Blog Archives
Jesus take the wheel
• August 24, 2023 • Leave a CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, Hero, hope, Jesus, Jesus take the wheel, journey, learning, letting go, life, Love, metachromatic leukodystrophy, MLD, never give up, rare disease, sorrow, special needs, strength, warriors
We are not different, we are unique
• June 22, 2023 • 2 CommentsPosted in Diagnosed, Life after diagnosis, living
Tags: acceptance, angel, angels, changes, clinical trial, day by day, eli and ella, Enjoythemoment, family, friends, gene therapy, God, gratitude, happiness, healing, Hero, hope, journey, joy, learning, lessons, live, Love, memories, metachromatic leukodystrophy, Miracle, MLD, never give up, normalcy, purpose, rare disease, special needs, spiritual, strength, teaching, thankful, unique, warriors
Celebrating ten years post transplant thanks to gene therapy! Happy Re-Birthday Eli
• June 7, 2023 • Leave a CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, Birthday, challenge, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, one day at a time, rare disease, sibling love, sorrow, special needs, strength, warriors
When you realize it can be hard for everyone
• June 1, 2023 • Leave a CommentPosted in Along the way, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, anxiety, challenge, changes, class of 2024, clinical trial, day by day, Enjoythemoment, everyone hurts, family, Fear, fitting in, friends, friends forever, gene therapy, God, gratitude, growth, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, rare disease, ride, school, sorrow, special needs, spring-ford, warriors
When todays moments bring back memories of yesterday
• May 22, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, My journey, the ride of my life
Tags: acceptance, changes, consequences, day by day, death and dying, death of a parent, depression, disappointment, divorce, eli and ella, Enjoythemoment, family, Fear, forgiveness, gene therapy, God, goodbye, gratitude, healing, healing your hurts, hope, how to keep going, journey, learning, life, lonlieness, memories, metachromatic leukodystrophy, never give up, say I love you, sorrow, special needs, strength, warriors
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
Changing the world one clinical trial at a time
• May 1, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, Milan, My journey, the ride of my life
Tags: acceptance, anxiety, challenge, changes, clinical trial, day by day, eli and ella, family, gene therapy, God, gratitude, Hero, hope, hospital, Italy, journey, joy, learning, life, life changing, Love, memories, metachromatic leukodystrophy, Milan, Miracle, MLD, never give up, normalcy, rare disease, research, special needs, strength, treatment, 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
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
Fear Not 