In this blog, I pull from my experiences raising a toddler with a rare genetic disorder. The posts explore a wide range of topics and focus on the emotional struggles we go through when parenting a child who has differences or disabilities. There are no easy answers or judgments here. Just honesty, understanding, and a sense we are not alone.

Sleep: How Can We Get Shut-Eye When It Feels So Out of Our Control?

(Note: This is third 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) First, the bad news when it comes to sleep research: It never takes people like caregivers into account. This is often because we have a set of challenges so intractable and unique that they exist in a category of their own. When we tak

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Sleep: How Can We Get Shut-Eye When It Feels So Out of Our Control?

(Note: This is third 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) First, the bad news when it comes to sleep research: It never takes people like caregivers into account. This is often because we have a set of challenges so intractable and unique that they exist in a category of their own. When we tak

Lifestyle

Stress Relief (Part 2): Stress-Relieving Activities Beyond Meditation to Calm Your Brain

(Note: This is second 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 how much stress can creep into our daily lives when we are caregivers. But what can we do about it when we are already mentally and physically exhausted and our time is so limited? There is certainly no shortage of advice a

Lifestyle

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,

Lifestyle

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

The Bright Side

ABOUT CLAIRE

I hold a doctorate from Yale and worked as an academic before I left the workforce to care for my youngest daughter. I have degrees in French and German and have lived in both France and Germany. I love to read, write, run, and hunt for treasures in thrift stores.

I am the mother of two girls: a neurotypical grade schooler and a toddler with a chromosomal microdeletion, as well as a rare genetic disorder called Rett Syndrome. This is a progressive disease that affects mostly females and manifests in toddlerhood. It normally involves loss of speech and purposeful hand use, as well as mobility difficulties, breathing issues, seizures, and anxiety. In early 2020, when my youngest daughter was two, she was misdiagnosed with autism (quite common for Rett Syndrome). In August 2021, at the age of three-and-a-half, she got a correct diagnosis.

I am open about my struggles as a parent but also want to maintain my family’s privacy. For this reason, I don’t include my daughters’ full names in my blog.

Claire's Publications and Awards >

HIGHLIGHTS

Podcast: Behind The Window

Check out Claire reading one of her pieces and discussing how forming friendships can be different for children with disabilities.

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Sleep: How Can We Get Shut-Eye When It Feels So Out of Our Control?

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RECENT POSTS

Sleep: How Can We Get Shut-Eye When It Feels So Out of Our Control?

Stress Relief (Part 2): Stress-Relieving Activities Beyond Meditation to Calm Your Brain

Stress Relief (Part 1): Why It's So Hard for Caregivers to Meditate and What to Do About It

Hope: May The Good Times Continue

ABOUT CLAIRE

HIGHLIGHTS

Podcast: Behind The Window