Archive for the 'the ride of my life' Category
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
My (2) greatest accomplishments
• June 24, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, accomplishments, alcohol free, being present, day by day, eli and ella, Enjoythemoment, family, Fear, gene therapy, God, gratitude, Hero, hope, journey, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, one day at a time, proud, rare disease, sober, sobriety, sorrow, special needs, strength, 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
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
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
Fear Not 