The internet is a great place to find support if you are the parent of a sick kid. Really, it's a beautiful community maker. As a parent, you can vomit your whole (truly) awful story out onto a blank blog space and feel the catharsis of getting the tragedy out. You share your link on Facebook or Twitter, and in return, you may find yourself enveloped in a community of supporters who love you and empathize and offer help and love in your hour of deepest need. Prayer circles widen and you don't really need to make a million phone calls. You just write what's happening and the support of friends and strangers is there.
I do not follow sick kids.
A friend on Facebook brought it to my attention, actually, and it was really, really weird. He lashed out at his Facebook friends because nobody responded to a "write on this sick kid's wall" request. This guy always seemed to be following and posting about sick kids. When I read his accusation, all I could think was, "That's not how I want to spend my time." I don't judge anybody else for caring, but I felt rather offended that I was getting yelled at for not caring about the same things as him. I sort of felt like, "Geez, leave me alone."
But it forced me to really consider why I don't
But the thing is, at the end of the day, no matter how many people you have around you, it's you. It's you fighting alone for the life of your sick kid. And I remember feeling like the life was literally draining out of me. I couldn't feel positive. I couldn't feel fearless. I couldn't feel OK or un-scared. I was living a half-life - half for me and half for him.
I have tried to read sick kid blogs. Sometimes I'll hop over to a link a friend shares, intending to get sucked in to the humanity of the story. I like feeling. I like empathizing. I like being part of a larger community that holds up and sustains someone in need. But whenever I make the attempt to get reeled in, I get through maybe the first paragraph and the morbid reality kicks me out. I can't handle it. I don't need to feel that secondhand. I've had it first hand and it is no way to live. I don't want to spend any more time dealing with the possibility of a child dying.
I am interested in why people follow them. Perhaps news and reality TV and social media are inoculating us against one-on-one closeness. We have such wide circles of virtual companionship that we feel compelled to seek closeness in other ways. Following the story of a sick kid we don't know allows us to feel safely. It's not our kid. It's not our story, but we can be part of it at a distance. When that child heals, we can all rejoice together and let that family move on together. If that child dies, then we can all mourn together and support the family through gifts and prayer. But at a distance. We don't ever really have to look into the eyes of the grieving parents. We may have no memory of the child as healthy and vibrant, so the sudden void of presence does not ripple through our lives. That child was never ours. We'll never feel sadness on a birthday. Christmas stays the same.
My kid is healthy. I don't write about him anymore. Lots of people celebrated with me, sustained me. People who offer kind words, hugs, and blessings slake the thirst of a desiccated heart and soul. If you are up to the challenge, those parents need you. My heart truly cries for parents enduring the painful reality of child loss. Writing and sharing provide therapy, and a widening circle of support and community buoy one's soul. But I cannot do it. I cannot insert myself into the lives of strangers enduring loss because that's not how I want to live. If you can, share those stories. Help those parents by widening their circle of support. Just don't get mad at me for not wanting to join. It's too much for me.