Friday, January 18, 2013

On transplant

Heart transplants are miraculous.
You know what else they are?  Suckfests. 
Yep, I said it.  Heart transplants suck.  Don't get me wrong, I am beyond grateful for the medical science that has kept my children alive, happy, and growing.  On days like today, though, I am just.. well.. kind of disgusted with the whole thing. 
There are so many people out there waiting on a heart.  But there just aren't enough to go around, and some will not make it to get that heart.  Some, like my kids, are exceedingly (you might even say miraculously) lucky to not have to wait months on end in a hospital bed for their new chance at life.  Far too many wait.  And wait.  And wait some more.  It's hard-emotionally, physically, financially.  As a parent you just want to fix whatever is wrong with your child.  You want to make everything better, and if you can't you want to take their place so that they don't have to deal with a single iota of pain or suffering.  In these instances, there's not much you can do but try your hardest to not go insane.  Perhaps that's the hardest part-the loss of control.  It's a helpless feeling to not have much say over your kid's day to day life.
And then, THE day comes.  You get the news that somewhere out there, a family is choosing to save your baby in the face of their own terrible grief.  And again, you give up control.  You kiss your child, and pray over them, and cry.  You watch them wheel their bed down the hall and onto the big elevator to the operating room.  You wonder if you will ever see your child again.  You pray that you will.  You cry some more. 
Then you wait.  You pace the waiting room, jumping up every time someone in blue scrubs comes your way, hoping that it's a surgical nurse with a great update.  You sit in the hard waiting room chairs, putting a couple together to lay down on, because they've told you that it's going to be awhile and that you should probably rest.  HA!  As if you could possibly shut your mind off while you know that a few floors below you, a team of brilliant minds is creating a new life for your child.
When it's over, you breathe a sigh of relief, but you know it's not the end.  It's a new beginning.  There will be heart monitors, blood draws, and much much more.  The therapies in and of themselves can be overwhelming. 
When life settles down a bit-maybe even after you've gotten out of the hospital-you realize just what a huge ordeal your child has gone through.  It's evident in the zipper scar running down their chest.  It stares you in the face as you lay out medication after medication.  Or while you take your child's blood pressure, diligently recording their daily vital signs and watching for any changes that could signal troubles.
My children run.  They play.  They laugh, sing, watch movies, beat up on each other, give kisses, and fill my life with light.  They are beautiful, wonderful miracles.  They are my life's greatest accomplishments, and I will never stop looking upon them with profound gratitude that God decided to make me their mommy.
But damnit, why can't it be easier!?  Why do I have to listen to my daughter scream her way through therapy because she is fearful?  Why do I have to watch my other daughter struggle to understand concepts that are so basic, she should've learned them two years ago?  When she collapses in tears because something is just too hard, my own heart breaks.  It sucks.
Before I became a mother, I dreamt of the life I thought I'd have with my children.  I was so far off the mark, it's not even worth mentioning.  Because of heart disease, my kids live a very very different life than the one I had hoped they'd have.  There are many more fears, anxieties, and frustrations.   And LOTS more tears than I would've liked.  Things that shouldn't be hard are so excruciatingly difficult for my kids that it makes me angry.  Why my kids?  Why?  It's enough to make me want to run to the nearest cliff and take a leap off the edge some days.
Then I have to pull myself back from the edge.  Put myself in check.  Even when we take three steps forward and two back, I need to remember to focus on that ONE step forward.  Tiny though it may be, it's progress.  Sometimes, the little things really are the big things.
They say that nothing that's good in life comes easily.  Judging by the hard work and struggle that both of my daughters have endured, I'd say that they are both made for greatness.
Maybe heart transplants aren't such giant suckfests after all.


  1. <3 this <3 all the posts you write! You need to collect them all and publish it!

    1. Aw, thanks, Stacey! It's my dream to write a book someday.