Blog Archives
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
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
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
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
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
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
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
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 