grief | Fear Not

Pain and beauty, blended together

• July 5, 2026 • 2 Comments

Posted in Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, anxiety, anxious, blog, caregiver, challenge, change, changes, choices, clinical trial, day by day, demons, depression, eli and ella, Eli and Ellas Prayer Warriors, eli vivian, enjoy the moment, Enjoythemoment, family, Fear, friends, future, gene therapy, God, gratitude, grief, happiness, healing, Hero, hope, inclusion, Italy, journey, keep going, learning, lessons, letting go, leukodystrophy, life, live, live like Eli, Love, meditation, metachromatic leukodystrophy, Milan, miracles, MLD, my4es, never give up, normalcy, one day at a time, past, purpose, Questions, rare disease, recovery, retreat, sadness, sorrow, special needs, special needs parent, special needs parenting, spring-ford, strength, struggle, surrender, thankful, trials, trust

4 a.m. thoughts

• November 29, 2023 • 2 Comments

Posted 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

The pain of letting go

• October 27, 2019 • Comments Off

Posted in Along the way, Diagnosed, Life after diagnosis, the ride of my life
Tags: acceptance, Eliandellasprayerwarriors, Fear, grief, journey, letting go, life, Love, metachromatic leukodystrophy, MLD, normalcy, sorrow