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

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

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I have chosen to release my list of hopeful things in several installments. The first and second parts describe the positive...

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