PTSD...🤬

Warning: This is an angry CHD post.

Someone once told me, "PTSD isn't a real diagnosis"...and although I have removed this person from our lives, these words ring in my ears on weeks/months like these.   
Every single night this week,  Spencer and Tucker have both been waking up in our bed. 

A few months ago Tucker was involved in a "lockdown" drill at school.  (If you are not familiar, the school locks all of the classroom doors, turn off the lights and everyone hides. Then someone comes around and jiggles every classroom handle.)  For the child that doesnt have PTSD, this would be a scary situation.  From the parent of children with PTSD, I assure you that this situation has catapulted Tucker (and subsequently Spencer by Tucker's actions) back to the "dark period" of his CHD journey.  He has regressed so much, he is back to having nightmares every single night, he has "accidents" again, he (and Spencer) won't fall asleep for hours at bedtime, they both have repeatedly been complaining about pain.  Spencer is back to sleepwalking/talking in his sleep. I am not sure that I can handle many more sleepless nights.

For me it's this picture, I remember being so happy the day that I took this photo, post op just a few days after his first open heart surgery and no chest tubes!  The doctor's tell you..."What an amazing recovery!"  Tucker was awake, his heart was beating on it's own again and most importantly the surgery was a success and we had a little "pink" boy.  What you dont see is how many times I got up (...and still do) to check and make sure that he is alive.  Or how many funerals for heart friends have we attended since this picture was taken.  And today I am beyond angry and upset that my children will grow up and remember all of this.

I'm not exaggerating when I say that both of my boys have been through hell and back.  Both of them have their own story about how Congenital Heart Disease has effected them, but for once, I just don't know how to help them.  This is the part of CHD that sucks and there is no CHD book that tells you how to "repair" this.  So from this angry heart ..."Fuck you CHD, I fucking hate you!"