Sometimes I want to throw my head in the garbage.

It’s been forever since I’ve written.

It hasn’t been intentional…I just needed a breather from my life and I needed a moment to enjoy the privacy that often I dismiss when I publish my daily dealings and stories of Evan.

His cleft surgery was a success.  He looks amazing.  His beautiful face is more spectacular than before….I wake every morning to the face God always intended me to love.  For whatever reason…He needed us to take a journey to get there.

Perfection.

Evan stopped breathing twice during recovery.  Only an hour after he was done from the 8 hour surgery for his face and mouth, he suddenly stopped breathing.  We were in the Cardiac Intensive Care Unit, Craig and I stood bedside as we oohed and ahhed over our boys’ new face, and suddenly the monitors beeped…and didn’t stop.

His oxygen dropped down to zero.

A flat line appeared on the screen where his breathing rhythm should have been.

His room flooded with doctors, nurses…Craig stood by yelling at Evan to breathe.  I stood in the hall sobbing…unable to breathe as well.

A terrible reaction to the pain meds caused my boy to stop breathing.

And it happens again…only an hour later…

Well…

It’s all too much.   I wasn’t ready to recount that moment until now.

We recovered at home and during our recovery period of 4 weeks, our house was plagued with stomach flu that hit my daughter and Evan and me.

Evan’s case was much more severe due to his recovery from his surgery and required a trip to the emergency room.

After 3 weeks…we finally got to breathe.  Thinking our life was about to hit the upswing of normal I’ve been craving for months…

Then, I get a call from my sister, my best friend, that she has to have surgery.

Another storm…

I flew to be by her bedside as she endured surgery.  I gave my mom a hug as she sent her child off to surgery.  We waited anxiously for days waiting for the pathology report to let us know it wasn’t cancer.

I was prepared to write about Evan’s great report from his plastic surgeon.  His palate and lip had healed beautifully and for once in  my son’s life, “Everything went as planned.”

And then…Boston.

The city I fell in love with years ago…Faneuil Hall…Boston Commons…was attacked.

Days later…our neighbors in West, Texas suffered a tragedy of their own.

I couldn’t find it in me to write about anything.

I felt a little hollow…a lot hollow.

I went ahead in with my life.  Coffee filled mornings, sounds of little feet running with toys from room to another, little voices calling out Mama…every 5 minutes.

I’ve been doing my best to give my family normal and to give me some normal lately.  Now that we are, hopefully, at least a year out from a surgery (any surgery – cleft and heart), I’ve been doing what everyone else does on a daily basis.

Live.

But in this new life of normal, I realized my normal is punctuated with bits of abnormal.  It was almost easier with Evan a crooked smile to explain his shortcomings of why he’s not taking a bottle, eating like a normal kid…maybe people would think his face had something to do with the fact that he’s not walking and talking like a regular toddler.

And then…in this normal…I find my crazy is amplified.  Without the comfort blanket of having cardiology visits every few weeks or a specialist visit or a pediatrician visit around the corner…my heart mama neurosis is on overdrive.

It’s not unusual for an  hour to be filled with these thoughts:

– Evan ate a lot. Must be cardiac exhaustion.
– Evan didn’t eat enough. Must be heart failure.
– Evan doesn’t want to nap. Must be a sign of sensory processing disorder from all the surgeries.
– Evan took a good nap. Must be heart failure.
– Evan looks blue. Must be heart failure.
– Evan looks pink. Wonder if he’s overcirculating.
– Evan’s crying. Oh sh!t – don’t get dehydrated.
– Evan happily playing. He’s delayed – not walking, not talking…where is he at now on the Hawaii Developmental scale.

It’s exhausting…and I just want to throw my head in the garbage and play make believe that I live in the land of regular folks.

Where teething and visits to the doctor for shots are the biggest fear I have for my child.

Where outings outside my sanctuary called home aren’t met with apprehension and fear…just normal.

Where side ways glances at my little dude are for admiration and not inquisition.

It’s difficult balance I’m trying to achieve.

One where I long for normality…but one where I’m trying to find where the abnormal is my normal.

One where I need acknowledgement of my son’s hardships…the true and dire nature of his medical condition…but one where all I want is for the world to see him as nothing but a normal kid.

I update his Facebook prayer page with the latest milestone, a random picture of our goings on trying to give the perception that all is well in my world of Evan.  But at the same time, I long for prayers and positive thoughts for the next cardiology appointment (that’s 2 weeks away), for the next heart surgery (that could be less than a year away)…but those requests are just a reminder that our world isn’t like everyone elses.

And that’s all I want.

For our world to be filled with sunscreen and swim lessons, play dates and Playdoh, joy and tantrums…all things of the toddler world.

But, my mind is having a hard time letting go of the worries of the Heartland…the abnormal that is our normal….oxygen levels, pink or blue toes, breathing, eating, drinking, weight gain/loss…all things of the heart mom world.

It’s the worlds that are colliding in my pursuit.  Every worry of the Heartland mixing and mingling with the simplicity of everyday life.

It’s head spinning.  Mind boggling.  And sometimes…all I want to do is throw every thought, every worry, all of it…in the garbage and call it day.

And give my kid the gift he deserves…what he fought for…to just live.

 

 

 

Comments

  1. I just want to hug you. I’ve experienced all you speak of and it’s all normal feelings. That doesn’t ease anything, I know.

    Praying for you.