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
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
Dream a little dream
• June 26, 2019 • 2 CommentsPosted in Along the way
Tags: Dream come true, Eli and Ellas Prayer Warriors, God, leukodystrophy, metachromatic leukodystrophy, MLD, questioning, sorrow
