Thursday, June 20, 2013

I Hate You

I'm sorry, but I hate you.

Not always and never for long, but I do hate you.

Please don't take it personally. Nothing about my hate is personal to you; it is only personal to me.

I hate you for a split second when I learn that your kid scored the winning goal at this week's soccer game.  The Dancing Queen has begged us to play soccer, but "without the running" since she can't run.  There is no soccer without running though. And when you post your child's victory, I hate you for reminding me that DQ will never get her wish of being a soccer star.  It's not your fault and I am very happy that your child is accomplishing their goals (pun unintended), but I hate you for a split second nonetheless.

I hate you the entire time my eyes are focused on the title of that sentimental (or is it comical) blog post you shared, like "A Father's Letter to his Daughter about her Future Husband".  DQ talks about her future family and getting married all of the time.  We know that will never happen.  And as syrupy sweet or knee-slappingly funny as the post may be, it feels like a knife to my heart each time I read the title. I know you don't post it to hurt me and under other circumstances, I'd probably share the sentiment, but I hate you for reminding me of what will never be.

I hate you when you say "she doesn't look sick" (I am also secretly kicking  you in the head). I'm sorry my daughter does not walk around topless so you can see her scars or the veins protruding from her abnormally large and swollen belly; or that you are too blind to notice the dark pools encircling her eyes or notice that she is skin and bone from failure to thrive.  I know you don't know what else to say and you are trying to make me feel better and mean no harm; but I hate you nonetheless for making me justify our decisions based on only what you see on the outside. Nobody likes to be judged on looks alone.

I hate you for suggesting that I am super human or some great person for simply living my life.  I did not choose to be the mother to a sick child with special needs.  I only do what I have to do to keep my family moving forward.  If I stop, we'll all drown and I love them all too much to allow that to happen.  You would do the same if it was your family--your child.  I hate you for suggesting that you couldn't do what I do because that makes me realize how alone I really am. And, of course, I am alone.  You don't understand.  And that is not your fault.  You've not been forced to walk to the tight rope, carrying the world on your back.  I don't want you to understand. I wouldn't wish this on anyone.  But I still hate you for the moment that you remind me that I am all alone.

I hate you for ignoring us; for pretending everything is fine.  When you suggest that we take our family on a 7 mile hike through the woods (without wheelchair access) or avert your eyes when we give DQ her medicine, I hate you for making me feel invisible and unloved. I know that is not your intent and you probably don't know what to do or say, but I hate you nonetheless in that moment.

Hate is a very strong word and I try not to use it for casual things. True hate can only be born of love--love that was mortally hurt.  It is the charred remains of the arsonist's muse. So, I guess it is unfair for me to say "I hate you." I don't really.

No, I hate CHD! I hate DiGeorge's Syndrome!

So, if you see darkness cross my eyes or my demeanor momentarily changes when we talk, please know it is not you. I know you've meant no harm.  You just reminded of what I hate most in this world.


  1. Points well taken! Every photo I see of the Dancing Queen, she is smiling and enjoying life at the moment. That's what I focus on. I know that you have so very much more to focus on and I support you from miles away.


  2. I hate CHD and DiGeorge's Syndrome too. HATE!!
    I'm sorry and I'm here, and I'm sending you only love from CA.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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