Three confessions from a Heart Mom

I've been meaning to post about congenital heart defect (CHD) awareness all month, and there is no day like the last day of February to get it in.

Actually, it just so happens that while I've had some thoughts formulating in my mind, the dream I had last week brought up so much emotion, that I needed to put it all in writing.  So here goes...

My son was born with a condition called Hypoplastic Left Heart Syndrome (HLHS), where the left side of his heart did not fully develop in utero.  He underwent major reconstructive heart surgery starting on his third day of life, again at 2 months, and the last stage at 2 1/2 years.

So many of the emotions I went through during this period have been buried deep in my soul in order to function at a normal level. But every now and then, I get a pang in my heart that forces them all out into the open.

Like when I hear the beeping of a pulse oximeter machine and the anxiety I felt during those sleepless nights when my baby struggled to breathe comes rushing in like a wave of grief.

Or when I see a toy in the baby section and break out sobbing in the middle of Walmart because I recall how it brought just the tiniest smile to his face while he was being poked and proded.

Or when I had to relive those moments in the hospital after his second surgery in my dreams. Seeing him so vividly. Disoriented from the meds. Head pounding from the post-Glenn headache, his thin little body lying on the hospital bed covered in bandages and lines.  My powerlessness so palpable it chokes me up until I awaken.  And I lay in bed deluged with sorrow.

Until it is time to get up, and go about my day as usual.  Because here is my first confession as a heart mom:

1. I secretly suffer from PTSD.  I don't talk about it often because most people can't understand or think everything is fine now that your "past it".  But here's the thing: you NEVER get over watching your child go through something like that.  You remember every moment, every smell, every detail of the surgeries where you hand over your child, unknowing how, or if he will return.
You don't simply forget the endless weeks spent away from your other children, sitting in a hospital desperately trying to keep up with the medical jargon and decision-making.
You don't forget seeing your child covered in lines and bandages.  You don't forget the chest tubes or the pain in his eyes.  It haunts you for years, even when he is doing well.

And he truly is doing well now.

2. So well that I sometimes experience survivor guilt.  I call it confession number 2 because I haven't expressed this out loud before.  During my pregnancy, I prayed so much that this nightmare would all go away and not be true.  And when I couldn't pray it away, I prayed for a miracle.  For my baby to soar through his surgeries with flying colors.  And he did.  God answered my prayers and calmed everyone of my fears.  My boy is 5 years old now.  He has achieved every milestone and if it weren't for his scar, you would never know there is anything different about him.  He IS my miracle.

But I know this isn't always the case with children with HLHS.  I read the stories of the angels that didn't make it, or the ones that struggle to the point of needing a heart transplant.  It breaks my heart.  I grieve with the moms that don't get to watch their babies grow.  And at the same time I feel slightly guilty for being so blessed.  I wouldn't change a single thing about how our journey has transpired, but sometimes I wonder what I did to deserve this miracle.
Is there such a thing as too blessed?  And if I am too blessed, does it put me at more risk to lose everything?


Which brings me to my last confession.

3. I still worry.  Children with HLHS are never "cured".  The surgeries are meant to circumvent the fact that the left side of the heart can't pump oxygen to the body.  Children with HLHS are always at greater risk when facing common illnesses like the flu; risk of stroke; risk of liver fibrosis; risk of needing a heart transplant later in life.  Risk. Risk. Risk.
And I worry about how he will deal with life as he grows.  What if he is ashamed of his scar?  What if he wants to try extreme sports but physically cannot do it?  What if? What if? What if?
So, while I try to keep my calm, some days I am overwhelmed with anxiety.  Because our battle is not over.  Every day with my heart warrior is a miracle.

I know there is inheirent risk in everything.  And no one can control anything by worrying.  I remind myself of this often.

So I tuck all this anxiety deep in the same little box where I keep my guilt and everything else that comes along with the PTSD of being a Heart Mom.
And I bury this little box in the part of my soul that rarely sees the light of day.
Because as a Heart Mom, I want to spend every second I can watching my warrior conquer life.

If you havent noticed, here's a bonus confession, (#4) I have a hard time hiding how proud I am of him.  He's my superhero.