Stress Relief (Part 1): Why It's So Hard for Caregivers to Meditate and What to Do About It
(Note: This is first in a series of health-related posts that frame each topic in terms of the particular struggles busy, stressed-out, exhausted caregivers experience. Information is pulled from current research that might be most beneficial) We all know that acting as a caregiver for a disabled or medically complex loved one comes with a large amount of stress. But did you know that caregiving can actually rewire your brain ? Neuroscientists have begun exploring this topic,
Hope: May The Good Times Continue
Every December I write a post in which I reflect both on what happened to my family over the past twelve months and on what that year has taught me about the concept of hope. When it comes to my daughter, JJ, and the fight against her disease, this year was the most hopeful one yet. Though Rett Syndrome continues to be a looming presence in our lives, we still found many moments of joy and reasons for optimism over the course of 2025. The biggest cause for celebration happene
Duality: Why We Need to Learn to Live with Opposing Truths
I am the primary caregiver to my seven-year-old daughter, JJ, who has Rett Syndrome. I have watched Rett take away her independent steps, hand use, words, and much of her swallowing ability. Recently, it has even begun to curve her little spine. At first, when her losses were coming fast and furious, I only felt the negatives—the anger, grief, unending terror, and bottomless heartache. It has taken many years, but happiness, contentment—even flashes of joy—have now reentered
How Medical Parenting Rewired My Brain
Before becoming a medical parent to my youngest daughter, JJ, I was pretty happy with the way my brain operated. I juggled many...
Advice Versus Support
For medical parents, the contrast between advice and support—two very distinct means of communication—can be stark. We often receive...
Medical Parenting and Spirituality
Like many life altering events or experiences, parenting a child with disabilities and medical complexities can profoundly impact one’s spiritual beliefs. I recently listened to an episode of the Rare Life podcast during which host Madeline Cheney dove into this topic by asking three mothers of children with rare diseases to explain how their parenting journeys have changed their religious and spiritual beliefs. As you might imagine, responses varied greatly. While one mother
