For the past two years I have hosted an online chat room for kids with chronic and terminal illness. I love my job and am extremely lucky to have the opportunity to chat daily with some of the most inspiring human beings on the planet. Some of my kids have passed away and some of them have fought their illnesses against the odds. They have healed themselves with the power of their courage, optimism and faith. Their stories are beautiful, a testament to the human spirit and the power of love.
Some of the children in the chat room have rare illnesses that paralyze them, keep them bed-ridden, have no cure. Many of them were born with HIV, Cystic Fibrosis, Cerebral Palsy. Many have Cancer. Recently I have grown close to one girl in particular. She has been in and out of the hospital for several years and has the rare form of chromosome-defective Leukemia. Her sister died from the same disease ten years ago and her mother has lived in and out of hospitals with both daughters all the while. She flies from Los Angeles (where her family lives) to St. Jude hospital and back, weekly. I have never met this mother. I have only heard her story through her daughter, who is sick and who I chat with. Today she got some bad news and her mother was a basketcase. The girl told me that she wanted her mother to feel better so she fixed her a bed in her hospital room and warned the nurses to stay away so she could sleep. The image in my head overwhelmed me. Little girl in hospital bed, taking care of her mother. I started to cry.
When I asked her how she was feeling, she said that she was okay with whatever happened to her. She was as fearless as all of the children I have met, embracing death and the idea of mortality with the kind of wisdom adults are not capable of. "The only thing that worries me is my mother. I keep fighting for her."
As a parent I can't imagine what it would feel like to lose a child. I cannot imagine how it would feel to lose a child and then hear bad news about your second. What struck me most about our conversation was the love this girl had for her mother. She did not take it for granted like most teenagers. "My mom is the coolest mom in the world. I am so lucky," she said. And she is lucky. So many of the children I have met are not. Loving parents are hard to come by these days. It's amazing how many sick children do not have the love and support they need. It breaks my heart. It makes me fucking scream.
I don't know where I'm going with this post. Maybe to remind myself and all who read here that with all the technology and advancements in medicine, health is still something to be grateful for.
Hug your babies tight.