Monday, August 28, 2017

Thrown in...again.

There are times when I am sure I have met my limit.
Recently, I am having some of those times.
It seems to be thing after thing and happening after happening....

Last week was super tough.
Exhausting.
And although I don't like to talk much about myself...here's what happened.

I had 2 days that I spent in the hospital with a kidney infection...
Turns out a kidney infection is a lingering nuisance when you're pregnant...
Wait a minute, let me back that up a second.....have I EVEN told you guys that I am pregnant? Its shared on my personal Facebook, but I don't think I have actually written about it.
Yup. Pregnant. Number 4. Almost to the third trimester.




That started my week.
Then I went home from the hospital and packed to take Parklen to his hospital.
The kids and I loaded up and headed to Denver.
I started having continuous pain in my belly over our first night there and it escalated the next morning. By the time the kids and I had made it to check into Parklen's appointments the pain was worse. I ended up having to leave my children (all THREE of them) with my friends who work at Parklen's clinic. I always talk about my friends who I see in Denver....they are real. Parklen's care team and the people that we have known for the last 9 years....they care deeply for us and us for them. They didn't even blink as they said, "Go take care of yourself, we've got this." I didn't even worry about whether or not they would be ok.

After being monitored and watched for 3 hours I was released with a diagnosis of false labor...caused by my kidney infection and get this.....stress...  STRESS?!?! What?!?!

I cried a lot by this point that day, but the tears had just begun.
I was scared for my baby....scared for my family. Scared about being alone.
As I walked out of the hospital and walked back into Children's I was exhausted.
I made my way through the clinic and found my kiddos...well taken care of, fed, happy...
I enjoyed a few minutes with them before Parklen's doctor appeared.

"I think its time to try and send Parklen to school again."
Words that I knew were coming. But words that stopped my heart for just a moment.
We HAD to treat ourselves to ice-cream after the day we had....

I was reminded of the last time I had this conversation.
I wasn't ready then.
I wrote about not being ready Here
I cried about not being ready.

I had a feeling that it wasn't the right decision.
And you know what?!?!
I was right.
It was too soon...
His body wasn't ready.
and I knew it.
But away he went.
and he ended up sick again....

Now we start over.

When people see Parklen they often say, "He looks so good." and I want to scream.
I want to scream "HE LOOKS GOOD BECAUSE WE KEEP HIM SAFE."
He looks good because he isn't in school, around the boogers and the germs.
He looks good because I watch his every move.
He looks good because he is at home.

I don't feel good about sending him to school.
Even though its just for half days.
I don't feel good about "seeing how well he does."
Or "seeing how he handles sickness."

Sometimes we have to let things go.
Sometimes we have to let other people make decisions because our judgment is clouded with love.
I know that being at home every day is not ideal for my son.
I know that he needs to have more experiences.
Knowing does not make it easier.


So again, here we go with my precious glass egg.
My now bigger version of my tiny miracle.
My super hero.
My Parklen.

Letting go is my least favorite thing.
Letting go of Parklen is my hardest challenge.
The fact that my tear ducts have nearly run dry can attest to that.

So with a recommendation by two doctors now, to take it easy and ease my stress.....for the sake of this unborn baby and my sanity....I have to wonder how?
How can I?
I don't know.

By prayer and submission....
By faith and belief.

By an understanding that, although I know that God's way is not always the easy one...that His answers are not always the ones I hope and pray for.... Parklen's story has already been written and the pages that are to come...the ones that I have yet to read are already there.
As I turn each one...
crisp and new in my hands...
each one...
day by day...
I can rest fully in the fact that God is there.
Already.
He is in every letter...every space...every inch of every page.
Because Parklen is not just my baby.
He is also HIS.
And as much as I love him...and wish to protect him,
God loves him even more.

Pray for us as we go through the next few weeks.  As we find our new normal....again.
As Parklen is thrown back into a classroom...into public....into an uncontrolled environment.
Pray for protection,
for peace,
for success...
Pray for Parklen.





Monday, April 3, 2017

Snorkel....

I have had a week.
You know the kind.

My snorkel has been taking on water with each wave that hits...
making it hard to breathe...
And the brief moment after it fills,
I panic.

Trying to remember the next step...
Scrambling.
Until I remember...
And then I force the water out....
Push it with prayer...

I breathe.

I felt completely numb this week in Denver.
The words,
The plans,
The advice...
It felt ice-cold to me...

I feel tired.

I feel frustrated.

I feel defeated.

Parklen is not complete.
and although that is true,
his illness is not at its worst.
He is not as bad as he once was.
Which makes things tricky.

It means that....once again,
his future is uncertain.
It means that for now,
We wait.

We maintain,

We tread water.

Clearing the water as it comes...
pushing it out so that we can breathe.

The doctor talked about some future options and places we may have to go...
but the if and the when are not known,

We convinced him to sign off on Parklen playing baseball this summer.
He said, "Yes, lets give it a try. He will probably get sick...but lets just see."
So.
There you have it.

The depths of the way I feel are hard to explain...
It makes the "how was Denver" question difficult to answer...
It makes the "how is Parky" question hard too.

For now,
We are just going to be excited about baseball.
Excited for the chance for Parklen to be included.
and we are going to focus on that.

Yesterday at church the sermon was "How do we respond to unanswered prayers?" 
It was a message spoken straight into my heart....
Because God doesn't always answer things in the way we'd like.
and we sang my favorite song Mercies in disguise, because if I am being real...
Although hard,
although difficult and oh so painful...
I believe with my entire being that this is true..

Sometimes 
blessings come through raindrops,
His healing comes through tears,
a thousand sleepless nights is how you know that He is near...
and sometimes...
the trials of this life,
are His mercies in disguise.

It is never easy to find peace in the chaos..
or calm in your storm...
but when you do,
God is there.





Thursday, March 23, 2017

Perspective.

Around November 12th or so of 2008 God began to weave into my life a very important collection of words.

There are many words on the list.
All important.
All thick with meaning...
All lessons.

But there is one word that seems to be repeated time and time again...
through out the list it appears...more than once...many times.
The word....

Perspective.

I was given the gift of perspective.
Not that I was asking for it or anything.
It certainly wasn't mentioned in my daily prayers or over coffee with a friend...
I wasn't looking for it.

As the gift was handed to me, my arms gave way under its weight.
It is heavy.
Its outer shell isn't soft or smooth..
more like the thick and scaly skin of a snake...or maybe a porcupine.....

But,
whether I liked it or not,
The gift was given to me.

It took days to open its first layer...
a crash landing into a pediatric hospital for the first time...
weeks in a medically induced coma for my baby.
Breathing machines and emergency surgeries...
and I began to see it.

What was,
and what was not...
important.

Over the months and years the layers continued to peel away...
Each experience shedding light on another part of the word.
Perspective...

I remember the first time I heard the cries of a mother losing her baby.
I hear them still.
They echo in my mind...
they dance around with memories of faces of parents who had just kissed their babies for the last time.
I see them.
I hear them.

I feel the hug of the dad who lost his son and cried out to me, "He was such a good boy."
I feel it.
Still.

Perspective.

Its understanding that these things are happening.
Every.
Single.
Day.

It's knowing that whatever your every day problems may be...
there is someone that is praying for what you've got.

It's teaching your children that tomorrow may never come,
so don't ever waste today.
That time spent together is the best gift...

Perspective is shown most bright for me,
when I look at Parklen.
When I see an eight year old boy pray for a little girl.
When he prays so much that his eyes fill with tears...
When my eight year old son comes to comfort me....
When he knows more about death and more about life than most people three times his age.

Perspective is when Parklen sees that death is not the end.
When his words hit me like a smack in the face, "Don't be sad for her, she is with Jesus and that is where we all want to be...be sad for her family who will miss her forever."

Over the past few weeks I have been able to watch my son show Christ's love to another. I have watched him with such pride and love. Watched as he put aside his childhood and stepped into the shoes of comforter.....of friend.
He lives a rather lonely life.
Stuck at home.
No school,
No activities...
Not many friends...
But my God, he knows how to be a friend.

and he shows me perspective.

There are not enough words in the world to describe the way we feel tonight.

When I told Parklen that his friend had passed away, he said..."My heart is broken into a million pieces."

I've never kept death from my children. I haven't ever had a choice in the matter....because our lives have run beside its river banks for 8 years. They have seen it first hand. They have known so many children who have been lost to illness. Parklen more than the rest of them. We have spent days praying for children together... He has spent a lot of time telling me about the comfort he felt from heaven when he was so incredibly sick. That somehow, God always was there with him and he knew it. We have talked through many difficult nights...and our conversations always lead to this, With Christ...death is not the end.

The years that I have lived have taught me much,
don't waste a breath...
really, just don't.

Don't take time or people for granted...
LOVE each other....
all. the, time,
No matter what.

Ive learned that good people get sick,
That amazing people lose their children....
That in the world of childhood illness....anyone is fair game.

Be thankful.
For it all.
The good and the bad,
the difficult and the easy.
They all work together to form the person you are meant to be.

Heartache sucks.
No way around that.
But God is so so big...

Im thankful for the fits that are thrown,
the messes that are made.
I am thankful for the lives that have been woven together with mine.
Im thankful the maturity of my children.
I am thankful that Parklen is here with me.

I am thankful for a little girl,
that I believe was never human but an angel to begin with.
I am thankful for the moments spent with her.
In her very presence was a peace that cannot be explained.
For her family.
I am thankful that God saw fit to bring us together.
I am thankful that Parklen had her as a friend.


I am thankful that she is with Jesus...
and remembering that with Him, is where we all want to be.

💛💜💛💜💛






Thursday, March 16, 2017

Bitterness



Bitterness takes over,
when you feel that life's unfair.
When your baby is sick,
or your bills aren't paid,
maybe the grey is taking over your hair.

One thing after another...
it always seems to be.
Questions,
rarely answers...
Puzzles that are often missing a piece.

Bitterness leaves a taste in your mouth,
that can not be easily replaced..
it can make the best things taste sour,
the good taste bad...
and the perfect things go to waste...

It is so easy for me to find myself here...
wading through the murky and muddy waters...
Where I stand, bitter and angry...
and alone...


It takes a desperate plea in the form of a prayer...
A good shake all the way down to my core.
A friend,
a memory...
and sometimes...
maybe just a little more.

It helps when I remember
all the places I have been,
The highs,
the lows...
and everything between.

8 years can seem like a lifetime..
and also as a fleeting moment.

When you look forward to tomorrow...
When you strain your eyes toward yesterday,
you miss what's meant for you to see.

When you focus on the wrong...
there is no room for the right.

When you try to steer your own life,
you're telling God He can't...

Surrender is the hardest part...
Knowing to let go.
Remembering what all the hurt has taught you..
you already know...

Where you've been,
has brought you to...
Where your meant to be.

And where you are,
 will lead you to,
 God's promise of victory.

One day there will be no sickness,
no blood draws,
no pain,
no worries.

No waiting on test results..
wondering what tomorrow brings

When that day comes,
whether here or there..
When the waves of life drift out to sea...
I will dance with praise
and sing His glory..

In the mean time...
I pray for release from bitterness..
For the gift of focus..
I pray to enjoy each moment as it comes.
To be thankful for it all...
the good..and the bad.

Its in those moments of thankfulness that I find my greatest blessings.



💜💜💜💜💜







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....