Blog Archives
I’m trying
• May 15, 2023 • 3 CommentsPosted in Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, anxiety, challenge, changes, day by day, depression, eli and ella, Eli and Ellas Prayer Warriors, family, Fear, fitting in, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, praying, rare disease, sadness, sorrow, special needs, strength, thankful, warriors
The journey of many miles, tears and smiles – Thank you Milan
• April 28, 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, challenge, clinical trial, day by day, eli and ella, Enjoythemoment, family, Fear, gene therapy, God, goodbye Italy, grateful, gratitude, Hero, hope, hospital, Italy, journey, joy, life, Love, memories, metachromatic leukodystrophy, Milan, Milano due, miracles, MLD, never give up, normalcy, rare disease, sadness, sorrow, special needs, strength, thankful, warriors
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
For a moment, not much else seemed to matter – Day 2 in Milan
• April 17, 2023 • 4 CommentsPosted in Along the way, Diagnosed, Diagnosis, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, changes, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, hope, journey, joy, learning, life, Love, luckiest of the unlucky, memories, metachromatic leukodystrophy, Milan, miracles, MLD, never give up, rare disease, San Raffaele, 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
Getting ready for the big game, CHOP STYLE 😍
• March 1, 2023 • Leave a CommentPosted in Diagnosed
Tags: acceptance, basketball, district, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Fear, gene therapy, God, journey, joy, life, Love, memories, metachromatic leukodystrophy, MLD, Rams, sorrow, special needs, spring-ford, strength, warriors
Bling
• March 1, 2023 • Leave a CommentPosted in Diagnosed
Tags: acceptance, bling, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Fear, gene therapy, God, journey, joy, life, Love, memories, metachromatic leukodystrophy, MLD, sorrow, special needs, strength, warriors
Will God heal me?
• February 28, 2023 • 2 CommentsPosted in Diagnosed
Tags: acceptance, anxiety, can God still perform miracles, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, healing, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, Questions, sorrow, special needs, strength, warriors
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
Fear Not 