Wednesday, February 1, 2017

The Road.

8 years is a long time.
Its nearly a decade.
Its made of almost 3,000 days...









It has been 8 years, 2 months and 22 days since Parklen first showed symptoms of illness.
It has been a long road.
So, So long...
I can remember most parts of it....more than I wish I did.
Its a road that has been made up of hills and valleys,
of pot holes and construction.

7 years ago this very month Parklen was diagnosed with a rare disorder.
It was a relief after over a year of illness with no explanation....I felt like a weight had been lifted. The road was bound to grow wide and bright...
We ran with that diagnosis for some time.
There was monthly trips to Denver, terrible drug infusions that kept him alive but made him feel awful. We spent weeks upon weeks and months upon months in a hospital. Infection upon infection...illness after illness. Surgery after surgery...
He grew more and more ill as the days passed...
And it was made known, that the diagnosis was not correct.

There was so much time with Parklen fighting for his life.
So much time watching a machine breathe for him in the ICU...
Even at home he required oxygen just to breathe....
He needed medications to keep him alive.
Piles of pills every day to keep his body in check.
And we lived each day trying to give him peace and happiness as he struggled.
We watched as he was slowly dying.
Unable to breathe,
Unable to fight infection,
Unable to live a normal day.
His own body killing itself.

And the days got worse....

And when we could watch him no longer,
we took a desperate risk.
A transplant...
His brothers bone marrow...
We were told, it may not work.
We were told that he very likely might not make it to the other side.
But we knew for sure, that without the try....he would die...
So we took a leap.


He punched doubt in the face and rocked the transplant....
We had more than a year of health and peace.
He was a little boy...cuts and bruises, broken legs and lost teeth...
He got dirty and smelly and loved every moment.

He went to school.
He made friends,
he grew and loved and played.

We all danced in the light of his healing....








He breathed on his own...
He laughed more than most kids...
He lived as though every single day was an amazing gift.

One day he got sick,
just an average infection...
The type that all of our kiddos pick up from school...
But it took him a long time to recover...
and when the infection was gone....he wasn't the same.

So began the cycle.

Infection after infection just halfway through his first real school year...
and they didn't stop.

With every one, he felt worse. and recovered more slowly.....

Nine months ago began the bruises...and the bleeding.

And he felt worse.
Tired.
Sick.
Tired.

They had no answers...no clear reports....
Everything has always been such a mystery with Parklen...
So they decided on a genetic test.
These tests are complex and in depth and hard to understand.  And even if I tried my best to explain...it would most likely make little sense...
They look at parts of our genetic make up that most people never even know exist.
They tested Devan and I to see if we had something that could've been passed along...
They hoped that there might be an answer to Parklen's mystery....to give direction of how to help him.
They told us it was about a 10% chance they would discover anything....
But Parklen was worth the try...

They did.
Despite the odds...They found something.

A genetic mutation.
A genetic defect that explains everything he has experienced in his life.
The infections,
The immune issues,
The breathing,
The sickness...
The everything.

Rare (Can we all appreciate the pattern here? Parklen can't be bothered with average)
There has been 100 people with this syndrome....
100 known.
Out of the billions of people that have walked the planet...they know of a hundred.
There is little data...
There is little research...
There is not much known.


A possible treatment..
Bone marrow transplant...
Remember..Parklen's done that...
and his problems persist..
The maintenance depends on the kiddos...
But really is about what we do now.
Blood tests and infusions.

When they sent the test out, I began to pray.
I prayed for an answer...
For something that had been overlooked but would be simple and easy to fix.
I prayed for a chance for Parklen to return to where he was a year and a half ago...

We got an answer.
But not what I had hoped.
There is no cure.
For what is known today...there is no end to the life we are living now.
Increased risk of certain things...
Continued seclusion...
Precautions.
Home bound...
Maintenance to take Parklen from day to day...

I cannot even begin to describe to you the degree of desperation I feel in reading through the packets that were given to me today.  I cannot begin to describe to you, or a doctor or anyone else the absolute degree of sadness I feel in knowing that there may not be an end in site....

This is the road...

Its not guaranteed to be smooth or paved with ease...
BUT...
It is guaranteed to lead us to where God wants us to be.
Which, if we're being honest...is not always an easy place to go.
But Ive seen what Parklen has been through..what he has shined through.
Ive seen the people who's lives he has touched.
Ive heard the testimonies of faith that Parklen's story have helped to write...
I know... that although this road seems so scary and awful and unreal to me now, God is going to work it all out for the good.

Please pray for Parklen.
Pray for us.
Pray for me, as I struggle to keep my head up in the midst of this news....
As I struggle to accept that what is....is.
Because although I know who holds our future....its often hard to let go and trust what I cannot see.
When a friend knows exactly what you need at exactly the right moment.
 I was sent this by a friend....




5 comments:

  1. Prayers, to you Parklen, you are such a strong and brave fighter. You too, beautiful mamma.

    Prayers to your entire family.

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  2. Praying for your family.

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  3. No words. Prayers of moaning that only God can understand. HUGS

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  4. I'm praying for your family and solutions!

    Skye

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  5. Praying for your family & miracles for this sweet boy!

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