Archive for the 'Along the way' Category
Pushing through- Our last day of testing in Milan
• April 27, 2023 • Leave a 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, gene therapy, God, gratitude, happiness, Hero, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, rare disease, San Raffaele Ospedale, 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
Easy peasy – Day 6 in Milan
• April 21, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, Milan, My journey
Tags: acceptance, changes, China town, clinical trial, day by day, dinner, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, gene therapy, God, gratitude, hospital, journey, joy, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, never give up, pizza, positano, sorrow, special needs, strength, vacation, warriors, window shopping
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
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
Giving it all in the moment we are in
• March 11, 2023 • 3 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, day by day, don’t stop, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, enjoy the moment, Enjoythemoment, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, life, live, live in the moment, live like Eli, Love, metachromatic leukodystrophy, MLD, never give up, Rocky, special needs, strength, warriors
Learning to give yourself grace
• January 18, 2023 • 1 CommentPosted in Along the way, Life after diagnosis, living
Tags: acceptance, anxiety, day by day, DIY, do it yourself, eli and ella, Eliandellasprayerwarriors, Fear, gene therapy, Grace, gratitude, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, normalcy, Pinterest, Pinterest fail, rare disease, sorrow, special needs, strength, warriors
Inclusion at its finest
• January 9, 2023 • Leave a CommentPosted in Along the way, Diagnosed, Life after diagnosis, living
Tags: acceptance, changes, community, day by day, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, God, gratitude, hope, inclusion, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, sfasd, special needs, spring-ford, spring-ford proud, strength, warriors
Fear Not 