I encountered a concept today that I can’t get out of my mind — children’s hospice. I know that hospice exists; I’ve seen someone go. I know that children get sick; I wrote a book about it. Yet, in my mind, those two saddest thoughts never met until today, when I ran across a website for Bluebell Wood Children’s Hospice.
I stared at the name for well over a minute, thinking about a place filled with no hope and the heaviest sorrow a human can know. But then I read some of the stories of people who had gone there. Yes, there was terrible sadness, but there was also a lot of love, and even laughter.
Still, my heart was lighter before I knew.
I know that everyone will die someday; I’ve been to a dozen funerals. But it’s always a shock to learn about yet another disease that has no cure, an illness that healthy living can’t fix, something born in the genes. But I watch the videos to respect the people living through Stargardt disease, Alternating Hemiplegia of Childhood, or one of the thousands of other rare diseases affecting millions of people. And when I watch, I learn something about resiliency and hope.
Still, my heart was lighter before I knew.
Sometimes it is overwhelming to think that every moment of every day, families are struggling, loved ones are dying — it’s just too much to feel. But I’m glad I still can feel. I can’t imagine growing up with the Internet, where every day children stumble upon concepts they can never unthink. In one day, a teenager could encounter children’s hospice, the heaviness in this blog post, and a video about Duchenne’s muscular dystrophy that weakens a person’s muscles relentlessly until they die. I’ve encountered such things gradually and so have been able to feel, adapt, and move forward. But how does the mind protect itself from an onslaught without experience to process it? Desensitization, I think. Either you become immune or succumb to a depression too big to see beyond.
I know that as overwhelmed as I feel today, next week will bring perspective. I’ve learned this over time. I’ve also learned that even though part of me wishes I never knew about the sad things in the world, knowing is a part of living. At first you cry, which is okay because you care, but then you get to know the people behind the sadness, and you often learn something amazing — like Duchenne’s doesn’t affect the muscles in a smile.
Author Krista Tibbs 