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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Be Glad it's You

Be Glad it's YOU

I've had two babies in the NICU.  The trauma of seeing your beautiful newborn attached to life support, breathing apparatus, IV's in every appendage, can leave a wound that never truly heals.

My darling boy at 3-4 weeks

While my second NICU baby was hospitalized, I felt angry every time I saw a healthy baby.  Every time I saw a pregnant woman.  I would instantly judge them, and think to myself - they don't deserve their baby as much as I do.

It's hard to admit that's what I thought, but it's the truth.  My brain and my heart aren't always in synch.

I would see a newborn crying in their carseat in the grocery store and want to take the child out, comfort him/her and scold the mother for not knowing how lucky she was.  I would see pregnant women outside the hospital smoking, and want to scream "I did everything right and have a sick child - your child will probably be healthy and you don't even care enough to quit smoking!!!"

These thoughts didn't help me.  I knew they were wrong, and tried being extra kind to the women I was secretly loathing.  Kindness is always the answer, by the way.

I'm writing this to say to all the Mothers like me, I'm glad it was you.  I'm glad it was me.  

A week after being discharged from the NICU we were back in the hospital with heart failure.  When I was in the PICU (Pediatric Intensive Care Unit) there was a darling little girl in the room next to us.  During our 8 day stay, I saw her mother once.  She was there for half an hour.   That precious 11 month old girl was in a crib, in her room, by herself - 24 hours a day.  No Mommy singing to her.  No one letting her out of her crib to play with the toys that littered the room like a sad reminder of the life she should have been having.  Nurses would chat with her when they were checking stats, administering meds, etc. but they were busy with so many patients they couldn't devote much time to her.  

A volunteer came to my room, offering to cuddle my baby if I wanted to leave for a shower or take a lunch break.  I politely declined, but asked why she wouldn't be in the room next door with the little one who was always on her own.  She informed me that her mother forbid others to go in and play with her daughter.  She didn't want anyone else bonding with her little girl.  

I cried.

I stayed with my baby, night and day, and my other children would come visit us during the day.  Their hearts broke for the little girl next door.  She was in isolation, but that didn't stop them from standing at her door singing songs, and dancing to entertain her.  My two year old had to be pulled from that doorway.  Forced away.  She wanted to sing and play peek-a-boo non-stop with the baby on her own.  My older sons cried for her, unable to understand how something so wrong could be allowed in plain view. 

I'm not sharing this with you because there was a happy ending.  I don't know what happened to that little girl.  I'm sharing this with you to help ease the struggle some of us with sick children have.  Be glad it's you.  A Mom who puts everything on hold to care for their poorly child.  A Mom who cares enough to sit sleeping upright in uncomfortable hospital chairs.  A Mom who is there to listen to doctors, specialists, nutritionists, nurses on how they feel your little one is doing.  

Be thankful that a sick child, who needs love more than ever, has YOU.  

It's hard to hold down a little arm while a needle goes in.  It's heartbreaking to watch a little one be sedated to help them deal with the pain they are experiencing.  It's physically exhausting to tend to the needs of someone who is helpless, letting your needs come secondary or not at all.  

It's more difficult to know that there are children without a Mom like you.  Alone for bedtime.  Alone for needles.  Alone for doctors coming in and out.  

Take a deep breath Mommies.  You are the best thing that ever happened to your child.  You know them better than any doctor, you care for them better than any nurse, and you love them like no other.  Be thankful your child has you, and keep up the good work.  

- I know there are many fathers who can relate to this, who care for their children when they are sick.  My husband is one of those fathers.  I am not trying to exclude you.  I wanted to address moms.  There is something deep within the heart of a mother that feels responsible for their child being sick.  Something we ate during pregnancy.  Something we did.  Something we thought!  Secretly festering in the depths of our hearts is the fear that we brought a helpless child in to this world to suffer.  We can barely admit it to ourselves, let alone any other living soul.  I know you fathers are the ones holding things together.  Taking the other children to the library so they have some "normal" in their lives.  Getting oil changes.  Managing life so that Moms like me can stay by their child's side.  You are every bit as important as the Mom - believe me, you are.  I just wanted to reach out to who I know, who I can definitely say - yes, I relate to that.  If my husband ever writes a post like this, he can address it to Dads and Dads only.  Keep up the good work Daddies - I know this world would crumble without decent fathers who do the right thing when it is the hard thing.  -






If you can relate to this story, be sure to read
 The Burden of Fear