Monday, July 21, 2014

driving.......

I was driving last week.
The car was quiet....
the road was open......
and I found myself with time to think.


Time to think about whatever came to mind.
I let my thoughts wander...here and there.

I thought of different things,
some from the distant past,
some from the day before.

And.
With no good reason at all.......
I started to cry.

Maybe it was because there was no one there to explain things to.....
maybe it was the silence that sucked the tears from my eyes.......
maybe it was the pressure of trying to always hold them in.
Maybe.

Either way,
there they were.....
hundreds of tiny wet and salty tears...
rolling down my cheeks and landing softly in my lap.

I started to think about this one particular day a little less than a year ago.....

Parklen had begged for a cheese burger....
he wanted to drive through and pick it up.
And after weeks upon weeks of him not eating,
after pound after pound dropping from his frail frame....
I jumped at the opportunity.

I can remember him sitting in the car,
staring at him in the rear view mirror....
The other kiddos were with Devan and it was just Parklen and I.

As I watched his reflection in my mirror my heart felt sad.
Sad because there he was,
frail,
gaunt,
a feeding tube branching out of his nose and taped to his cheek,
his eyes dark,
his shoulders poking sharply thru his t-shirt.

He tried to squeeze a smile from his lips.....
he expressed his excitement of fulfilling his craving....
and as his small and weak voice called out...
"Thanks mommy for bringing me here...."
I choked down my sadness and smiled back at him.

I placed our order,
and drove forward.
As we sat and waited for our bag full of greasy food, Parklen began to stir.
I turned my head to see his expression that was full of doom.....
"Mommy I am going to get sick......"

There we were, waiting in line.....
and with no time to spare I jumped from the car and ran around to him....
scrambling to find something that would be fit to house his stomach contents.....
I barely found it in time.... after spotting a bag full of baby wipes on the seat, I acted quickly....
dumping the wipes out and holding the empty pampers bag up to Parklen's lips....
He lurched and shook....
probably thankful that it had been days since his last solid meal and the only thing to get rid of was the nutritional formula that we pumped into his feeding tube every few hours....
His head lifted up, and his eyes looked as though they were screaming out to me...."Why me mommy?"  There, hanging from his face was the tube that just moments ago was placed strategically into his nose, down his esophagus and into the opening of his stomach.....the vomiting had thrown it from its place and it had begun to travel out into the world.....
As his sad face looked up at me, I knew all too well that the hanging piece of plastic was my responsibility......
I took care of it quickly,
the best way I knew how.....
replacing his feeding tube and watching as his struggle began to slow down..... 
I grabbed a pile of wipes from the leather seat beside him and wiped his face.....
My mind was racing as I remembered where we were...I looked around to notice that the cars ahead had moved along and we were holding up the line......
I walked around back to my side of the Honda and climbed into my seat.
I put my sunglasses on before pulling forward to the window.....
I looked back at my boy,
the same vision as before but just a bit sadder.
His previously pale face was now flushed and stained with tears.....

I apologized to the happy woman at the window...
revealing little and just stating that we had "a situation."
She smiled......and said, "Oh honey, not to worry.....I've BEEN there...."
I forced a smile but my thoughts were not so pretty......
sure, I'm sure you have been here...I bet that you have replaced a feeding tube in the back seat of your Honda whilst waiting for a cheap two dollar cheeseburger for your starving son who almost died a month ago and who you are trying to fatten up so he is healthy enough to receive a bone marrow transplant next month that may or may not work to save his life........
I knew that she meant well....
I knew that she was trying to put my mind at ease....
so I smiled.

I drove off feeling completely defeated....
A pampers bag filled with regurgitated formula behind my seat.....
A grease stained bag, filled with a burger and fries resting on the seat beside me.....
knowing all too well that it would remain untouched...
There were no words spoken between my fragile boy and I, just glances....

We pulled into the driveway and I picked him up from his car seat,
he wrapped his stick skinny limbs around me and we headed inside....
After going thru the motions of making sure that his feeding tube was in the correct place I helped him snuggle into his blankie......and kissed his forehead as he drifted off to sleep.

Years upon years of experiences like this.....
that is what I have had.
A simple trip for a burger.......complicated.



As I drove down the road last week........these were the thoughts I had.
The moments,
the trials,
the difficulties....
all captured in the salty droplets that gathered on my lap....
I had to let it out......and to be honest......I didn't have much of a choice, each time I tried to swallow it all down the tears fell faster......

I cried for a good 30 minutes straight before I finally got a grip on myself.
After my eyes dried up, I felt a little bit lighter.

The truth is,
no matter how good or great or amazing or wonderful my life is....
No matter how good, great, amazing or wonderful Parklen is doing......
Those days....
Those moments....
Those memories.....
are a part of me.

They are woven into my existence.
They have shaped me into my present self.
God has used them to stitch me together and make me better....

and not a day will ever go by that I don't remember.
Sometimes remembering hurts.
Somedays it hurts more than others....
but each day it hurts.

Because those days of pain,
of fighting for my son....
they don't just disappear....
They cannot get swept under a fancy new rug of health.....
They have stained the very floor that I stand on....
They cannot be removed.

I have thousands of painful memories....
ones that still have the power to make me cry.
Moments that are frozen in my mind....and that I can see just as vividly as the world right before my eyes.....

When Parklen curls up beside me,
when his head full of blonde curls presses into my neck....
when he holds my hand and whispers, "I love you mommy...."
When he smiles at me,
or tells me I am the best mom ever.....
I am reassured.

I am given reassurance that my pain,
that Parklen's pain....
was not in vein.

I know that the fight was worth it....
I know that the pain makes that smiles worth so much more....
I know that God did not waste a single one of Parklen's tears......
when he sits at the kitchen table and talks about how God healed him through his brothers marrow....
When Paysen talks about how God created him so that he could save his own brother.....
When I see the faith in my children....
When I see that knowledge and life that they have...that reaches far past many adults that I know.......
They get it.
and I get it.

I fear for the day when I no longer feel the pain of days passed....
I fear for the day when my now is overlooked....
when I have trouble appreciating my life.
When I fade into the crowd of taking advantage of the average.....
We are all surrounded by people....some of them get it....
but most of us humans are walking around searching........
ignoring the things that live and breathe right before us.......
looking for whats next,
striving to find happiness,
failing to see that average is something that many people are praying for.....

I never want that.
and, on days when I begin to feel annoyed.....
on days when I start to fill out my complaint card on life.....
I force myself to look back,
force myself to live in the past for a moment and remember......

Parklen is moving forward.
He is growing.
He is full of giggles and dance moves.
His days are filled with eating, laughing, playing and torturing his brother.....
He ran through our sprinklers yesterday and the joy was too much to handle!

These things.......
that I am sure are happening in homes all over the place....
They are our dream come true......







Monday, July 7, 2014

A new kind of Independence. . .

We went to Denver last week for Parklen's appointments.
Things went super well.
He looks good and he acts good.....
and even though his numbers aren't as high as the doctor had hoped.....he was given a little bit of freedom.....







Camping is a lot of work.
There are lists and lists of things that make it difficult.....for the average person.
Camping gets a little more tricky when you add in list of rules for a fragile child in tote.....

But...
 For the sake of memory making....
in the name of love....
We took the plunge.

I have never experienced a difficulty quite like the few days spent on our adventure.
I was gifted with visions of happiness that I have been missing for years....

and I was plagued with the duty of balancing Parklen's joy with rules to keep him safe.

I cringed with visions of our glass egg with sand in his fingers....

and then bursted with happiness as I watched him run along the beach...his smile bursting through his mask.....

I hesitated as he put his first toe in the glassy lake....
and then laughed out loud as his giggles echoed over the water......

I fought back tears as he cast out his fishing line.....
and then let them fall as he reeled in his first fish....

I battled my fear as he sat next to the fire....
and then let it go as I watched the reflection of the flames dance across his smiling face.










The boys fell quickly into their roles of wild healthy boys....
they ran and laughed and swam and played....

They built moments together....

Our little girl splashed her first lake splashes and took in her first camp fire....







Devan spent time doing his favorite thing.....and filled his belly with fish.




I felt the sun on my shoulders and warmth in my heart.





The rules were hard.
The list was long.
It was anything but easy.

Don't let him get his face or head wet.....
Keep his mask on almost every moment....
Keep him away from people...
Don't let him bate his hook....
Wash his hands obsessively....
Shower him as much as possible...
Don't let him sleep on the ground....
Don't let him be barefoot....

That is literally only a fraction of our restrictions....

and I came home more exhausted than when we left.....
but I came home with children filled to the brim with memories...

We came home with a few more experiences that didn't require a hospital.
We came home with smiles....
and the markings of a little too much sun.....


Sometimes hard work pays off in ways that are indescribable....
The struggle was deep.....
so deep that it cannot be overlooked.
To throw your fragile child into a world that is out of your control...
To go from keeping him safe within your own home....to watching him run free in the big world....
all the while following close behind as you pick up the pieces and work to keep him whole....
As I sat on my towel atop the hot sandy beach, I could not stop myself from looking around and wondering......
Were these other people as thankful for this time as we?
Sometimes the simplicity gets lost in the chaos.....


If you asked Parklen or Paysen how the trip was,
they would not mention one restriction....

they only smile and say that it was the best!
That they had fun and cannot wait to go again....

There are no more trips planned for us....
nowhere in our near future....
He isn't ready to be in that world exclusively just yet....

But this trip was enough to fill his cup.....

So thankful for a God that provides moments and days like these....
that gives us a bit of sunshine when we need it most....

Parklen had a few days of independence....
a few days worth of normalcy...
and an abundance of fun.....

Because Independence comes in many ways.....
Blessings come in different forms....
and having an adventure such as this is something to be thankful for.