Archive for the 'the ride of my life' Category
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
Back to where it all started – Day one
• April 16, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, back where it all started, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, finding the good, gene therapy, God, journey, joy, life, listening, Love, memories, metachromatic leukodystrophy, Miracle, MLD, never give up, PTSD, sorrow, special needs, strength, tears, 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
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
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
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
The silent thief
• July 19, 2020 • Leave a CommentPosted in Diagnosed, My journey, the ride of my life
Tags: acceptance, anxiety, changes, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Fear, God, journey, joy, life, Love, metachromatic leukodystrophy, MLD, sorrow, strength
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
The pain of letting go
• October 27, 2019 • Comments Off on The pain of letting goPosted in Along the way, Diagnosed, Life after diagnosis, the ride of my life
Tags: acceptance, Eliandellasprayerwarriors, Fear, grief, journey, letting go, life, Love, metachromatic leukodystrophy, MLD, normalcy, sorrow
Fear Not 