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Radical acceptance is a powerful way to cope with life’s toughest moments. It means fully acknowledging reality without fighting it, judging it, or wishing it away. This idea comes from Eastern philosophy, particularly Buddhism, which teaches that much of our suffering comes from resisting what already is. Instead of wasting energy fighting reality, radical acceptance helps us move forward. Dr. Marsha Linehan, the creator of Dialectical Behavior Therapy (DBT), incorporated this idea into her work. She found that many of her patients struggled with painful realities they were unable to change. Traditional therapies before DBT often focused on changing aspects…

Rare Disease Day is a poignant time to think of all those facing rare diseases, particularly little-known and often under-researched conditions like rare fatal neurological disorders. These diseases, occurring as rarely as one in 100,000-300,000 births, are a big challenge because of their devastating impacts but coupled with a scarcity of resources and support systems for them. The B Brave Foundation fills that painful void for many children and families. Rare diseases can be profoundly isolating. Despite hundreds of millions facing a rare disease of some kind worldwide, most have no cure and lack sufficient medical research funding, leaving patients…

In our fast-paced world, pausing to express gratitude can often be overlooked. Yet, taking the time to acknowledge the efforts of those around us is crucial, especially when it comes to the unsung heroes who dedicate their lives to the care of children with rare incurable disorders. These caregivers embody resilience, compassion, and unconditional love, providing an invaluable lifeline to both the children and their families. Despite their steadfast dedication, these caregivers often go unrecognized, their tireless efforts fading into the background of everyday life. Caregiving for a child with a rare disorder is not just a responsibility; it is…

The holiday season is a time for giving, but when a child is terminally ill, traditional gifts may not feel appropriate or meaningful. Finding the right gift can be challenging as families are often focused on comfort, connection, and the time they have together. Gifts that bring joy, create memories, or provide comfort can be incredibly special. Here are some thoughtful and compassionate gift ideas for terminally ill children and their families during the holiday season. 1. Gifts of Time and Support Often, the most valuable gift you can give is your time, care, and support. 2. Memory-Making Gifts Creating lasting memories…

The holiday season is traditionally a time of joy, celebration, and family togetherness. But when your child is terminally ill, it can feel like an emotional balancing act. Navigating this time of year may bring up complex feelings of sorrow, love, hope, and fear. Yet, the holidays can still be meaningful and filled with moments of connection and comfort. 1. Give Yourself Permission to Feel All Emotions The holidays may bring up a wide range of emotions—joy, sadness, gratitude, fear, and everything in between. It’s important to allow yourself and your family members the space to feel whatever arises. You don’t…

An estimated twenty-seven percent of children are living with one or more chronic illnesses. Chronic illnesses are diseases that last more than several months or those with the impossibility of a cure. Most people are well aware of the impact that physical symptoms and treatment can have on the life of the sick child. However, the lives of all members of that sick-child’s family are changed by the illness, including caregivers and the well-siblings. Siblings’ lives may be impacted in many ways: parents may need to spend a disproportionate amount of time with the sick-child, going to medical appointments and…