Saturday, August 22, 2015

I should be...

I don't like the word "should."
It carries a feeling of inadequacy, 
a sense that something is wrong at the core.

It's a verb, 
used to indicate obligation 
or duty, 
typically when criticizing someone's actions.

"Should" is a shame word.

"I should be dancing with joy."

That's what I told myself when I woke 
on an August Tuesday.

a heavy sorrow pressed down upon me.

"I should be dancing with joy."

The tears came, 
I dressed, 
and took care of my responsibilities. 

Moving through the morning like a robot, 
I forced my mind to stay up-top,
surface level thinking only.

"I should be dancing with joy."

I sat in the dark room 
while the technician in training 
moved the ultrasound wand 
across my son's chest.

His pulsating heart displayed on the screen, a rhythmic black and white shape 
with occasional gushes of red and blue.
The pregnant senior technician 
sat in restless discomfort 
voicing tips 
and words of encouragement 
to the student tech.
My son lie quietly.
I focused on the screen.

"I should be dancing with joy."


"Here come tears again."

I exited the room,
allowing emotion to overwhelm me,
only when I was safe in the tiny, 
hallway bathroom.

"I should be dancing with joy."

"God had healed my son, right?"

"I should be dancing with joy, 
my arms lifted up, 
praising God."

"That's what a Christian should do."

"That's what the world wants, 
inspiring stories of survival."

"Everybody loves a happy ending."

"I should be dancing with joy."

We sat in the clinic room, 
my son now giant on the examining table, joking with the doctors and nurses, 
and never flinching with the blood draw.

We talked of chronic pain, 
the tracheotomy,
the upcoming sleep study, 
the medicines, 
school and activities. 

10 years ago, 
he took his last chemotherapy.

10 years ago, 
he was five, 
and bald 
walking on wobbly legs.

10 years ago, 
he was fed through a tube 
and never ventured far 
without his suction machine.

10 years ago, 
he had no eyelashes.

"I should be dancing with joy." 

10 years ago, 
I couldn't fathom being in this place. 

I had envisioned us hosting a huge celebration, 
filled with laughter 
and friends 
and good food.

10 years ago, 
I thought I would feel ecstatic, 
barely able to contain myself. 

"So how does it feel to be at this place in time?" a friend asked.

Without hesitation, I answered:
"It feels like a lot of children are missing" and the weeping of collective loss enveloped me.

"I should be dancing with joy."

When I look at my son,
I do not see his future.   
I literally see nothing,
a black void.

I cannot conjure up a vision of college, 
or marriage, 
or children.
I have carefully constructed a wall of 
"no expectations" to protect my heart.

So if one day, 
a stroke came, 
or throat cancer, 
or trachea cancer, 
or thyroid cancer, 
or skin cancer, 
or a secondary sarcoma,
or if heart problems developed,
 or kidney issues,
or if he discovered infertility,
or his neck was injured and he became a quadriplegic,   
I will be immune to the pain, 
the loss, 
the grief, 
I will not be surprised.

Or so my theory goes... 

But there is a permeability to my 
"no expectations" wall, as well.  

Indescribable joy may seep through, 
as his moment by moment future unfolds,
perhaps it will include college, 
or marriage, 
or children
 or even long term health.

Solid yet porous, 
my wall's fortification is crucial to survival.

"I should be dancing with joy", 
but "should" is a shame word
and I do not do shame. 

Not anymore...

This was written in memory of: 
Gage Dole, Jackson Hill, 
Lezli Foster, Rachael,
Danny Keagbine, Brad Ventura, 
Libby Shriver, Joshua Truini, Jeremiah Weingrod and many more.

This was also written with thoughts of those who are still alive and struggle daily:
McKenna Matteson, Madeleine O'Brien,
Rebecca Adams, Tony, Sam Day, Aly Cat,
Ryland Lampert, Justin Lambert,Faith,
Conner Leigh, Kate VanNice,Carly, 
Aaron Robinson,Spencer Shores
and many more 
and all the ones to come.