Blog Archives
Violated and vulnerable
• October 31, 2022 • 3 CommentsPosted in Along the way, Diagnosed, Life after diagnosis
Tags: acceptance, choices, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Facebook, Fear, God, hacked, hope, journey, lessons, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, sorrow, special needs, strength, struggle, violated, warriors
Navigating the rollercoaster of life
• October 19, 2022 • Leave a CommentPosted in Along the way, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: caregiver, Covid, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, exhausted, God, journey, joy, life, metachromatic leukodystrophy, MLD, never give up, peaks and valleys, roller coaster, special needs, strength, ups and downs, 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
Four
• August 25, 2022 • 2 CommentsPosted in Diagnosed, living
Tags: acceptance, cherish, clinical trial, day by day, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, Fear, four, gene therapy, God, Hero, journey, joy, life, Love, memories, metachromatic leukodystrophy, MLD, purpose, sadness, sorrow, special needs, strength, warriors
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
Life as I know it; day by day – Jan 1st
• January 6, 2021 • 1 CommentPosted in Day by day 2021
Tags: 2021, anxiety, caregiver, change, day by day, demons, Eli and Ellas Prayer Warriors, God, life, my4es, sobriety, special needs, 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
Fear Not 