Why I Don't Follow Sick Kid Stories

I don't know if you've noticed, but there's a lot of sick kids out there.  Lots.  They've got cancer and weird blood diseases.  They were born with genetic mutations that have left them unable to walk or eat or learn or laugh like other kids.  Or they fell off the monkey bars and sustained life-altering brain damage.  Their parents write blogs and lots of people follow their stories.  Strangers even, follow them.  My friends will sometimes talk about a sick kid they're following, and my mom tells me about others.

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 care follow those stories.  Once upon a time, I had a sick kid.  I had a kid who almost died twice and I spent over a year dealing with the possibility that we might head to the hospital at any moment, and walk out without my kid.  I didn't have a kid with a chronic illness like cancer or cerebral palsy.  But I measured medication three times a day that ensured his heart wouldn't beat at 220 bpm and make his organs explode.  I visited the pediatric cardiologist monthly.  I watched for signs of acute hypoglycemia.  I was on a death watch.  I wrote about it.  I vomited my story and hoped that people would rally because I needed a team.  I didn't get strangers (I didn't know how to share on Facebook), but I had friends and family around and it felt pretty good.

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.



For my whole life, I've been told I'm a flake.  "You don't finish things," I heard.  "You start projects and don't finish them."  "You just don't follow through."

So for the last, oh, 30 years, I have believed I'm flaky.  When I started something and either took too long or never finished it, from craft projects to college, I thought it was because I'm flaky.

When I found out I was pregnant 8 years ago, after the initial freak out, I thought, "How am I going to do this?  I'm a flake.  This kid doesn't deserve a flaky mom."  Through the course of my pregnancy, I would occasionally find myself drifting into a place where I’d worry about all the deadlines I'd miss and all the projects we'd start and never finish.  Would we have an ever-growing pile of half sewn Halloween costumes in the corner?  Would her room become a haven of partially painted bookshelves and unfinished scrapbooks?  Would I commit and then not follow through?  Would I make promises I couldn't keep?  I didn't want to do that to my kids. I burned with shame and my kid wasn't even born yet.

I've been parenting for a few years now, and I'll tell you, no greater life test exists than raising a child.  I passed all the immunization tests and even got my kid to the dentist, but my first challenge was preschool.  I got her registered, and she got to school every day.  I made snacks when I said I would.  I got her places when I said I would.  We both graduated from preschool with honors and moved on to kindergarten.  At that school, I had to volunteer once a week.  I got nervous because, you know, long term commitments aren’t really a flake’s forte.  But guess what?  I did it.  I volunteered every week.  I even had another baby and did the same things for him.  I brought snack.  I made appointments and kept them.  On paper, I was a really good mom.

But ugh, that voice in my head was always there, criticizing me.  I heard it in the tone of relatives and a childhood friend.  And I'll be the first to admit, that I have left some projects unfinished.  But there is a difference between being a flake and having a firm grasp on what is important.  And you know what, that time I told my husband I was going to start collecting stamps?  Yes, in that moment I told him I wanted to be a philatelist, I was utterly serious.  But I did nothing to pursue it beyond saying that I wanted to do it.  Consequence of my inaction?  Nothing.  Nobody got hurt.  Moral of the story:  That wasn't "flakey."  Stamp collecting is simply not important right now.  My kids are.

And you know what I realized?  Maybe I'm not a leader.  I'm not the PTA president or Girl Scout troop leader.  Other people can be chiefs.  I'm an Indian right now.  I'm OK with that.  But I'm no ordinary Indian.  I'm an Indian with enthusiasm, and that makes all the difference.

I've approached motherhood in that spirit.  I can think of a million examples in my life that I thought were flaky red flags.  Those critics still hounded me.  Like, for example, everybody told me that I'd get SO sick of the Wiggles and I'd be humming the Wiggles in the shower.  And I felt like, "Crap!  I'm not listening to The Wiggles!  Am I blowing off this major component of motherhood like I do everything else?"  But soon I realized the Wiggles aren't a necessary for happy kids because I saw that my kids were happy.  And I really just don’t want to listen to irritating children’s music.  Putting the kibosh on irritating children's music doesn't make me a flake!  It makes me happy.  We listen to everything from TOOL to the original cast recording of The Book of Mormon in the car.  I love hearing my 7 year old singing wildly inappropriate music a 7 year old.  And I don't care what everybody else is doing.  I'm engaged in this way.  I'm not flaking out.

You know, forget all that Indian crap.  I am a leader.  I am my kids' chief.  My "flakiness" is actually my mad leadership skills in disguise.  I wake up almost every morning committed to not doing lame stuff.  I am not a flake.  I am dedicated to showing my children how the dreary, humdrum monotony of life can be broken with honesty and laughter.  That thing they call flakiness was actually me saying, "This is boring and I won't live my life like that."

But you know, those critics were right about one thing.  When they said I don’t finish things, they were absolutely correct.  Motherhood is a project I'll never complete.  I'm going to be doing this forever.