Blog Archives
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
A good day – Day 3 in Milan
• April 18, 2023 • 4 CommentsPosted in Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: appreciation, changes, clinical trial, day by day, eli and ella, Eliandellasprayerwarriors, family, friends, gene therapy, gift, God, gratitude, growth, happiness, healing, Hero, hope, hospital life, journey, learning, lessons, life, live, memories, metachromatic leukodystrophy, Milan, miracles, MLD, Mother Nature, never give up, past, purpose, rare disease, special needs, spring-ford, strength, struggle, thankful, 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
So much bigger than the game -A feel good story
• March 22, 2023 • 5 CommentsPosted in Along the way, Diagnosed, Life after diagnosis, living
Tags: acceptance, basketball, changes, coaches, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, feel good, gene therapy, God, gratitude, Hero, hope, inclusion, inspiring, inspirstional, journey, joy, learning, Love, memories, metachromatic leukodystrophy, MLD, more than basketball, my four warriors, never give up, Rams, special needs, spring ford rams, spring-ford, 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
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
Jan 5th – Signs?
• January 6, 2021 • 2 CommentsPosted in Day by day 2021, Diagnosed
Tags: acceptance, anxiety, anxiousness, changes, death, depression, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, family, Fear, God, journey, joy, life, Love, memories, mess, message, metachromatic leukodystrophy, MLD, signs, sobriety, sorrow, strength
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
Fear Not 