Saturday, November 30, 2013

pass......


{Here is my disclaimer.....I have been using my phone for photos more often than not recently and so.....there you have it. A plethora of cell phone pictures........yes, I am lazy.}



Parklen was given another pass today.....
four hours spent outside of the hospital.....

That kid was so excited for round two......
Smiling all the way.

He enjoys normal things so much...
Eating,
playing,
arguing,
running....
boy stuff.

You would not believe how much he enjoys every small detail......
mostly things that you or I may not even notice....
things we most definitely take for granted....

Things that we rush through....
tasks we find annoying,
time consuming......
are exciting and fun to a child that has never felt well before....

He enjoyed a science experiment,
some eating,
some block building,
car driving,
game playing,
eating,
walking,
running,
eating,
He really enjoyed his brother......
and his sister.

Driving in the car on the way to the apartment Parklen pointed to many things....
He ooooooed and awwwwed over things we passed....
geese,
trucks,
cars,
people on bicycles.....
an airplane in the sky....
It was a very exciting three blocks for him.

When I drove him back over to the hospital tonight, he was squealing with excitement over some Christmas lights....
The same lights that I drive by alone with out notice.....
They made him so happy, so excited.....

I am deciding to try and see things through eyes like him.
He appreciates the things we do not.....
He does not take the little for granted....
He is pleased and excited about things that surround him.
and it makes him happy.

Can you imagine living that way again?
There was a point when we all must have to some degree....
as children.

I want to live that way now.
Having big excitement over little things.
Refusing to take for granted the busy moments......

Staring at the Christmas lights,
the dirty geese....
the trucks and the planes....
and allowing myself to appreciate the small......


Paysen was so sad to see Parklen taken back to the hospital.....
I think we are in trouble with these two.
They have never been healthy together........
and after all,
they have a lot of time to make up for.........









Thursday, November 28, 2013

Give Thanks

Do you have something to be thankful for?

You know......really, everyone has something.

Most every human being on this earth is blessed in one way or another.
Although typically, we don't tend to concentrate on all of the things that we have.
We often sway the other way.....focusing on the things we are missing......the things we don't have.

I have many things to be thankful for.
Every day.

Today however......I have abundantly more.

As I sanitized the car this morning in preparation to pick up my boy for our afternoon tears kept welling in my eyes.

As I walked up to the hospital room....tears filled my eyes.

As I slipped on his socks and shoes and caped superman sweatshirt......
tears filled my eyes.


The emotions that I felt were overwhelming.......

It has been 46 days since I checked him into the hospital.
46 days side he has been outside.
46 days since he rode in a car.
46 days since he felt fresh air on his face......
46 days since he saw things like buildings and cars.........street lights and birds.

It is hard to explain the very nature of bone marrow transplant.....
It is hard to convey the extent of how fragile a child is after the transplant.....
It is commonly thought that once the transplant is complete, health and healing are quickly to follow....

It takes time.
It takes a lot of time.....
time for your body to build up any immunity....
time for tiny seemingly benign germs to not be a threat....
time for everything inside of your body to work perfectly....
we are talking one to two YEARS.......on average.

There are children that make it all the way through the transplant.....
some make it all the way home.....
they pick something up and end up in a dire state back in the hospital.....

There are children that contract common colds, flu....or the like..
Some of these kids do not make it.

Each time we go into the hospital we go into a special unit......
This is where Parklen lives......
Before you can even enter through the locked unit you must wash your hands.....
after which you must sanitize your hands.....
carrying anything with you?
you must wipe it down with bleach......
They have restrictions as to what can enter this unit.....

Parklen is protected there.

Its unnerving to take him out of this protection.
Dragging him out into a dirty world.....

I was nearing a panic.
My mental state was calmed a bit after talking to the doctors.....
They said, "If you weren't nervous about taking him out, we would think that you didn't understand what is going on.....that you didn't get it."

Once his afternoon IV meds were complete, we put on his mask and headed out.....
He was so excited to go.
He kept saying, "mom, I am so excited I could pee my pants."



He screamed , "Happy Thanksgiving" to each and every person that he passed by.
Shouted to those at the nurses station.........
those in the elevator.....
Each and every person in the atrium of the hospital got a holiday greeting from Parklen.




His smile was gigantic as I loaded him up in the car.....
It didn't matter that he was wearing a mask.....
you could see it in his eyes.

He smiled all the way to the apartment.....
He smiled all the way up the stairs.......
He smiled as he knocked on the door where Dad, brother and sis were waiting.....
He smiled as the door came open.....
He smiled as he ran around....
He smiled as he played with Paysen.....
He smiled as he ate his dinner......
He smiled as we face timed some of our favorite peeps.....
He smiled as he ate some pie.....
He smiled as he drank hot coco......
He smiled as he ate a hand full of marshmallows........

You could not stop his smiles........

We all smiled.

It felt great....all of us together.


As the time came for Parklen to return to the hospital, the mood shifted a bit.
Once I strapped him into his seat he said, "I wish I could just stay here forever....."
I smiled and said...."You don't want to stay here forever buddy.....before you know it we will be going home to Casper....but for today, you need to go back to the hospital..."
With a smile he agreed....

He wasn't as chipper on our way back up to the 7th floor.....


The few hours we had him to ourselves were so special.
Moments of taking nothing for granted....
Enjoying every small thing.....

Today my heart is so full......
I am thankful for everything we experienced today...
even down to watching small boys eating mashed potatoes, rolls and pumpkin pie......

Today I give thanks for blessings big and small.....
Faith, Family, Friends, and Food.....









Wednesday, November 27, 2013

Thanksgiving surprise.

I feel like a kid at Christmas time.

I would guess that I won't be getting much sleep tonight.......(and it will probably be the night Phin decides to sleep all night............)

I am just so excited about tomorrow.

I love Thanksgiving..... every year.
I love the family, the food, the chaos.......
I am usually the one to cook, and host.
and I look forward to it every single year.

This year I will not be hosting the extended family.............

We will be spending the holiday in Denver.
We will be spending the holiday at the apartment.
We will be spending the holiday with Parklen.......at the apartment.

He has be granted a four hour pass for mental well being......
He is doing that well.

Never did we anticipate the speed at which he is moving.......
He is just hurdling forward, and refusing to let anything stand in his way.

He is so happy.
We are so happy.

I am, of course....super nervous for bringing him to the apartment tomorrow....
After all, happy or not.....he is still fragile.
I spent a lot of time today wiping absolutely everything I possibly could with disinfecting wipes.....
Going above the regular cleaning guidelines and pushing to the point of Paysen rolling his eyes at me.....

It has been exactly 45 days that Parklen has spent in his hospital room.........
he has been wheeled down the hall once to have his lines removed.....
but he has not had sunshine rest warmly on his face for 45 days.

I instantly get tears in my eyes when I think about taking him out tomorrow.....
I am so happy.
I can only imagine a how huge his smile will be wedged between his newly acquired chubby cheeks.
I try to always find joy.....
Joy is what the Lord fills me with......it does not change with the circumstances....it comes from a place of knowing truth and what is in store for me when this life is over.....it comes from knowing Him.....
Happiness is a different emotion......
Tonight I have both.
I am so happy that Parklen will be sitting around the table with us.
Although, we would prefer to be in our own home and away from this situation......I cannot think of a better Thanksgiving gift than this.

Our entire family will be together.........
Outside the confining walls of the hospital.....
Away from the stark white lighting......
Far from the beeping of monitors,
and around one table.......

As if his progress weren't enough.......
This is something huge to be thankful for.


On a separate note........
never underestimate the power of a fake mustache..........
That paired with a brother appears to cause unstoppable laughs and fun!!!!!
I probably won't have to force these two to enjoy each other tomorrow!



The best is YET to be!!!

Sunday, November 24, 2013

Birthday {in cell phone pictures}

Ok, so turning thirty has never seemed great.
It always seemed, until recently.....to be a turn of events in the way of growing older.

The day I turned thirty was the best day I have had in as long as I remember......and the blessings have seeped over into today......

I started my day out with some Paysen and Phinlynn snuggles.......
Then headed over to the hospital to see my other boys....
Devan and I drank coffee together while Parklen snoozed away.

At about 9 in the morning a cab met me downstairs........
As I climbed inside, alone......i knew I was in for an adventure.

The hospital volunteers office was sending me down town.........
I was going to a spa.




I walked inside and instantly felt incredibly relaxed.
The sweet gal at the desk escorted me back to a Eucalyptus steam room......
I spent quite a while just sitting there......breathing in the steam and letting my body relax a bit more.

After putting on my given spa robe and sandals, I headed out to my appointments.

I walked behind the desk girl as she lead me up a flight of stairs and into the "relaxation room."
While I sat there in silence sipping on my lemon infused iced water, I found myself getting lost in the flames of the candle in this dimly lit room.

It was so calming to watch.
I had little worry.
I knew that all of my children were being cared for......
I knew that there was no place I was needed just then......and that tiny flame was just enough to occupy my thinking.....the flickering made me smile.
I cannot remember the last time I was sitting in a bath robe, relaxing.....
I cannot remember the last time I sat in silence....complete silence.

A woman entered the room and took me back for a massage.
She spent much time and effort working on the knots throughout my shoulders.....
I could just feel the tension melting.....
I debated just staying on the table for a nap after she had finished.....
Instead, I was lead back to the relaxation room...

A new woman entered and I followed her to another room.
I enjoyed a manicure and pedicure.....
I'm sure that the room full of women found me a bit weird....
I didn't have conversation to add to their topics....
There was not more than just a couple of words that left my lips the entire time.

I just sat there........
breathing.
I just sat there.
In a room where I was not needed.....
where no one knew one thing about who I was.
I just took in the moments.
The lack of the word "mommy"

The spa experience was so delightful.
It was so relaxing.
I needed that.

Afterward I jumped back into a cab and headed back to the hospital.

I spent some time with Parklen, who had still been asleep when I had left hours earlier.
He was grinning ear to ear with excitement as he handed me three presents.
"I wrapped them myself." He said as I studied the pink paper.
He could hardly contain himself as he watched me rip them open one by one.


After a while I headed back to the apartment.....
I watched as Paysen had some fun with silly string.
Phin slept across the room as we enjoyed one anothers company.


One of Paysen's most favorite friends came down to play with him and Phin while Devan and I went to dinner.

We went to a fancy restaurant.
I was generously gifted with a card for the BEST steak I have ever had.






Devan and I enjoyed each others company and laughter as we took in the scene.
Ten years worth of birthdays flashed before my eyes.....
all of them with this man.
Most of them sitting across the table from him for a celebratory meal.
I could see that 28 year old man..the one who first stole my heart.
I could see him every year thereafter.
His smile,
His hand touching mine.
His ever present sense of humor.
His love for me written on his face.....so very visible to me.....even through the dim lights.
This man.
My husband.
There was live music playing in the background......
Our food was so delicious......
As I stared at Devan I couldn't help but smile and I just could not believe how blessed I was and am.


Of course..........since I was turning 30, I treated myself to a creme brûlée........
It was worth every bite.

There was a moment when the waitress asked if we had big plans to celebrate on the town after dinner......
we both smiled at each other........
She couldn't have known that our after meal plans consisted a trip over to Target.........
did you know I love this store?

We spent a bit more time with Parklen and then headed back to the apartment....
Parklen's Nana was staying at the hospital and the rest of us at the apartment....
We spent the rest of the evening talking with my friend and watching Paysen dance.

As I laid in bed last night I thought to myself......
I could not have possibly had a better birthday.....
and then I woke up today.

I woke up to a video made by a friend.....
I have watched it many many times since this morning.
Each time, I cry.
I love these three babies so much.
watch the video here



Thought.....you know?  Things cannot get better than this.....
And then I spoke to Parklen's nurse.
The doctors declared today that the bone marrow is officially engrafted.

It is the news we have been waiting for.
It means so much.

It means that Paysen's bone marrow that was given to Parklen is being recognizing by Parklen's body as its own.
It is reproducing.
It is growing.
It is where it needs to be.

It means that Paysen's gift is not just working,
it is working quickly.....
It means that Parklen's days in the hospital are numbered.......

It means that God answers prayer.

It does not mean that the war is over.....
but this battle is won.
The fight for Parklen's health will wage on.....for years to come.
But this is no small victory we have......
this is big.
The official start of the rest of his life.....

Now that is a good gift.....
no, a great gift.....
the perfect kind.


and with that I declare the BEST birthday..................ever.



Friday, November 22, 2013

day +24

Tonight is the last night of my twenties....
you know what?
I had a great day today to bid farewell to this decade....

Parklen is doing so wonderful.
Not exaggerating one bit.
His counts have sky rocketed.
The bone marrow is doing a great job of finding its new home.

He looks amazing.
He feels amazing.

24 days out.
24 days of everyone waiting for him to look bad and feel worse.
24 days of him doing the opposite.

He is spending the night with his daddy.........
I can only imagine the fun they are having.

I got to see my big boy Paysen today......
the doctors thought it would be a good idea to let him see Parklen for a few minutes.
He wore a mask and the two of them hugging was priceless.

My handsome husband showed up with tons of goodies sent from home.
Such thoughtful gifts from friends.
I feel so loved.

Looking forward to tomorrow........
and I am telling you,
even if I tried....
I could not think of a better gift for my thirtieth birthday....
than knowing that my Parky is doing not good, but

great.....
that he is on his way to health......
that my family was all together in one room this evening.....

God is good.
He is taking care of us..........
He is answering prayers.
Right. Before. My. Eyes.