Posts tagged ‘Fontan Surgery CHD ‘




Pre-Fontan Jitters


I can’t help but have days like today where I just want to cry & scream at the world.

I get a voicemail from pre-registration at Maine Medical Center:

“Hey Meg, it’s Catherine from pre-registration at MMC.” 

It’s kind of sad that we’re all on first name basis.  I’m “Meg” to them, and to a few select others who recognize my number when I call I’m greeted to, “Hey babe, hope you’re not calling with another question you know already know the answer to.”  It’s nice that they care so much, but they should not have my number memorized and so happily leave me a voicemail that should really say, “It’s that time again.  Time to sign over your daughter’s life and hope for the best.  I really have no idea what you’re going through, but I have gotten really good at sounding falsely empathetic.”  Blah, blah, blah.

Next week marks the beginning of hell for us.  Appointments back to back until Valentine’s Day rolls around.  And while happy couples all over the world are having candlelit dinners, we’ll be praying in a waiting room that we get to see our happy little girl again.  (And, it’s the day before our wedding anniversary.  We’ll be spending that (hopefully) moving for the PICU to the step down unit, Barbara Bush.) 

Sometimes the reality of everything just slaps me in the face.  I regress from the positive, up-standing person I’ve become back into the childish girl who wants to cry in the corner and scream “why me?!” at God.  I still say it’s just not fair.

I know, it’ll be over before we know it and we’ll have our happy, even more healthy, little girl back at home with us.  It doesn’t calm the nerves I feel until we get those discharge papers in our hands.  It doesn’t take away the months Ava can’t play because she has a broken heart.  It doesn’t make it any less easy to pray in the waiting room, and meet her in the PICU looking so small and helpless with a fresh cut on her chest.  It hurts.  It’s always going to hurt.

I’m just scared.  I just wish it would all go away.  I wish the voicemails, the x-rays, the appointments, the fear, the need for blood work and surgery would just all go away. 

But I know it won’t.  And now I’ve had my cry.  Thanks for listening.

6 comments January 14, 2011

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness Congenital Heart Defects Life with a CHD Tricuspid Atresia Uncategorized

Life with a CHD

beautiful daughter cardiologist visit CHD CHD Congenital Heart Defect Congenital Heart Defect Awareness Congenital Heart Defects Congenital Heart Defect surgery fear anxiety fear life strong Fontan Fontan Surgery Fontan Surgery CHD found out diagnosis tricuspid atresia problem surgery Giving back heart defect surgery Heart kid life life CHD life heart tears Life with a CHD life with a CHD fear life surgery scared worried life with a chd life struggles life with CHD Living with CHD Living with Tricuspid Atresia PICU
 
%d bloggers like this: