Sunday, October 29, 2017

+1,460

It has been 1,460 days since Parklen's transplant.
Four YEARS.
I lose my breath when I think about that.











 It has been four years since my Parklen was dying....
since we prayed that God would spare his life....

Four years.

That day is fresh in my mind....and I believe that it always will be.
I remember the sights,
the smells,
the sounds
and the feelings as if they were happening today...right in front of me now....

That day is burned into my memory.
Always and forever.

Where have we been in the four years since that day?
We've traveled many mountain highs,
and gotten reacquainted with the valleys.
We've watched miracles happen,
and hardship return.
But through it all....
We have remained safely in the hands of God.
The creator,
Our creator...
He has held tightly to us as our life ship has sailed through the waves...and rested calmly on still seas.

In four years we have watched Parklen change from a dying boy, to a survivor.
We have watched as his story has changed the lives of many...
his story that is far from completion.

Parklen has a gift with words, and a gift with perspective.
He is happy to be here.
Happy with opportunities that come his way.
He doesn't waste his energy...

He is in school for a couple of hours a day...
his class voted him onto the student council, which upon learning of this....brought tears to his little eyes.
He played baseball this summer,
He has friends and confidence....

but...

He still has hard days.
Quite a few, really.

He struggles to make it through just a couple hours of school....
He falls asleep often on our drive home...
He wakes up feeling tired and run down...
He never wants to miss school, but has to often.
His neck shows signs of lymph nodes that grow and shrink, (reminiscent of his disease)
He travels to Denver every 4 weeks for a check up and long infusion...
He takes daily meds,
He has bad dreams....
He tries not to remember where he used to be.

His fight is not over,
our fight is not over.
He has won many battles...but the war goes on.

Paysen has grown so much since the day he donated his marrow.
He is no longer a small freckled face boy...
He is taller and more mature....
But when I look at him, I still see him that way.
My little hero.
My brave little boy who takes on the stress of the world....

He gets more now,
understands more about his brother....
He is starting to comprehend the weight of the gift he provided Parklen.
He worries about him in different ways now...

Devan is done with school and working in his chosen career.
He has a normal schedule that includes dinner with us each night and breakfast in the mornings...
He is no longer burdened with the stress of achieving a masters degree...
He's made it.

Phin is no longer the tiny baby that we all hold and pass around...
She is a pixie still for sure...
But she has grown into a little girl that is full of life...
She still remains our shining light...
I think she will always be that.
She came when we needed her most and she continues to brighten all of our days.

Our new baby...
not yet born,
but changing us already.
We look forward to meeting him and kissing his face..
introducing him to his super siblings...
helping him to find his place in our incredible story....

and me,
I'm not the same woman that I was four years ago.
I have grown more tired.....weary.
I have changed for sure.
Ive grown more lonely as the time has passed.
Beaten by the waves of our surrounding seas...

I have, however, remained the same in my faith.
Believing that God is writing an incredible story for His glory...
That me, that our family...that Parklen are playing an important part in that story.
That all of the pain from days passed and the pain that continues today is for something.
For His something.
That no matter how bad I might hurt some days...
no matter how hard things might be for Parklen now and then....
The struggle is worth it.
It has to be.


Four years.
1,460 days.
35,040 hours.
2,102,400 minutes.

A lifetime.
A moment ago.

Celebrating the victories that our family has lived.
The miracles,
the blessings.
Being thankful for who Parklen is today...


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.