Blog Archives
Building more than good basketball players
• January 18, 2024 • Leave a CommentPosted in Along the way, Back to life and living, Day by day 2021, Diagnosed, Life after diagnosis, living
Tags: acceptance, basketball, challenge, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, family, gene therapy, God, gratitude, hope, inclusion, journey, joy, life, Love, metachromatic leukodystrophy, MLD, never give up, normalcy, rare disease, special needs, spring-ford, strength, team building, 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
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
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
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
Fear Not 