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
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
4 a.m. thoughts
• November 29, 2023 • 2 CommentsPosted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, anxiety, caregiver, challenge, dark night of the soul, darkness, day by day, depression, eli and ella, family, Fear, feelings, future, God, grief, growth, healing, inner critic, journey, learning, lessons, life, never give up, one day at a time, poetry, purpose, sadness, smothering, sober, sober living, sobriety, sorrow, special needs, struggle, thoughts
“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
Today is international pickle day!
• November 14, 2023 • Leave a CommentPosted in Back to life and living, Diagnosed, Life after diagnosis, living
Tags: acceptance, day by day, eli and ella, Eli and Ellas Prayer Warriors, enjoy the moment, family, games, gene therapy, gratitude, growth, healing, Hero, hope, international pickle day, learning, live, Love, Miracle, MLD, never give up, normalcy, one day at a time, rare disease, special needs, thankful, warriors
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
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
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
Fear Not 