Learning to give yourself grace
• January 18, 2023 • 1 CommentPosted in Along the way, Life after diagnosis, living
Tags: acceptance, anxiety, day by day, DIY, do it yourself, eli and ella, Eliandellasprayerwarriors, Fear, gene therapy, Grace, gratitude, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, normalcy, Pinterest, Pinterest fail, rare disease, sorrow, special needs, strength, warriors
A gift
• November 4, 2022 • 1 CommentPosted in Diagnosed
Tags: acceptance, Birthday, caregiver, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, gene therapy, gift, God, gratitude, hope, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, rare disease, sadness, special needs, strength, thankful, warriors
Be happy…so I don’t have to be uncomfortable
• October 12, 2022 • Leave a CommentPosted in Diagnosed, Life after diagnosis, living, My journey
Tags: acceptance, blog, changes, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, family, fitting in, gene therapy, God, journey, joy, life, Love, metachromatic leukodystrophy, MLD, sorrow, special needs, strength, trials, truth, uncomfortable, warriors
Healing all around
• September 15, 2022 • Leave a CommentPosted in Along the way, Diagnosed, living
Tags: acceptance, eli and ella, Eliandellasprayerwarriors, gene therapy, giving back, God, healing, hope, journey, joy, learning, Love, metachromatic leukodystrophy, MLD, never give up
Four
• August 25, 2022 • 2 CommentsPosted in Diagnosed, living
Tags: acceptance, cherish, clinical trial, day by day, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, Fear, four, gene therapy, God, Hero, journey, joy, life, Love, memories, metachromatic leukodystrophy, MLD, purpose, sadness, sorrow, special needs, strength, warriors
Surrendering – the greatest gift I can give myself
• February 16, 2021 • 2 CommentsPosted in Life after diagnosis, living
Tags: acceptance, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, future, gene therapy, God, journey, joy, learning, let go, life, Love, metachromatic leukodystrophy, MLD, music, sobriety, strength, surrender, warriors
Day by day in every way I’m getting better and better – Emile Coue – Jan 6-Jan 9th
• January 11, 2021 • Leave a CommentPosted in Day by day 2021, Diagnosed
Tags: anxiety, day by day, Eli and Ellas Prayer Warriors, Enjoythemoment, Fear, future, gene therapy, God, hope, journey, joy, keep going, learning, metachromatic leukodystrophy, MLD, never give up, normalcy, rare disease, sadness, sobriety, sorrow, special needs, strength, warriors
For what it’s worth
• December 30, 2020 • 3 CommentsPosted in Diagnosed, Life after diagnosis, living
Tags: acceptance, challenge, changes, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, family, Fear, gene therapy, God, Hero, journey, joy, life, Love, memories, metachromatic leukodystrophy, MLD, pictures, sorrow, strength, warriors
When you can’t look away
• December 1, 2020 • Leave a CommentPosted in Diagnosed, Diagnosis, Life after diagnosis, living
Tags: acceptance, challenge, changes, eli and ella, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, gift, journey, joy, life, Love, lucky, memories, metachromatic leukodystrophy, MLD, sorrow, strength, warriors
PTSD
• August 6, 2020 • Leave a CommentPosted in Along the way, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Fear, friends, gene therapy, God, growth, healing, journey, joy, life, memories, metachromatic leukodystrophy, Milan, missing, MLD, post traumatic stress disorder, PTSD, strength, warriors