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.
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.....
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.
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