No, not Post Traumatic Stress Disorder…

Persistent Traumatic Stress Disorder.

A heart mama talked about how we don’t have post traumatic stress disorder but more like persistent traumatic stress disorder.

It feels like one after another after another – we’re hit with something new.

And sometimes, the hits aren’t even all that big.  It just feels like it after weeks of being hospitalized.

Yesterday, I went into my O.B. for my post partum visit.  Needless to say I scored very high on the screening test for Post Partum Depression.

My doctor was great and talked to me for awhile.  Luckily, she realizes I have some big things happening and perhaps the high score could be slightly skewed.

Ya think?!?

As I walked through the halls of her office, I could feel my stomach turn in knots.  My pulse started to race.  I walked by the sonogram room where we got the awful diagnosis.  And I was transported back to when I was carrying Evan – the fear, the worry, the anxiety, the unknown.

Being a heart mom is so much harder than I ever thought it would be.  Sure, I knew it would be difficult, I just didn’t realize it would take so much out of me.  The days in the hospital, the unknown plan for his surgeries, the separation from my family, the stress and toll on my body.  Evan’s condition takes good sharp jabs at my spirit everyday.

This morning I was woken up with the eager young minds of medical school students and first year resident.

Dangerous minds…more like it.

After a night of no sleep – since Evan was dirtying his britches every hour and half and needed to be changed – I slept about zero hours. Which I’d rather lose sleep over dirty diapers than him being sick…

It was 7 am – I was underneath my warm, pink, fuzzy blanket from home.  Evan had been asleep for about 20 minutes so I knew that if closed my eyes, I’d get at least an hour of solid sleep.

But, the door opened and the bright eyed, over eager, future of tomorrow walked in. 

And I was peppered with questions…

“How was his night?” – Fine. (still sleepy)

“Why didn’t he sleep well?” – He pooped his wouldn’t sleep well either. (still sleepy but more irritated)

“Have you considered meeting with a geneticist and getting a microarray done?” – No. (Ok – that woke me up)

*a microarray is a more detailed map of the chromosomes which we chose not to do since sometimes mutations that show up are silent and don’t actually get expressed.  Which means – more worry for no reason.  Healthy people can have mutations that aren’t expressed*

I looked at them.  Not sure if their question was directed from the attending or fellow or it was just their minds on overdrive.

Me – “No – we had a lot of testing done while I was carrying him.  I don’t think any of it is necessary.”

Student – “Well – with the cleft lip and heart defect – there could be another midline problem that we could find if we did more testing.  We could even test his eyes since sometimes we see problems with kids eyes with cleft problems.”

Me (now I’m done…I’m tired, in my pajamas, and I just want them to leave) – “Here’s my take.  If we are looking to rule out a problem, I am all for more testing.  If you are just looking to look, then no.  He is going through enough already. I don’t think any of this is necessary unless he doesn’t meet his milestones.  And right now, he’s where he needs to be. Thanks.”

My obvious cue for them to leave…

But, no..

Student – “We just want to give you options in case his plan of care changes to help you in the future in case you were to have more kids.  This will help determine future children and if they’ll be normal.”

Me – “Enough.  If you think my plan of care is going to change no matter what happens in the future, you’re wrong.  I’ll love him just as much no matter what happens or if something else is wrong.  And, despite his defects, I think he’s very normal.  As for genetic testing…you know to test for abnormalities…did you get any done?”


End scene.

And yet again…I was reminded in a not so subtle way that my boy isn’t a regular baby.  I look at him – with his cleft, his scar down his chest, his scars from the chest tubes…all of this scars…and desperately want him to be “normal.”

But, it’s not in the cards for my Evan.  And it breaks me.  But, that’s why we’re doing everything we can for him – to make sure he can lead as “normal” of a life as possible.

Persistent Traumatic Stress Disorder.

Make it stop…






  1. Oh my lord…I’m so impressed that you managed to keep your calm…I wouldn’t have been able to handle myself as well as you have!

  2. wow! you did a great job at answering under such stress! you think they would have gotten the clue and know better than to mess with a mommy with a baby out of surgery! i’m sorry they stressed you out and took away your sleep! you’re such a wonderful protective mother! you’re doing better than great!!!

  3. Elizabeth says:

    F* them!

  4. Your grace in your responses on zero sleep amazes me. Good for you, mama, for hopefully making them think and for protecting your precious Evan who is an incredible gift from God. His life has taught me things and I’ve never even met him. That’s pretty incredible.
    And what is “normal” anyway? I’m pretty sure I don’t know a single “normal” person.