Blog Archives
“Let there be no darkness in your heart“
• November 21, 2023 • 2 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, My journey, sobriety, the ride of my life
Tags: acceptance, challenge, changes, death, depression, divorce, dying, family, fathers, Fear, God, gratitude, growth, happiness, healing, hope, journey, joy, learning, lessons, life, live, Love, memories, monsters, never give up, normalcy, parental loss, sadness, sobriety, sorrow, strength, struggle, thankful
When God is good but life’s still hard
• October 9, 2023 • Leave a CommentPosted in Diagnosed, Life after diagnosis, living, My journey
Tags: acceptance, day by day, don’t quit, eli and ella, Eli and Ellas Prayer Warriors, Fear, gene therapy, God, god is good, gratitude, have faith, hope, Jesus, keep going, learning, life, life is hard, memories, metachromatic leukodystrophy, MLD, never give up, one day at a time, parents, sorrow, special needs, strength, suicide awareness, warriors, you are loved
When trusting your gut leads you to the unthinkable
• September 19, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, the ride of my life
Tags: CHOP, clinical trial, day by day, drew Barrymore, DuPont, eli and ella, Eli and Ellas Prayer Warriors, every day heroes, Fear, finding answers, gene therapy, God, hope, journey, life, Love, metachromatic leukodystrophy, MLD, neurologist, never give up, rare disease, special needs, strength, terminal illness, the today show, trusting your intuition, warriors
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
As you lie sleeping
• July 7, 2023 • Leave a CommentPosted in Along the way, Diagnosed, Life after diagnosis, living, My journey
Tags: acceptance, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, Eric Vivian, Fear, first born son, gene therapy, God, gratitude, growing up, hope, journey, joy, learning, leaving home, let them go, life, Love, memories, metachromatic leukodystrophy, MLD, moving, never give up, sadness, sibling, sorrow, special needs, special needs sibling, starting anew, strength, the Vivian family, 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
Etched in my memory
• June 2, 2023 • Leave a CommentPosted in Diagnosed
Tags: acceptance, challenge, eli and ella, Eliandellasprayerwarriors, Fear, future, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, Miracle, MLD, never give up, purpose, rare disease, sadness, sorrow, special needs, strength, trials, 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
Fear Not 