Thursday, June 26, 2014

How's he doing?

Do you know that feeling you get.....
the one inside, where someone asks you a question....
a question that is frequently asked.


Parklen lost his second tooth....and by lost I mean the dude yanked it out!!

A question that seems simple.....
but the answer is anything but.
Instead........
the answer is in layers........like peeling away at an onion.

This question.....
for me.....
is,
How is Parklen doing?

Could be answered quickly...."good."  or maybe, "bad"
but the answer is never simple.
There isn't a single word that could define his status.
Ever.

There is always worry.
There is always fear.
No matter how big or how small......

Devan is so good at saying "Good."
every time he is asked how Parklen is doing.
Maybe its because he is just great at seeing the things that are good.....
maybe its because it is just easier than trying to explain....
but Parklen can be sitting on the couch feeling fine, or laying in the ICU with a breathing tube and chances are, if you ask his dad how he is doing, he will say, "good."

I cannot do it.
I tend to lean towards silence....
not updating on his status.....
ignoring texts or phone calls....
not because I am trying to be a jerk....
but because its sometimes just too complicated.

I spent years of my life looking at and feeling lymph nodes in my son.
I spent years watching as they took over his body....
years being a witness to the nodes take over and destroy his health.
His disease lived there....
I studied scans full of nodes,
and looked at pictures of his organs that had been taken over by them.
I could tell you if one on his neck changed in size from moment to moment....even if it was just a little.
Chemo killed the disease....
and the nodes disappeared.
I have not seen or felt a single lymph node on my boy since then.

A few days ago I was doing my normal and obsessive exam....
as I ran my fingers down his neck.....they suddenly stopped.
There they were, rested on a pronounced ball beneath his skin.
Instantly my eyes filled with tears.
and my heart sank.

My biggest fear.
The thing that drives the car of my worry.....

Was it his disease?
Was it revving up to show its ugly face again?
Would it?

Of course,
healthy children often have lymph nodes.....

A call to Denver and my mind was mildly put at ease.

He is still recovering from the virus he had....
but he is moving forward.

His counts weren't as high as they had hoped at our last appointment....
but we go again next week....

I constantly feel like I am traveling through life on a treadmill...
walking quickly or slowing down.......speeding up to a jog....sprinting forward....
and yet....
barely moving.

Life for Parklen is still so fragile.
We have come so far....
We have so far yet to go....

A single node is enough to throw a reminder of our past in my face.
Where we have been.....
What we have seen...

Last summer in the PICU
A year ago we were living in a small hospital room....
Parklen was unable to breathe on his own...
He had a hole in his abdomen....
There he lay in a bed hooked up to so many things, on the ventilator....
His health was at its worst.

Last summer after his belly surgery

A year before that....
or two or three....
Visions of trials,
machines,
struggle....
It has been so hard.
All of it.
For six years.
Never will I be able to forget.
Nor, do I want to.

a couple years ago on a Denver trip

After one of his 30+ surgeries

This is how Parklen used to have to chill out at home....Oxygen and IV meds

Because where we have been is what makes where we are and where we are heading so amazing.
I never want to forget what it felt like to watch as life hung in the balance....
I don't want to forget the fear.
The fragility of life then.....and now.
Parklen at about age two during one of his hospital stays

We have big things in store.
Huge plans for Parklen.
We will move forward....
and whether Parklen is good, ok, bad or indifferent.....
it changes every moment.
and we will move on.....one moment at a time.
Always remembering where we were....
Always looking to where we will be....
but never forgetting to appreciate where we are right now.
Because thinking back or forward has every ability to steel what you have today.
Remembering the pain for me, opens up a door of gratitude for every small win....
every single solitary second of life.....
every fit thrown,
every mess made,
every smile,
every tear....
they are here....
but they are all a gift.




So,
the feelings I get from the simple question are deep.....
and the answer is complicated.
But, Parklen is alive....
he is smiling....
he is making mountains worth of boy messes....
fighting with his brother....
creating memories,
and he is living.


1 comment:

  1. Amanda,

    Your comments about suddenly finding a single swollen node on Parklen so resonated with me. I am a year and a half post transplant (I have a rare form of T-cell lymphoma). Just a week ago, while in the shower, I felt a bump under my arm.....oh hell....it actually didn't feel like a lymph node gone bad.....felt much more like a little ingrown hair cyst, which I have had in the past......but scared me to death, and felt like I needed to run out to rocky Mt. Oncology, or call the Huntsman Cancer Institute pronto. I have had almost 2 years of no evidence of disease.....and I have been doing so well all things considered, and then suddenly, for just a moment, it felt like it was all going away. Well, I finally calmed down a bit, palpated the bump a bit more, and then decided it was really a skin thing, not a lymph node. so I decided to watch it a day or so before totally panicking. Turns out it is almost gone now, and seems like it was only a little pimply cyst thing. Not Lymphoma. But wow.....reminded me again how fragile all of this can seem. And how precious each and every healthy day truly is. Your words about such things are so eloquent.

    Know I pray for parky frequently, and for your whole family. Thank you so much for sharing your life with us.

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