Tuesday, February 9, 2016

Purpose....

Three years ago I was about 7 months pregnant.
I had just returned home after spending a good amount of time with Parklen down in the hospital.
He had spent time in the Pediatric Intensive Care Unit, Struggling to breathe and fighting...yet again for his life.

There was a certain instance that occurred during this time that replays in my mind time and time again... The teams of doctors that had known Parklen for many years and the teams that had just been brought aboard were struggling to find solutions to the problem that was Parklen's health. They were all running in circles, trying to communicate their own skill set...trying to apply their own speciality to his case.  It reminded me of those stationary pools the you see on infomercials late at night when you can't find sleep...where the swimmer is swimming their hardest, but the current is working so hard against them, that they remain in the same place.

I was fragile during this time. Pregnant, stressed, sleep deprived, worried, nauseous, and emotional. I just could not take it all.....  I spoke with someone I had become close with at the hospital....and requested a meeting with all the teams.  I spent hours preparing for the meeting....probably a good 48 or so. Writing out my thoughts, making outlines, lists of questions....and so on.  I was nervous. Doctors can make you feel this way, often times without even intending to.  They are smart, I mean they attended school for like a billion years...educated. Their thinking is sometimes on a separate level than the average person....  they think in terms of cells and tests and whatever their specialty may be.  They deal with and see hard things, and in order to be effective, they have to detach their emotions a bit from each situation that they face. These facts, can make them seem cold...or heartless.. It can be hard to speak with them.  But. When your child is fighting for their life, you do hard things.  You find the courage to speak out....and you fight for their life too.

I remember sitting in the room with Parklen the night before.... In my lap was a book that Devan had brought me from home. Its red cover and black binding soft to the touch... The contents within were even softer.  Each page turned revealed another prayer that had been sent from home. A friend had typed them all...individually and bonded them together in this book. People from home, crying out to God on Parklen's behalf....  and they were recorded here. My eyes cried and my soul weeped... I found peace and strength throughout the pages.  Some prayers were written from people I knew well, others from people I hadn't seen in years....there was one from a child....but they were all from the heart.




The next day was nothing short of a miracle, in the business of the hospital life to get all of the teams together...at once. Stuffed into a tiny room at the end of the hall in the PICU. There we were, seated around a large table....important physicians...nurses, and me.


I was extremely under qualified for such company.....and yet, God helped me through. I was able to set things into motion for my son.... because it was my purpose. It had been my purpose for four years leading up to that point..... I was there to protect him. To be his voice while he lay unable to speak, to set things into motion. To scream until I was heard...to cry out until action happened. Parklen needed me to be so....and I was. Over the next few weeks, his health drastically improved.  And then, it plummeted.

Life got hard, and death became a more apparent possibility with every passing day. However, I knew my place. I knew my purpose. I worked tirelessly for my son, fighting along with him.
Daily administering medication around the clock, taking blood samples at the kitchen table, managing oxygen tanks and breathing treatments, taking care of feeding him through a tube, driving him to frequent appointments for 4 to 6 hours worth of IV medication. I slept very little. I had two other children to care for as well.

But I did it.
Not by my own strength...but by the grace of God.
It was what I had to do.
It was my purpose.

I often look back to these days and I just cry.
The tears are heavy as they fall.
Each one pulling out the beginning of the next.
These were the hardest days of my life.
As a mother,
as a wife,
and a woman.....

I have been reflecting more than usual over the last few months....
because life is much different now.

I have gone more than 2 years with out sleeping next to my son in the hospital.
He hasn't slept there either.

I have gone more than 24 months with out the buzz of an oxygen concentrator coming from my son's room...
He can breathe on his own.

I rarely have to pull out a sterile kit to access the port in his chest...
it only requires a flush once a month now, and not medicine every day.

I no longer have to add calories to his food to try and help him gain weight...
he eats enough all on his own....no tubes required either.

Its been ages since I spent my nights sleeping with a hand on his chest....counting breathes in fear that his disease would stop them....

Years since I heard the tireless beeping of the ICU....
scrubbed down to enter a hospital wing,
gowned up to go near my baby...

It has been a good amount of time since the hardest fight of Parklen's life...and mine.

And yet,

I cry more now.
I am more tired...
I am restless....

The stress that comes after the storm is so very real.
I lived a good portion of my life in a constant state of fight.
I lived on very little for myself and everything for my family....and especially for my son.
and after all of the time spent fighting....
I seem to have crashed hard into a pit.

I have abundant joy for the health that has found my son.....
although there are still worries beneath the surface,
I am just so tired....and worn from years past....that I express them quietly.

and the truth is, I don't know how to be this.... normal.
I don't know how to worry about things like packing school lunches and how to juggle multiple student/teacher conferences. Because the worries I am used to trump the norm. I am used to trying to figure out a way to convince an attending to allow my son into his brother's hospital room even though he doesn't meet age requirements....or how to juggle a family split apart by hundreds of miles.  I am used to scheduling my life around medication times.... and its hard to change that.

I have to write this because I have to tell the truth.
I am having a hard time.
and it doesn't mean I am ungrateful for where I am.
It doesn't mean that I am not filled with thankfulness for this new life.
I am just struggling...
Because when you spend years in the trenches......
when you spend every moment of your life afraid that your child will die....
you cannot just shut it off.
You cannot just move on.
Its an adjustment....every single day.
Its a moment by moment search for your new purpose....
Its a day by day game of catch up on years without sleep...and life with out order.

and I am just trying to find my way,
Thankfully....I have an amazing captain on this life ship....who will help me to find my way.
But good things don't often happen over night...am I right?


Two years ago today, we left Denver. It was sooner than they expected....
Parklen had recovered well from the bone marrow gift from his brother and we drove home...
We exited the interstate into our town....and as we turned onto our street...we were greeted with screams and cheers from people that lined the way.  It was a cold winter day...but the love warmed our arrival...  We all released purple and black balloons, Parklen's favorite colors... and watching them fade away into the sky represented a new beginning for us all.....  Out with the old as they say...

All day today I have been thinking about this day. The outpouring of love. The support.
The faces of our children...the face of my husband...as we were all gathered together at home...
Our new beginning....beginning.... That was two years ago...

This evening, a friend stopped by.  She came with a gift..
Months ago I had asked her to take on a project that my heart could not handle...Parklen had outgrown almost all of his super hero clothing...most of which was purchased for his time in the hospital during transplant....  I am a wreck every time I clean out my kid's closets...I can literally see them in every piece of clothing and my mind is flooded with memories.....getting rid of them has always been  hard for me.

The super hero clothes though, I could not even dream of parting with.  They represented a time that was a turning point for Parklen. I could see him wearing all the shirts, pajamas and even a hat...during chemo and days trapped within his room walls...I remembered the day that a friend sent him a superman backpack...and I knew that something had to become of these memories.

This friend of mine is one of the most genuine people walking this earth...all who know her would agree. She is also an abundance of talent and love....I knew that she was the right one to trust with my idea.
I stuffed the clothes into a bag and they made their way to her house....
I have been eagerly awaiting the result....
Tonight she walked through my front door and presented a quilt to Parklen. I held back the tears at first, but as I began to run my fingers over the blanket words came....

"Do you remember when Christina gave you this..."
"Can you remember these pants? you wore them in the hospital for years because they were your most comfortable...."
"Parklen, can you remember these p.j.'s from your Aunt Whitnay?"
"Oh mom, look at the shirt from Nana...." it was all there. It is such a beautiful gift. Many moments of trials, woven into something soft and beautiful and simply perfect. I cried a little...
It could not have come on a better day, than this....the anniversary of our arrival home....

As I tucked Parklen into bed this evening...he asked me to cover him up perfectly with his perfect blanket....  and that perfect blanket covers up my life....
all of the memories...some hard, some not so much.....I must find a way to stitch them together in such a way that all you can see is how they fit with one another.... how the hard parts bring perspective to the good days...how the thread of sickness can mesh with that of health....how the overall picture is what counts....and the memories...make the present meaningful.  Each scrap of life coming together to find it's purpose....

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