Monday, September 22, 2014

Because you're eight....

Today was a special day.

It was special for many reasons....
But, the biggest reason for declaring this day special was this boy.....



Paysen turned 8 today.
We celebrated all day today.
We celebrated him yesterday with a little party.....
He was allowed to choose only two friends....
the rule being that they knew about our family and would not show up sick........
So his two closest friends and their families joined our family in the park.....
There was cupcakes,
candy,
snacks....



There was a squirt gun battle.......which was Devan's idea.... "it will be fun for the kids"  That was what he said......Devan takes competition very seriously...even when his appoints are children......
They all ended up soaked and the kids deemed Devan a target and worked hard to bring. him. down....






We borrowed a bounce house....
Which was made more special by only having a few kids there.....
I will not lie....




I loved the bounce house.
I seized the moment when the kids left it empty....

Jumping with Phinlynn was beyond fun.....

and I love this picture, because there are very few moments that I get to let go.......




Today had breakfast....

lunch at school.....

birthday dinner...


.and ended with his first flag football game....











Dear Paysen,
     Buddy.  Today you are eight.  Eight years old.  You are growing up......certainly and far too quickly.  Today as I thought about the last eight years I felt overwhelmed with happiness.  You son, are the one who gave me my favorite name.....mom.  You changed my life 8 years ago.......and every single day since.
     You have been dealt a tough hand in life......and for sure, things haven't been fair for you.  You have spent much of your eight years here fighting to be seen.
     I want you to know.....I see you.  I see you for the wonderful, amazing, genuine little guy that you are.  I see your heart.  I see the way that you care for those around you.....the way you feel the pain that others feel.  The moments when you choke down tears in light of someone else's pain.  I see the way that you struggle between growing up and staying small.  
    You have had to grow up so quickly...and you could look at the kids around you....the ones your age and really most of the ones older than you.....you could look around at those kids and not find many who know pain like you.  That's tough, and really really unfair.  You have seen things that are scary, that are hard.  You have visited your brother in the ICU since you were two years old.  You have held his hand......you have prayed for him.....you have worked to make him smile.  You have stayed home while I took him to the hospital more times than I could count.....  You have lived back home away from us for months.....You have played games you hate with him when he couldn't walk. You have helped him lug around his oxygen and untangled the tubing....You have said goodbye to many activities and things for your brother's safety....
      You made a decision that others may struggle with.  You chose to take a part of yourself....your healthy and amazing self....and give that to your brother.  You chose to do all that you could to save his life.  You did that.  and not because you had to......
     I see a boy that is kind and generous.  I see a boy who rocks at spelling and dominates at math.....  I see a boy that holds a giant chunk of my heart.  A great dancer.... a graceful singer.  A boy who struggles with just being a kid.
    While the masses see your brother.....while the shadow that he creates can be dark and lonely.....I want you to know...I need you to know.....I see you.  All. Of. You.  It cannot be easy to stand behind and often in the background....but you do it.
   One day the clouds will part....the sun will shine brightly on your face.  The pain you have seen and the unfair realities of your life have and will continue to make you into someone that you will be proud of.  You have learned life lessons that many 20 year olds have yet to learn....
    If given a choice of who my first boy would be.....If I could choose whomever I pleased....I would choose you, I would pick you......every time.
  I love you.  I am proud of you.  I am thankful for you.
Happy birthday.  Today is a day to celebrate you.......but, If I am being honest....so is every other day.
You are my tiny hero....eight years old and full of everything that makes my life worth living.


Saturday, September 13, 2014

Ramblings and random pictures....

Sometimes you have days that are hard.....
Sometimes you can hide your fight behind a brave face....


Today was hard....
I hid my struggle for most of the day.
But in the end....the mask fell to the floor.


Sometimes the weight of being someones advocate gets to you....
Sometimes the tears are so heavy that they have no choice but to fall.

The stress of the last two weeks is taking its tole.....
School starting,
Parklen breaking his leg (have I mentioned that he broke his leg?)
Struggles....
Heavy things....
stress....

It is adding up.

Today, I was explaining my day to day to a friend.....
She was genuinely interested....
and as I mapped out what my day looks like I felt nauseous.
I felt like every word was just a small reopening of the wound that once was....

Its hard to explain, but there are things that most people find very "normal" that are far beyond any possibility for us....

As the day ticked on, the reopening got bigger....
and the scab that had been protecting it got smaller...
Things kept happening that reminded me of things passed.....
and the difficulty of the present..

I found myself opening an email this afternoon....
it contained some slides that were used to give a talk to hundreds of nurses in another state....
Parklen was one of the subjects of the talk and so I had requested to see them....
Each word I read broke my heart.
They contained medical details of Parklen's life.....or the lack thereof over the years.....
There were so many details.
And there were pictures....
Mind you, I am the one who supplied the pictures, but something happened to my heart when I saw those pictures paired with the words of medical explanation.

The moments of reading through that email felt like salt in my already opened wound....
They hurt.

And I realized today.........that pain will never leave....ever.
It is too real.

The fears of yesterday are woven into the fibers of my conscious.... If I am awake, there is a good chance that they will make their way into my mind.

The other day, Parklen was talking to me about being sick.
He said something to me that pierced through my very existence.
"Mommy, I remember all of the times you left me at the hospital.....I remember how sad it made me every time.  Even when I couldn't talk and I had the tube in my throat....I remember when you left. That was the worst thing ever mom."  It is probably important to say that I literally spent years by that kid's side....barely sneaking away to eat or shower..... every hospitalization I have been there....every procedure I have been there.....surgery, appointment....I have been there.
During transplant I had to leave....never very long and never going very far....  but just to the apartment down the street....sometimes for an hour...sometimes overnight.....  I would never leave if I didn't trust the nurse...or if Parklen had something important going on.   I would wait around until after shift change to lay eyes on the one who would be watching over my baby.....If I knew them...if I trusted them....I would sneak away.  

It was never easy to walk down that hall toward the elevator.  I never felt good about it.  But the masses said..."Amanda....you have to take care of yourself."  The sleep doesn't come easy in a hospital room....I have spent too many nights to count next to a window looking out over the lights of the city.....Curled up in a ball and praying for just a moments worth of rest.....

But.  Leaving Parklen was never something I wanted to do....rather something that had to be done...or did it?  Looking back I am sure that the few months of transplant could have been spent like all of the rest....I could have stayed with him every night.  I could have.....  but I didn't.

And hearing the words slip out of his mouth like the poem of a sad heart.......
hearing those words took the breath from my chest.....
I can never get those moments that I spent away from him back again.....they are gone.
I am sure that someday he will remember the times I was there....but the very idea of him thinking about the times when I left....too much.

Why?
Why has all of this had to happen to Parklen?
And why is this pain in constant replay?  There isn't a break.....and I think that people expect there to be.  That because we are home....things should be easy now right?

And back to the "taking care of yourself" bit that you hear....
How is it even possible?
It really is not.

When you are gifted with the job of having a child such as Parklen, you are not given sick days or paid vacation....you aren't allotted personal time.....
Taking care of yourself comes last....dead last.

First is the crisis at hand....
the child that cannot function as normal...
The meds, the worry, the care....

Next is your marriage and your healthy children......

Then is the other billion things that lie in the realm of your responsibility....
and finally.....
after all of that....
there is a tiny slot for you........me.

But often....when I reach that slot.....I am far too tired to lift a finger in my own defense....


Today it just all added up..........The sum of the parts came smashing together and the result was a mental meltdown.

Fears and stress crashing at high speeds and creating a mess of emotions within my mind.....

And for tonight I have nothing left......
nothing left but a prayer to a God that is So big and yet listens to my cries.....
A prayer for comfort....
A prayer for His gentle easing of my pain.....
And a smile in knowing that He never fails to show up.....
and that even in the moments when I feel alone in my struggle....He is there.