Beat.

I have written, re-written, deleted and thought and thought and thought about today’s post for the past couple of weeks.

I have sat at the keyboard asking my fingers to type something poignant or something funny or something heartwarming….just something.

But, every time I have sat poised ready to talk about today…I found myself in a tornado of emotions…unable to grasp onto one of them…

anger.

fear.

joy.

resolve.

four of the few emotions swimming in my head as I remember a year ago today.

August 27, 2012 – Miracle Day.

August 27, 2013 – One Year Heart Anniversary for my boy.

Strange.

I thought it was strange, too, when I was first in this journey. I watched as other’s posted about their child’s “Heart-versary” or “Heart Surgery-versary”.

I thought, “Why would they want to celebrate the day their child went through open heart surgery?”

It felt grim.  It felt a little twisted.

Why would they want to celebrate a day like that.  A day that was the most awful day of my life.

I was just sent Evan’s surgical notes from his open heart surgery.

Like a novel I couldn’t put down…I hung onto every word in that 4 page, single spaced, 12 font document like my life depended on it.

In ways…I guess it did.

Every second was accounted for.  Every small move was documented.  Every cut. Every stitch.

I pictured my boy…so small…only 7 months old…16 lbs sopping wet…with the courage of David.

I pictured him being “worked” on…lights bright above his perfect head….his sweet hands and feet covered by surgical drapes…hands and feet I kissed…

And then I got to the part that made me stop, catch my breath, and look away from the page.

27 minutes.

The part where it stated how long my boy’s heart wasn’t beating.

27 minutes.

Where a machine (aka bypass) was acting like his heart and lungs while the surgeon worked to mend his heart.

27 minutes.

Where I sat in a room, 4 floors from my boy….whose heart wasn’t beating.

My son’s heart wasn’t beating.

My son’t heart wasn’t beating.

And there wasn’t anything I could do about it.

But, pray for mercy over my son.

Once I composed myself, I went on to read the rest of the document.  Other words were hard to read…painful.

And then the part that I found comfort in…”the heart returned to normal rhythm.”

His heart beat again.

His heart was beating again.

And it was in that moment that I got it.

I understood why so many Heart Mamas celebrate this day.

It’s because it was the day their child’s heart stopped beating…but beat once again…

I didn’t have a choice that day when I handed over Evan to the surgical team.  The odds of him making it to his 5th birthday are grim…but I knew without the surgery there was a 100% chance that he would die.

I also knew with the surgery Evan still may not survive.

I also knew that the type of heart Evan has…even after all the work that has been done to it…still needs another surgery to help it along…and even then…it’s not fixed.

But, on that day…when I handed him over…I promised Evan he would be ok.

I promised Evan that no matter what, I’d love him forever.

And he promised me he’s fight until his last breath.

And by the grace and mercy of God…that day has brought us to this day.

A year.

Our one year anniversary to the day my son’s heart beat again.

A year where my son bounced in a bounce house, ate an Oreo, felt sand between his toes and smelled the salt air of the ocean.

 

A year where he’s found the joys of a sipping milkshakes out of straws and splashing in puddles after the rain.

A year where he suffered in time out after pulling his sister’s hair or from throwing his food to feed his pups.

A year where he got messy in sidewalk chalk or after dinner dessert.

A year where he heard story after story at night night time with sister.

A year where he learned to give kisses and hugs.

A year where I hold him everyday, smell his sweet Evan smell, tell him I love him…tell him I’m proud of him.

It’s been a tough year…for me.

I’ve battled with demons of that day and his diagnosis.  The statistics have me paralyzed with fear.  The reality that he has to have another open heart surgery – where they will stop his heart again – weighs heavily on my heart.

I find myself feeling polar emotions – joy and grief – all at once.  Every.single.day when I see his chest and the tube coming from his stomach a wave of sadness lands over me. He’s suffered so much….and his suffering is not over.

And then as I trace the scar that stretches from his neck to almost his navel….he giggles uncontrollably…the light touch of my hands tickling him. And the wave of sadness is suddenly replaced by immense gratitude that he’s here.

I’m sad everyday.  Most nights I stay up and lie awake wondering about his next surgery.

Friends and family say I shouldn’t feel that way…I should enjoy that Evan is still here.

But, they don’t know what it feels like to know their child’s heart stopped beating.

And I do.

I also know what it feels like to hear the words, “His heart is beating on its own.”

I know that in that moment I was a part of a miracle.  And the feelings of relief, of gratitude are immeasurable.

And that’s why I celebrate today.

Because after the tears of sadness and pain of what Evan has and will go through…

Because after the statistics that say he won’t make it to kindergarten…

Because after the surreal truth we will knowingly and willingly hand him over again…

I know that his heart may stop…

But it will beat again.

It will.

 

You are worth it.

 

 

Comments

  1. Oh buddy this is beautiful. Happy Heart Anniversary!!! I’m sorry that you’re sad every day and I hope I haven’t tried to slight those feeling. I love you and I’m here to listen any time. I think Evan is AWESOME and you have done an amazing job this past year.