The Burden of Fear

My youngest son, Captain, lives in limbo.  He doesn’t know this of course, but I do.  I know it every minute of every day. 

You just thought to yourself, not when you’re sleeping.  

Wrong.

Yes, when I’m sleeping. 

If his snoring stops or even gets quieter I wake up as if a gun was shot off in the room.
He sleeps right next to me in a bed I made for him and I often wake up half a dozen times a night to make sure he’s still breathing.  Sometimes I just leave my hand on his chest or back until I fall asleep so I can eliminate the worry enough to drift off.   

He was born with breathing complications that brought him to the NICU.  

It wasn’t just breathing complications.  It was a barrage of issues that no one had an answer for.   

Breathing wouldn’t improve. 

His lungs were in the wrong shape and were so tiny.  

They were always “wet” from his heart.  

His enlarged heart with an open PDA.  

A PDA in itself isn’t such a big deal, but the best opinion we’ve had so far is that maybe it’s hiding a bigger problem because the PDA can’t account for the heart failure.  

Heart failure again.  

And again.  

And then the big crash we can't talk about.  

He retained fluids.  

His muscle tone was low.  

So low he didn’t even raise his hands or kick like a “normal” baby.  For weeks.  

His brain MRI was abnormal.  

Maybe the brain abnormalities meant something major, even a death sentence.  Maybe not.  

We might not know until he’s two, maybe later, maybe never.  

Enlarged kidneys, liver, spleen.

His foot has a crease.  

His neck is non existent.  

His eyes have “the shape”.  

He has a syndrome.  

So much blood it takes days just to get it all from him. 

Every.  Test.  Normal.   

Every single thing about my boy had something peculiar about it.
 From his head down to his toes - literally.
 Something off enough to cause concern, but not definitive enough to actually help him.  

After 49 days we were sent home.  No answers.  Just what to look for in the event of heart failure.

We were back in the hospital within a week.  Heart failure.  

During the ambulance ride I was writhing in pain.  I’ve never had such heartbreak that it hurt my body. 

My husband drove behind, crying in that primal yell you don’t know you have until something like this happens. 

Bargaining with God. 

After 2 days they let us go.  Without answers.  

3 days later we were in the hospital again, with you guessed it - heart failure.  

This time we were there for 10 days until we were sent home, again, with no answers.

I understand why people experiencing trauma share their suffering.  Ask for help.  Lean on friends.  Lighten the load.  

Now I understand even more, but when we were going through this I just couldn’t.  

It was my mess. 

  Our family huddled down and we protected the big festering sorrow that was a sick child.
The festering sorrow that is a sick child.

This protectiveness made leaving the hospital very scary.  

Everyone thought we were out of the woods.  

Every single person.  

Out of the hospital does not mean out of danger.  

My husband and I live with the potential of what could happen over our heads.  

Every second of every minute of every hour of every day.  

Like an old Bugs Bunny cartoon - an anvil just hanging over our unsuspecting heads.  Day in day out.
Will he die today?  Do we get another day with our baby boy?  

In our first few months home, I felt as though my chest would implode any time I had a moment to myself.  I would lay down (collapse) and scenes from the hospital would play on repeat.
Captain’s face when his lungs were filling with blood.  The beeping.  Every needle.  IV.  PICC line.
The feeling that would overcome my body when the doctors came in our room during rounds.  Terminology.  

Something like how post traumatic stress disorder is described.  

Every night.  

And while I felt it would be better to leap off a cliff than to live with this, I still had a sick little boy to tend to.  

I also had his five older siblings that needed their Mom.  A Mom who didn’t love any one child more than the next, and still found time to make meals, listen to stories, make crafts, take walks, laugh...   

I don’t know how I did it.  How we did it.  All I can say is we took Captain’s lead.  

He fought.  Every day.  We fought right along with him.  

He fought his own body.  Learned how to eat well enough to get him off his g-tube.
 Learned how to sit up, crawl, walk.  He started physiotherapy unable to roll over (either way) at 6 months old, and was discharged 16 months later, right on target for his age.
He still fights - every day.
His breathing is always laboured.  He still retains fluids.  Any time the temperature warms up, he loses every bit of his energy and can't move.  His little tummy will double in size, often, and stay that way for days.
At two years old, he struggles to communicate without any words.  

We fought the sorrow knocking at our door.  Refused to open up and let it in.  

We chose joy.  

Joy for each day we were lucky enough to have.  For the wonderful children in our home who were healthy.
 For a healthcare system that didn’t bankrupt us.  For the family members who lifted us up when we needed it most.
We chose joy…

Because that’s what my Captain chose.  That’s what he brought in to the house and filled it with.  

Joy.  Hope.  Light…  

And that anvil.  

That dark, heavy anvil over our heads.
Casting the shadow from the Psalms, the shadow of death.     

It makes answering flippant questions like “how is he?” difficult,  because most people just want to hear “fine”.  

I’ve actually come to realize most people won’t ask how he is unless they expect the answer to be “great!” 

  But, really, my boy is living with that anvil over his head.  

I know the peripheral part of my vision that can see the anvil won’t go away.  I can’t close my eyes to it,  

and I don’t want to. 

  Remembering our traumatic beginning makes each day, with it’s ups and downs, easier somehow.
Makes the heart meds, the monitoring, the worrying, the advocating, the frustration - easier.  

A blessing, not a chore.    

Martin Luther King Jr said  “I have decided to stick with love. Hate is too great a burden to bear.” 

  I believe that, in all its forms - and for my son:

I have decided to stick with joy.  Fear is too great a burden to bear.

For those of you who live this too:

Reaching out (in a very small way) and joining a group of Moms/parents who have babies with heart conditions made me look at our family harder.  I hear their worries, their questions, and think to myself, how do they do this?
Then I remember I have the same worries and questions.  How do we do it?

 Life for my son will never be normal - every time he has a common cold, has to go to the dentist, starts to choke, sleeps for too long, seems too agitated, every time his tummy gets distended, every time he cries too hard… is all under the shadow of that anvil.  But I’m not alone.  There are many (too many) parents living with sick children, and we are all striving to live in the present and be present.

And then there are the parents who do not live with the anvil.  Whose child has passed away.  The unthinkable.  The indescribable.  What makes the complications we fear real and shocks us to our core.  And we grieve with those parents like no one else can.  

Even then, especially then - we choose joy, and love.  Sorrow will not overcome.

You, fellow parents of sick children, are a wonderful and special kind of people.  Biological parents, adoptive parents, foster parents - we all live this.  Hospitals, sleepless nights, tubes, syringes, gauze. 
We bankrupt our bodies, starve our souls, and give every thing we have to help our little person make it another day.  
I just wanted to share (kind of like AA but for parents of sick children) and say thank you.  I am humbled to be in your company and pray that I can lift you up as you have done for me.  

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