Broken heart, Tess

A Step Back from the Hierarchy.

I got a lot of really awesome emails after my last post.  I’m working my way through all of them, I promise.  Keep them coming if you have an adoption question, or a heart question.  I can’t promise to know the answer, but I can promise to try really hard to find someone who does.  

Most of the time, when I get crabby emails, I ignore them.  If I don’t call them out here, then the person will, hopefully, just stop emailing me.  Kind of the whole ignoring the bully on the playground thing that we all learned right around Kindergarten.  I get emails that call me a whiner.  I get emails telling me I have way too many kids to possibly be giving them all “what they need”.  Like I said, you’ve got to let it roll off your back, or you’ll torture yourself with OCD like thoughts about why people are so mean (not that I know anything about that).  
Something has been bothering me lately though, even before I received this email.  In the world of parenting a chronically ill child, there are those few parents that become all consumed with it.  Parents who almost like the attention it brings them to have a child that’s sick.  I saw it all the time, even before I entered the world of parenting my own chronically ill child.  I was a heme/onc nurse for many years.  There were parents, albeit a small percentage (most were wonderful) that loved all the attention.  They reveled in the fact that their child was ill.  There were also parents that tried very hard to create a hierarchy on the inpatient unit.  The sicker your child, the higher you moved up this ‘poor me’ ladder.  It was so sad, and so destructive.  Families felt like their child’s diagnosis was something to be guilty about.  They felt like if their child was doing well, they couldn’t say anything to the family whose child wasn’t. Some parents, unfortunately, perpetuated this illness hierarchy.  
It happens outside the world of childhood cancer.  I think it starts with a parent who is so desperate for a fix for their child that they immerse themselves in a place where it’s all they talk about.  Slowly, they begin to lose themself and they become jaded to the beauty of the world around them, to everything else that is good in their life.  I actually got an email telling me that my daughter isn’t waiting for transplant, so why am I constantly going on about how bad her diagnosis is?  
There are a million things that I could say in response to that email.  Here’s the thing, when I get criticism, because I’m one of those people who is constantly yearning for self-improvement, the first thing I do is take a look deep inside and see if any of the criticism is true.  No, Dolly isn’t waiting for a transplant.  Do I think that makes this any less scary for me as a mom?  No.  But, I do spend a lot of time talking about her diagnosis.  I think I’m falling for the whole hierarchy thing.  I think I’m losing myself.  
When that happens, it’s time to step back.  For now, there is nothing to be gained from my perseverating on it.  We have a surgical plan.  That is the best we’ll have for now.  It’s time to not blog about it, be on the FB groups, or to stop enjoying life while we wait.   It’s time to start blogging about everything else, the other people, the other things.
I have so much that is good in my life.  
My daughter is so much more than her heart defect.  
who appreciates all the kind emails and prayers.  

2 thoughts on “A Step Back from the Hierarchy.”

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