One day, my son Ben turned to me, his brow furrowed with concern, and softly confessed, “I feel sorry for Dori.” Dori, his younger brother Dorian, faces life with a terminal illness. He relies on a complex array of medical equipment that anchors him, restricting his movement. He cannot walk, crawl, or even sit upright unaided. Approaching his tenth birthday, Dorian is physically the size of a small toddler. His twin brother, Wynn, tragically passed away at the age of six from Mucolipidosis II, the same genetic disorder they both shared.
Ben’s words, though innocent, prompted a swift and insightful response from my husband. He gently corrected Ben, “There’s no need to feel sorry for Dori. He’s the happiest, most loved, and cheekiest boy you’ll ever meet.” And it’s true. Dorian is a beacon of happiness. He thrives on making others laugh, constantly requests “snuggle time,” and turns his tummy into a drum kit, providing a rhythmic soundtrack to his days as he enjoys his favorite music. He expresses “I love you!” more frequently and genuinely than anyone I know, and he is, without a doubt, a profound blessing to our family.
We, his family, don’t pity Dorian because we witness firsthand his love for life and the immense love that surrounds him. Initially, I questioned my husband’s seemingly abrupt correction to Ben. However, I’ve come to understand that Dorian is indeed living out his destiny, precisely as intended. Who are we to judge his life as less joyful or less fulfilling simply because it doesn’t align with our preconceived notions of happiness?
This powerful video by Claire Wineland resonates deeply with this very conversation.
Claire eloquently states, “We look at people who are sick and we pity them because we believe that their sickness inherently diminishes their capacity for joy compared to everyone else.” Yet, she passionately declares that some of her happiest moments were experienced while hospitalized, because joy and beauty are omnipresent, even amidst her lifelong battle with cystic fibrosis. She further emphasizes, “I’ve been sick and dying my entire life, and yet I am so proud of my life.” Claire reminds us of our collective tendency to postpone joy, waiting for perfect health, wealth, or wisdom. In this waiting, we inadvertently miss the abundant joy and fulfillment readily available in the present moment. Sadly, Claire passed away last week while awaiting a lung transplant, but her courageous journey and inspiring mission continue to resonate within those she touched. I am filled with pride that my son Dorian embodies Claire’s zest for life and that our other sons have grown to appreciate Dorian’s unique path exactly as it unfolds.
Perhaps you know someone, a loved one, a friend, or a colleague, navigating their own health challenges. Extend your empathy, offer your unwavering support, and shower them with love. These are the gifts they truly cherish, far more valuable than pity. With genuine kindness in your heart, your positive influence can illuminate the joy that may be obscured by the shadows of others’ pity. Give them reasons to laugh, for laughter is indeed a potent medicine.
RIP Claire Wineland – Make Your Life Beautiful
RIP Claire Wineland Throw pillows, twinkle lights and the courage to create: Claire Wineland, a cystic fibrosis activist, reveals the most important lesson she learned while living her life in a hospital room.Speaker: Claire Wineland, Love, Songs, and Updates Page
Posted by The Daily Goalcast on Thursday, September 6, 2018
