Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Thursday, August 2, 2012

The heART of preparedness

"The most prepared are the most dedicated"  Raymond Berry

If there were a masters class on the art of being prepared, a heart mom would most defiantly be the professor.  From the moment you hear those words "there is something wrong with your babies heart" you go into super prepare mode.  At first you do the one thing they tell you not to Google..and then you fall apart at the seams...  You start looking at all the post op pictures you can find.  You talk with all the heart moms that you connect with via facebook and other organizations, your heart skips a beat as your read a blog about a warrior turned angle and say a silent prayer of praise when you read a success story.  You start to build your thick skin, playing a scene over and over again in your head that you have not yet lived..handing your tiny, only days old baby, over to faceless figures in scrubs and masks.  You prepare for the worse and can't bare to hope for the best.

As your laying in that hospital bed, waiting on the next shot of pain to take over, your preparing your mind and heart..."don't get attached, don't get attached"  although you know it is hopeless and the second they lay that tiny body on your chest, all that work you have done to prepare goes the window.     You spend a few beautiful days holding and loving your new child, enjoying every second together.  However, in the back of your mind you know you must prepare.  Prepare for the day when your worse nightmare becomes your reality and they take him.  You prepare yourself for "the talk" with the surgeon...when risks of the procedure are discussed:  cardiac arrest, seizure, stroke, infection....death.  The waiting is the worst part, all you can do is pray and prepare.  Finally they take him away and you spend 6 long hours preparing for the next time the phone rings..what will they say, how will I handle bad news, can I really go home without him.

Finally you talk to the surgeon..."things when well...the next few days will be the most critical..." You prepare yourself, your husband, your family for what your baby will look like...motionless, tubes, wires, beeps, wounds.....plead with yourself not to cry...not now...wait till the sun goes down...wait till your pumping..alone with your fear.  You prepared for the battle...but now the real war begins.

In the hospital you prepare to take him home.  You attend classes, CPR, how to insert the feeding tube, how to give your 6 pound baby shots in his legs, how to use the feeding pump, the scale.  You prepare to recognize the signs of distress, heart failure, stroke, write down every word, make notes over notes, beg the nurse to please go over it just once more time with you.  You recite the medicine schedule over and over till you are saying it in your sleep...You prepare so that you can keep your child alive...if we can just make it to stage two!!!.....

Then you get the call...its time to come back.  Prepare yourself to do it all over again.  Prepare for the headaches, the crying out, the bulging eyes, the low O2.....prepare for battle yet again!!

Home we must prepare him...milestones have come and gone...he is still so far behind.  It's time to prepare his little body for things that should come naturally.  He isn't rolling over...why isn't he sitting on his own...he will not bear weight on his legs..."what am I doing wrong...I didn't prepare him enough..I failed him..I am strong enough for this."

I think as heart moms we are always in the act of preparing...but we are never really prepared.  We hold our breath each time they place our child on the scale...praying that they didn't lose any weight.  We hold our breaths each time we sit our child down to eat...will he eat anything today?  We hold our breaths each time we wrap the pulse ox monitor around their little finger...what if its too low?  We hold our breaths during each ECHO...just hoping the cardiologist smiles and says "see ya in 6 months"...we prepare for the worse; he lost weight, he will not eat, O2 is too low, he needs an MRI, Cath, we prepare ourselves to hear words like heart failure, transplant, valve replacement....

And so we prepare.  We prepare for the worse, for the best and for the unexpected.  We study, we learn, we share and we fight.  Our skins are thick, our hearts are full and our bonds are strong.  We prepare ourselves and we prepare each other.  It is the heart of preparedness that makes us HEART MOMS!!!

With my fellow heart moms, at CHOP's heart and mind education day...we are preparing for Fontan!!

Super X:  Preparing to take over the world


  1. This made me cry. Beautifully written and heart rending... we are leaving in a few weeks for CHOP to wait for Macsen's birth - so scared. I've tried steeling myself but all it does is kill my hope. Thank you for writing this. Love to see X doing so well

  2. Alexandra- please keep us updated on how things go and how Macsen is doing. It is a hard road, but so worth it. Best of luck and tons of prayers coming your way!