Blog Archives
Life changing decisions
• January 12, 2024 • 2 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, My journey, 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, hard things, Hero, hope, Indecision, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, my four warriors, never give up, rare disease, sorrow, special needs, special needs parenting, strength, tough decisions, warriors, writing
The many joys of the game
• December 17, 2023 • 2 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, basketball, challenge, changes, day by day, eli and ella, fitting in, game, God, gratitude, Hero, hope, inclusion, inclusivity, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, parenting, Questions, rare disease, special needs, strength, team, warriors
When even little things seem to be too much to bare
• December 13, 2023 • Leave a CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, changes, comfort, day by day, eli and ella, Eli and Ellas Prayer Warriors, emotions, Enjoythemoment, family, God, gratitude, hope, in her shoes, journey, joy, learning, letting go, life, Love, metachromatic leukodystrophy, MLD, never give up, one day at a time, parenting, proud mom, rare disease, special needs, strength, surrender, tears, warriors
“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
How to “find” gratitude even when you don’t feel it
• September 24, 2023 • Leave a CommentPosted in Diagnosed, Diagnosis, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, blog, day by day, drew Barrymore, eli and ella, Eli and Ellas Prayer Warriors, finding gratitude, finding joy, GMA, God, good morning America, gratitude, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, positive, positivity, rare disease, special needs, strength, today show, warriors, writing
A moment we had only HOPED we would see
• August 31, 2023 • 1 CommentPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, anxiety, challenge, changes, clinical trial, day by day, eli and ella, family, gene therapy, God, gratitude, hope, journey, joy, learning, lessons, life, Love, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, parenting special needs, parents magazine, rare disease, sadness, senior year, special needs, strength, thankful, today show, warriors
My wish for this school year
• August 27, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey
Tags: acceptance, buddies, challenge, changes, day by day, differences, eating lunch alone, eli and ella, Eli and Ellas Prayer Warriors, family, friends, friendship, God, golden rule, gratitude, hope, inclusion, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, rare disease, special needs, special needs parenting, 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
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
Fear Not 