April 17, 2018, is World Hemophilia Hemophilia Day. Before you tune out because you don’t have a loved one affected by my son’s rare bleeding disorder, listen to this year’s theme — “Sharing Knowledge Makes Us Stronger.” That’s a theme I find to have relevance far beyond the hemophilia community. In fact, I would say that the theme of strength in sharing is extremely apropos for every parent raising a child with a chronic illness, disability, or special needs.
Here are 6 ways that I find sharing empowers parents just like me:
- Sharing ends isolation — One of the toughest battles I have faced as the parent of an exceptional kid is feeling alone. That sense of being an outsider where no one is like me can incite despair. I lose all sense of perspective. But when another parent shares with me, a tiny spark of hope ignites. Just knowing that I’m not alone on my journey to care for this child — that someone “gets it” — can help me to press on. I also feel less isolated when my son’s treatment center, social worker, and nurse coordinator share resources with me. Suddenly, I don’t have to figure everything out by myself in the midst of crisis.