Blog Archives
When strangers become friends- 8 years ago in Milan
• April 27, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, anxiety, challenge, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, friends, gene therapy, God, gratitude, gray itude, happiness, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, rare disease, sadness, sorrow, special needs, strangers, strength, thankful, warriors
No matter how many times we do it, it never gets easier – Day 5 in Milan
• April 20, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, Milan
Tags: anxiety, challenge, changes, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, grateful, gratitude, happiness, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, MRI, never give up, purpose, rare disease, sorrow, special needs, strength, warriors
Drowning in my sleep
• April 5, 2023 • 1 CommentPosted in Along the way, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, anxiety, believe, challenge, changes, day by day, drowning, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, God is my lifeguard, gratitude, Hero, hope, journey, joy, learning, life, lifeguard, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, sadness, scared Jesus, sobriety, sorrow, special needs, strength, trust, warriors, water
The ups and downs and things you hope never come true when you sign up for a clinical trial.
• February 6, 2023 • 2 CommentsPosted in Diagnosed
Tags: acceptance, adhd, anger, challenge, changes, clinical trial, day by day, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, Hero, hope, learning, Love, metachromatic leukodystrophy, MLD, mood disturbances, never give up, ovaries, sadness, sorrow, special needs, t, 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
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
And so I write
• January 25, 2020 • Comments Off on And so I writePosted in Diagnosed, Life after diagnosis, My journey, the ride of my life
Tags: acceptance, challenge, changes, demons, Eliandellasprayerwarriors, Fear, God, hope, journey, life, metachromatic leukodystrophy, MLD, sorrow, strength, warriors
Digging Deeper
• July 8, 2013 • 5 CommentsPosted in Milan
Tags: challenge, Eliandellasprayerwarriors, God, hospital, Milan, MLD, sorrow, strength
Fear Not 