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
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
The many joys of the game
• December 17, 2023 • 2 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, basketball, challenge, changes, day by day, eli and ella, fitting in, game, God, gratitude, Hero, hope, inclusion, inclusivity, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, parenting, Questions, rare disease, special needs, strength, team, warriors
“Let there be no darkness in your heart“
• November 21, 2023 • 2 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, My journey, sobriety, the ride of my life
Tags: acceptance, challenge, changes, death, depression, divorce, dying, family, fathers, Fear, God, gratitude, growth, happiness, healing, hope, journey, joy, learning, lessons, life, live, Love, memories, monsters, never give up, normalcy, parental loss, sadness, sobriety, sorrow, strength, struggle, thankful
Today is international pickle day!
• November 14, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living
Tags: acceptance, day by day, eli and ella, Eli and Ellas Prayer Warriors, enjoy the moment, family, games, gene therapy, gratitude, growth, healing, Hero, hope, international pickle day, learning, live, Love, Miracle, MLD, never give up, normalcy, one day at a time, rare disease, special needs, thankful, 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
My wish for this school year
• August 27, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey
Tags: acceptance, buddies, challenge, changes, day by day, differences, eating lunch alone, eli and ella, Eli and Ellas Prayer Warriors, family, friends, friendship, God, golden rule, gratitude, hope, inclusion, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, rare disease, special needs, special needs parenting, strength, warriors
Fear Not 