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.