Living “50 First Dates”
• July 31, 2024 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: 50 first dates, acceptance, challenge, changes, clinical trial, day by day, eli and ella, family, Fear, gene therapy, God, gratitude, Hero, hope, journey, joy, life, living a movie, Love, memories, metachromatic leukodystrophy, MLD, never give up, rare disease, sorrow, special needs, special needs parenting, strength, thankful, warriors
When a picture tells a thousand words
• June 12, 2024 • 2 CommentsPosted in Along the way, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, challenge, changes, class of 2024, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, enjoy the moment, family, Fear, gene therapy, God, graduating, graduation, gratitude, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, parenting, persevering, rare disease, sorrow, special needs, strength, warriors
Live Like Eli
• March 24, 2024 • 2 CommentsPosted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living
Tags: acceptance, changes, day by day, disability, eli and ella, faith, family, Fear, gene therapy, God, gratitude, hope, journey, joy, learning, life, live, live like Eli, Love, memories, metachromatic leukodystrophy, MLD, never give up, present moment, rare disease, sorrow, special needs, strength, surgery, warriors
How quitting alcohol has increased my patience
• January 25, 2024 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey, sobriety, the ride of my life
Tags: acceptance, alcohol, challenge, changes, choices, day by day, eli and ella, Eli and Ellas Prayer Warriors, family, Fear, God, gratitude, hope, journey, learning, lessons, life, Love, memories, MLD, never give up, one day at a time, patience, rare disease, sadness, sober, sober living, sobriety, sorrow, special needs, special needs parenting, strength, warriors
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
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
Fear Not 