Surrendering – the greatest gift I can give myself
• February 16, 2021 • 2 CommentsPosted in Life after diagnosis, living
Tags: acceptance, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, future, gene therapy, God, journey, joy, learning, let go, life, Love, metachromatic leukodystrophy, MLD, music, sobriety, strength, surrender, warriors
Day by day in every way I’m getting better and better – Emile Coue – Jan 6-Jan 9th
• January 11, 2021 • Leave a CommentPosted in Day by day 2021, Diagnosed
Tags: anxiety, day by day, Eli and Ellas Prayer Warriors, Enjoythemoment, Fear, future, gene therapy, God, hope, journey, joy, keep going, learning, metachromatic leukodystrophy, MLD, never give up, normalcy, rare disease, sadness, sobriety, sorrow, special needs, strength, warriors
For what it’s worth
• December 30, 2020 • 3 CommentsPosted in Diagnosed, Life after diagnosis, living
Tags: acceptance, challenge, changes, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, family, Fear, gene therapy, God, Hero, journey, joy, life, Love, memories, metachromatic leukodystrophy, MLD, pictures, sorrow, strength, warriors
When you can’t look away
• December 1, 2020 • Leave a CommentPosted in Diagnosed, Diagnosis, Life after diagnosis, living
Tags: acceptance, challenge, changes, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, gift, journey, joy, life, Love, lucky, memories, metachromatic leukodystrophy, MLD, sorrow, strength, warriors
PTSD
• August 6, 2020 • Leave a CommentPosted in Along the way, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Fear, friends, gene therapy, God, growth, healing, journey, joy, life, memories, metachromatic leukodystrophy, Milan, missing, MLD, post traumatic stress disorder, PTSD, strength, warriors
Treasured moments
• July 5, 2020 • Leave a CommentPosted in Diagnosed, Life after diagnosis
Tags: acceptance, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, Fear, friends, gene therapy, God, hope, journey, joy, life, Love, memories, metachromatic leukodystrophy, MLD, strength
The gift of struggle
• June 22, 2020 • 2 CommentsPosted in Diagnosed, Life after diagnosis, My journey
Tags: challenge, changes, eli and ella, Eliandellasprayerwarriors, gene therapy, God, Hero, journey, joy, life, memories, metachromatic leukodystrophy, MLD, rare disease, strength, struggle
The desperate search for joy in pain
• January 16, 2019 • 7 CommentsPosted in Diagnosed
Tags: acceptance, eli vivian, Eliandellasprayerwarriors, Ella vivian, Fear, gene therapy, God, journey, metachromatic leukodystrophy, MLD, normalcy, sorrow
When you don’t (want to)see what’s right in front of your face
• October 7, 2016 • 2 CommentsPosted in Diagnosed, Life after diagnosis
Tags: Eli and Ellas Prayer Warriors, gene therapy, metachromatic leukodystrophy, MLD
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