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
Living “50 First Dates”
• July 31, 2024 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: 50 first dates, acceptance, challenge, changes, clinical trial, day by day, eli and ella, family, Fear, gene therapy, God, gratitude, Hero, hope, journey, joy, life, living a movie, Love, memories, metachromatic leukodystrophy, MLD, never give up, rare disease, sorrow, special needs, special needs parenting, strength, thankful, 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
Life changing decisions
• January 12, 2024 • 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, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, hard things, Hero, hope, Indecision, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, my four warriors, never give up, rare disease, sorrow, special needs, special needs parenting, strength, tough decisions, warriors, writing
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
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
How to “find” gratitude even when you don’t feel it
• September 24, 2023 • Leave a CommentPosted in Diagnosed, Diagnosis, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, blog, day by day, drew Barrymore, eli and ella, Eli and Ellas Prayer Warriors, finding gratitude, finding joy, GMA, God, good morning America, gratitude, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, positive, positivity, rare disease, special needs, strength, today show, warriors, writing
Jesus take the wheel
• August 24, 2023 • Leave a CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, Hero, hope, Jesus, Jesus take the wheel, journey, learning, letting go, life, Love, metachromatic leukodystrophy, MLD, never give up, rare disease, sorrow, special needs, strength, warriors
My (2) greatest accomplishments
• June 24, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, accomplishments, alcohol free, being present, day by day, eli and ella, Enjoythemoment, family, Fear, gene therapy, God, gratitude, Hero, hope, journey, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, one day at a time, proud, rare disease, sober, sobriety, sorrow, special needs, strength, warriors
Fear Not 