Friday, January 25, 2013

Im ok!


It feels nice to have lots and lots of people thinking of your family and praying for you.  It is refreshing to know that, at a drop of a hat, people will be by your side! 

I have been receiving so many messages and texts......filled with concern for our family, for me.  People are worried about Parklen for obvious reasons.....but people worry about me too. Possibly because I am six and a half months pregnant....possibly because people cannot imagine being in my place.

I just want to let everyone know....I am OK!  I will admit, it is a bit harder being here while being pregnant.....It is a bit harder to contain my emotions.....I have to be sure to eat regularly, and I have to make 1.5 billion trips to the bathroom......but I am doing OK!

Being alone down here isn't as bad as people think.  I am so used to it. I have spent over four years living this lifestyle.  If I ever needed, Devan would speed down in a moments notice.  I don't want that.  I feel like it is super important for him to be with Paysen.  When I think of our unfortunate situation, and how I cannot be with my eldest son, the only thing that brings me comfort is that Devan is.  We used to send him to be with family, he would be shifted around to different houses......causing more stress.  Now, he is in HIS home, with HIS dad..... and he is being taken care of.  I feel like, this is not the life that I want forever....and having the one half of our family that CAN...living as normal as a life as possible is better for our future.

I could ask Devan to drop out of college.....(Im sure a lot of people think he should) I could insist that he come along....I could arrange care for Paysen....but my heart tells me no.  My heart tells me that Devan is creating a better future for us, regardless of how hard the present may be.  My heart tells me that Paysen needs to be with at least one of his parents.....my heart tells me that I can carry this hospital burden....I have a lot of encouragement.....a lot of support and I can do it.  My faith has carried me a long way, and it will continue to do so.

My other boys will head down for the weekend to visit.  Paysen will be unable to see Parklen....Flu season and his age will prevent it.  But he will get to see his mommy and Parky will get to see his daddy.  Truth be known, it is probably best that he doesn't see him anyway......the vision of his little brother with tubes coming out of every direction and being unable to speak...may be haunting to our six year old.

When I sit alone here, I feel peace......peace in the moments of not having to speak.  Not having to try and explain what is going on with my son.  Feeling the liberty to "ignore" a text or phone call.  Breathing deeply as I watch my baby.  Not having to see sadness on someone elses face as they look at my son.

I appreciate all of the offers to join me down here at the hospital.  I know that, if there comes a time when I just cannot be alone....someone will be here for me.  That time has not come.  Please, continue to pray....please continue to think of our family.  The prayers are the best gift.....

And please remember......I am OK.

Parklen is going into surgery this afternoon.  They have to take some more samples of his lungs for further testing....and they have to work on his ears to relieve pain and help with his hearing.  He hasnt changed much the past day and a half.....still in the PICU, still hooked up to breathing machine...still being pumped full of meds......Only time will tell how long this current venture will continue.....

Wednesday, January 23, 2013

Not so common..,.,....

Parklen and his daddy.....four years ago.....
Yesterday I entered a place where I never thought I would be again.  As I walked the long, stark white hall I felt a sense of de ja vous that I have never experienced before.
My mind flew back to four years ago.......a life time away.....to a time so scary it surpasses all other experiences in my life. 
I was alone then and found myself alone again.  No one to help bare this weight in this moment.  The sterile smells overwhelmed my nose, the sounds of monitors pierced my ears. Parklen and I were on our way to the Pediatric Intensive Care Unit. 
Parklen....today.

It has been weeks since Parklen felt well enough to do much.  Weeks since we saw his tiny spirit.  Weeks since he was able to run around and not be constrained with wearing his oxygen.  He had been getting worse, much worse.  He was scheduled to be admitted this week for some testing and observation.  Things don't always go as planned. 

Sunday night was the breaking point.  He was so bad.  He was working so hard to breathe and struggling to even get comfortable enough to rest.  As I took care of my boy and prayed for him I heard the still small voice whisper, "Go"  I knew it was time to head down.. I knew that he wasn't getting all he needed at home anymore.  I also knew that it was a holiday the next day and the chances of his team being available to take him in would be slim. (with a kid like Parklen you want HIS team dealing directly with his care....his disease is so rare that you want at least one person that knows him personally assisting in decision making.) 

I had been up the entire night with my boy and knew that I would not be able to make it to Denver on no sleep.  I sent in an email to one of Parklen's team and he and I took a little rest.  When I woke up, I began to pack.....knowing all too well, what to bring.  One call to his care team and it was in the works......they were there and they would be there to help. 

Parklen, resting........
I tried not to look at Parklen too much as I loaded up the car.  Deep down I knew it was bad.  With all of our stuff inside, I said goodbye to Paysen and headed off down the road.  A stop at Devan's work to say goodbye and we were off. I hadn't made it even a mile before my tire began to flatten.  A stop at the tire shop was the start of a very frustrating day. 

Arriving at the hospital we rushed in to see his team.  One look at Parklen had one of his main ladies tearing up.   He was bad.

It took one full night and a constant call for action on my part to get things rolling in the right direction.  With Parklen screaming, "Its too hard to breathe" and watching him struggle through every breath I insisted that something be done.  It turns out, when you are pregnant and a little crazy people listen.  With in a few minutes of my cry out.....the ICU team was walking through the door.  They took one look at him and decided within seconds that he needed to be in the intensive care unit.  So we headed down.

As they pushed his bed down the hallway I watched him and felt afraid. 

Once they got him situated they put him on a bipap machine.  This is a machine that breathes for you in a way.  It pushes air into your lungs and helps maintain a steady flow of breathing.  It was such a fight to get the mask on his face but once it was in place he immediately calmed down.  He said that it felt better and I knew that we were in the right place.  Parklen was able to breathe with out struggling.

Parklen and I....four years ago.  First time I got to hold him after a week of medically induced coma.
Today was an emotional day.  After no improvement over night it was time for more action.  A test came back to show that he had tested positive for the Rhino Virus which, as most of us know is nothing more than the "common" cold.  It is believed that this tiny virus triggered an outpouring of his disease and, in turn, landed him in respiratory distress and snugly placed in the ICU.  It doesn't feel good.  Maybe someone could have washed their hands....or covered their cough.....maybe someone could have stayed home when they felt ill.....maybe then Parklen would be at home, instead of here. 

A procedure later today to take more samples of Parklen's lungs further put him and his breathing in distress.  They had to put a breathing tube in during the procedure because he could no longer breathe on his own.  Because of his fragile state and the extreme flare up in his lungs and airway, they were unable to remove the tube.....at least not now.   


Parklen lays, in a bed.....pumped full of narcotics, with a feeding tube and another to keep him breathing.  His arms are strapped to the bed......he has six separate medications being pumped into his veins.......he is swollen, he is frail.  He is my baby.  This is so close to the EXACT same thing that happened to him four years ago.....so close.  As they wheeled him up from surgery and the room flooded with the critical care team.....as they positioned my limp and lifeless boy with his tubes and his machines......I could not stop the tears.  I could not stop them and each time I tried, I only cried harder.  This scene I was taking in was all too familiar to me.  One that I prayed and hoped and believed I would never see again.  Here I am, here he is.....here we are.

Friday, January 18, 2013

Double Life

I am living a double life.......

Every day I am multiple people all wrapped into one. 

I live a "normal" life.  Loving wife and mother.  Attending wrestling practice, dropping and picking up my son from school.....cooking dinner, cleaning...(just kidding, I dont clean much)
I try and put on my smile, I try and make small talk with people.  I do what I can.

My other life is much darker than the average.  I force smiles to keep from tears.  I hold my youngest boy tightly......I adminester meds, I adjust oxygen...I prepare him for chest treatments, I clean up vomit and wipe tears.  I watch Parklen sleep.....I pray every moment. 
I try to push down the emotions that rise in my throat.  I cry.  I cry a lot.  I think of the future and how much is unknown.  I worry.....I feel guilty about worrying because I know who holds the future. But I worry still.
I struggle with lonliness....telling my best of friends they cannot come over.  This is Parklen's safe place and I would rather be alone that introduce the potential of more sickness.  I get frustrated with trying to explain how he is doing.  I feel like a broken record when I say, "not well."

I feel like a fraud in both of my lives.  The happy life of the every day norm feels wrong because Parklen is so sick.  The sad life of the sickness feels wrong becuase of the other lives being lived under our roof and their need for my attention.

The balance is hard, nearly impossible.  The situation is out of my control.  I can do nothing more than the best I can....... I can hold on, only to the hope, of a better situation.

Parklen and I are heading back to the hopsital in a few days.  He will be there for several days while they try and figure some stuff out.  Truth is, there isnt a cut and dry here.  There isnt a known solution.  There isnt a right and wrong.  There are only maybe's and might be's. 

You would truly think that after so many years of these trips, they would be as natural as breathing.....and in a way, they may just be.  However, they are no easeir today than they were four years, one month and three weeks ago.  My heart aches in the same way, and the tears fall in the same direction as they did then. 

Some days I wonder...."how much longer?"  and the answer doesnt come.  some days I think I have hit my limit....and I am forced to go on.  But, every single day that I breathe I know the truth....  It doesnt matter how long, it doesnt matter.  Life is but a blink of an eye, and its what I choose to do with my every day that counts.  In spite of my situation, regardless of my pain.....I choose to love and I choose to trust God.  When I lay awake at night, and the questions fill my mind, it is this fact alone that brings a sense of peace.  It is this fact that drags my sad and sorrowful self out of bed each morning.  It is this knowledge that sorrow is temperary, and that hardships develop character, that keep my eyes towards him.  It is knowing that none of this situation is permanent no matter how much it may seem to be.

Sunday, January 13, 2013

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Did you see ever Ferris Bueller's Day off back in the 80's?  It was in my top three favorite movies from growing up.  My favorite quote from the film, strangely.......is one that runs through my head almost every day.   "Life moves by pretty fast, if you don't stop and look around every once in a while....you just might miss it."

I have been feeling this way every single day lately....like its just flying by.  I'm trying to look around, every moment, every second........breathe in the beauty of my family.  Suck every drop out my the boys' childhood, pay attention to each moment spent with my husband, and never ever forget what it felt like to be RIGHT here, right now. 







Things aren't easy today, or yesterday.....or for a few weeks now.  Parklen is sick.  Getting worse. And no one knows what to do about it. 

He spends most every single day laying on the couch, wrapped in a blanket, begging for cuddles.  Even as I type these words, I can hear his coughs from down the hall.  They never stop.  He gets treatments for his lungs all day, every day.  They aren't helping.  He is taking close to 20 pills a day, countless inhalers, so much goes into this kid. 

I am scared.  Scared because I have no idea what is going to happen.  Scared because his doctors don't either. 



So.........in spite of this, as I look around each day.....I feel an unexpected and overwhelming sense of gratitude.  Why? I feel thankful because I was chosen to be the mother of these children. I was chosen by God to love and care for the two most special boys in the world.  I am the one who Parklen cries out for in the middle of the night, I am the one that he looks to for comfort.  I get to hold him when nothing else is helping.  I am the one that gets to teach Paysen about compassion for others as he struggles with the difficulties of watching his brother.  I am privileged to take Paysen to wrestling practice and watch him make new friends and find a new place to belong.  I am the woman that wakes each day to the sounds of their little voices.  I get to hear Paysen tell me how thankful he is for his breakfast.....and dinner and picking him up from school....and all the other silly things he says thank you for.

Today as Parklen fell asleep with his head pressed against my belly......the baby began to go wild.  She was kicking up against my belly and bouncing Parklen's sleeping head up and down.  My heart swelled as I thought, no matter how scary things are, no matter how much the unplanned happens, God is blessing me as a mother again.  My blessings are to grow.......in ways I cannot even imagine.

Don't forget what you have.....don't let your sorrows outweigh your blessings.....  Life is so short.