 2022 • Leave a CommentPosted in Diagnosed, Life after diagnosis, living, My journey
Tags: acceptance, blog, changes, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, family, fitting in, gene therapy, God, journey, joy, life, Love, metachromatic leukodystrophy, MLD, sorrow, special needs, strength, trials, truth, uncomfortable, warriors
Philly for the day and another lesson in never giving up – Jan 10
• January 11, 2021 • Leave a CommentPosted in Day by day 2021, Diagnosed
Tags: 2021, art museum, change, eli vivian, eliandella, gift, gratitude, growth, happiness, lessons, leukodystrophy, live, lucky, metachratoc leukodystrophy, Miracle, my4es, never give up, pats steaks, Philadelphia, Rocky Balboa, struggle, thankful, trials
Living, learning and loving
• February 22, 2015 • Leave a CommentPosted in Back to life and living
Tags: gene therapy, journey, learn, live, Love, metachromatic leukodystrophy, MLD, people, trials
