Tuesday, December 20, 2016

Ramblings...

I am pretty much behind....on everything.

Work,
Chores,
To do lists,
life....

I wake up each day with the best of intentions...
and I go to bed each night feeling like Ive failed..

For months now....

Life happens that way sometimes.
We struggle with measuring up...to even our own standards.

Its a trap.

And, although I know that God wants more for my life...I struggle still.

The other day I woke up to a little boy who felt crummy...
Something that's happened probably a thousand times....
over a couple of days, he felt worse.
I woke up on Monday to a grey faced, lethargic Parklen...
I loaded him up and headed to the doctor...
and then to get labs drawn...
and then back home.

Once home, Parklen fell asleep quickly while I paced frantically back and forth, tightly clinching my phone...waiting for his doctor to call.  My mind racing back to years ago...and the panic set in.

Parklen ended up being admitted into our local hospital....
Had our wind not been blowing 88 mph (I'm not even kidding) I would've most likely headed south.
He looked so bad.
He scared his momma.

A minimum of 48 hours inpatient and some meds were ordered...
And so here we sit.

Yesterday was scary....because Parklen looked so much like he did long ago....
His doc and I both thought so...

Last night was hard, because there was little sleep and lots of worrying...

Today was hard,
because we were stuck.

In this room I sat, watching Parklen fall back into his former roll of hospital patient...remembering how to use his call button, maneuver around an IV pole...stare out the window...

I sat today and thought of all the things that I haven't done.
Some important....some less than...
The things around the house,
the plans we had to bake and make...
the cleaning...
the shopping...
The school festivities I was suppose to enjoy with Paysen...

All of it,
left undone.

I began having uneasy feelings days ago when Parklen first started murmuring about not wanting to spend Christmas in Denver...it seemed almost out of nowhere, but I think he knew something was cooking...

Its been almost 8 years exactly...just a couple weeks past..since Parklen first was put into a hospital.
8 years since I first discovered what it meant to have a sick child...
8 years worth of heartache,
8 years worth of worry...
8 years.
You guys....8 years.

I am so weary.

There came a time when I thought this part of our story was closing...the chapter complete...
but the pages must have only been stuck together....because they continue to unfold.  It seems that no matter how hard I try to slam the book closed....it finds its way back into our lives...

Right now as I type out these words, I'm listening to Parklen giggle....he is feeling much better...he still looks a bit puny but so much better.

We're counting on some good blood results tomorrow so that we can head home.
Because Christmas break started officially this evening....and for the love, we need to celebrate.

I'm so thankful for my tribe.
The people who send pizza to the hospital,
text to check in on us,
pick up things from the school,
bring me new leggings,
bring coffee or lunch...
send singing Batmans to Parklen (yes that happened today)
Teachers who bring by gifts,
the many who pray for us....

I'm thankful for a wonderful doctor close by,
for emails and messages from far away.

I'm so thankful.
In spite of my heartache....
I choose to be.

Please continue to remember Parklen in your prayers...because although he's come so far, he continues to struggle...

And please take time to appreciate the little things in life..the school parties, the family time, the Christmas shopping, the every day.....I've said it many times before, but there is someone always wishing for the things you might take for granted....

So when you receive our Christmas card in the mail....most likely after Christmas has passed...just know...that it was so important for the Henderson's to send it....even if it was late.  Because our norm is a little different...but its ours :)
and my gosh....Im TRYING.








Saturday, October 29, 2016

Three years.

Three years.



I spent my morning reading through messages and posts and stories from this day in 2013.
I cannot believe its been three years.
Then again....sometimes it seems like a lifetime ago.

I can remember every ounce of raw emotion that I felt that day. I can remember the way my kids looked.

The way Paysen handled the surgery, the recovery.  The way he looked so small in that hospital gown. His freckles and his teeth as he woke up after the procedure.
I can remember when they wheeled him back onto the floor and the nurses clapped...

I can remember the way Parklen couldn't stop staring at Paysen when we brought him into his room. His frail little body laying next to his hero in bed.
The way he picked at his fingernails like he does when he's nervous.... and just watched his brother.

I remember the way they giggled.

I can see the room where Parklen lived.. The super hero window, the posters covering the walls.
I can remember the doctors filling the room as we anticipated the transplant.
The cooler that held Paysen's marrow being carried by the door and me following to take a picture.....
The doctor leaning against the wall and accidentally pushing the "code" button....
The flood of staff running in shortly after in a mild panic...

I remember one of our favorite nurses...it was her first transplant....
I can see her hooking the marrow up to the pump and smiling as we all stood around watching.
I remember the boys eating pumpkin pie that another favorite nurse from our past had brought to them.

Its all so fresh in my mind.

And next to these memories...tucked nicely into its own place,
lives the hopes I felt that day.
The immense feelings of hope and fear, intertwined together..
The knowledge that this day would forever be a turning point in our lives...

The first two years after Parklen's transplant were crazy.
Many days in the hospital...
Many days lived away from home...
And many many days filled with health.

I remember when they told me Parklen had officially engrafted.
It was my birthday.
It was the best gift I could have been given.
It was that I saw a glimpse into our future..
and it looked so bright...
and for a while it so was..

Today was filled with so much emotion for me. I had so much hope that three years later...things would be so different.  And as much as I wish they were...they aren't what I had hoped.

Parklen and I returned from Denver just 2 days ago... and we leave again in 4...
Life is more mysteries and unanswered questions....

I am so thankful for the day we had 3 years ago.
It was the most significant day in my life.
It showed me depth that I may have never seen otherwise.
I was able to witness first hand a 7 year old hero in action.
I got to watch Parklen receive his gift.
I saw God more than a billion times that day.
That day, enabled us to be here today...
with Parklen.
It gave Parklen a new start...
a year in a classroom,
months worth of running and playing and jumping.
It gave him days without sickness and nights full of rest.
It gave him the ability to be a boy...

I have to believe that those times will return.
I have to.
Because the miracle that is Parklen...
The things he has lived through and the mountains he has climbed...
He has so much left to do...
So many people to tell his story to.

He had a rough start to his day.. a bit of bruising.. and bunch of fatigue and feeling crummy...
but we ended on a good note.
We carved pumpkins and ate chocolate cake...

As I watched him laying on the couch this morning I had many flashbacks from our life before October 29th 2013...My heart hurts in a way that it never has before... but I am choosing to end my day on a good note too...
and instead...
think about the many miracles that have been given to us through this boy's life.
I am going to fall asleep tonight remembering the good.



Thursday, October 13, 2016

Tower

Right now it is after midnight...
The house is mostly quiet,
the background rumble of the clothes in the dryer....
and the crime documentary playing softly across the room from me.
Thats all I can hear...
Everyone asleep...
everyone but me.

I laid down for a few minutes....
but quickly realized sleep was not ready to come.

My mind is overflowing....
So.
Many.
Thoughts.

A lot of the things floating around in my head tonight....and yesterday, and last week....
I refuse to speak out loud.
Many of them...I try to drown out with prayer..... silence them before they take me over....sometimes it works.... but they always come back.
And to be honest....a lot of my prayers end in angry cries.....

One thing seems to stack upon the next....
and the tower grows higher, and higher still....
Until something small, a feather....
taps it ever so slightly....and the pieces fall into my lap...
tear soaked and messy.

Each morning I wipe my lap clean...brush the mess onto the floor as I get up.
Throughout the day, I step over the pile of stress.....One foot over the other....
and by the end of the day the pile has moved its way back into my head.....
Rinse and repeat...
Every.
Day.

Parklen has been wading his way through his days too...
He has ups and downs...
He feels sad, and happy and scared....
He feels good and bad and tired and angry...
He cries...

We've been talking in our quiet moments...
He asks me if I think he is going to die...
I say, "I don't....."
He wakes up at night with nightmares...
He asks me before bed, "What if I don't wake up?"

He lived in much worse health for many years.
He is not nearly as sick as he was before...
Its just simple fact...
He isn't.

But I think that he feels something coming..
And I think that feeling good for quite some time...
has just made how he feels now, scary.

About a year after his transplant, I asked Parklen if he remembered what it was like to be so sick....
He barely could...
Through conversations about surgeries and treatments and hospital scares....Parklen would often say, "I kind of remember that...."
and I counted that as a blessing...
But It seems like him not remembering the terrible portions of his life...have made this time...seem worse than it is.  If only he knew how sick he was before...but I suppose Im thankful he doesn't...and I pray he never gets the chance to re-learn.

I cannot convince him that it is going to be ok.
The only answer that Parklen will accept when it comes to his worries is this;
"I don't know what is going to happen, but God does....and the only thing I can say for sure, is that I will be by your side no matter what....and we will do this together."

And so I pray again....
That God will lift me up...
though I feel so broken...
That he will piece me back together...
and reinforce what once was there....
So that I can be strong for Parklen...
So I can help to give him a life that feels better for him...





Friday, September 16, 2016

Hamster Wheel

 Did you ever have a hamster?

I didn't...but a friend of mine grew up with any and every kind of pet you could imagine... hamster included.  I remember watching the hamster though the glass as it ran on the wheel placed within its enclosure. Running its tiny little heart out to go....nowhere.  If he had stopped running abruptly he would most certainly have fallen. So he just kept on running...on those tiny legs...around and around. Until, one can only assume..he became too tired...and he would begin to slow...slower and slower still...until it was safe to stop...or jump out.



   I am sitting in the hospital room right now....Parklen asleep just feet away. His medication pumping in through his port...with only the sound of his IV pump as my company.  And all I can think about, is that stupid hamster... who by the way, I am pretty sure escaped his cage and ended up dead in the clothes dryer....(irrelevant...)  back to the point....

I feel like I am running on a wheel....around and around.... carrying Parklen with me every day...holding him tight and reassuring him that he's on the road to being better.... but, we just keep running.

Around and around....

The soles of my shoes have worn, the skin on my feet can feel the burn of each impending step, yet...I run.

Around and around....

Waiting until its safe enough to jump off...or stop.

The safety isn't coming.

Parklen has been steadily declining in how he feels since last Christmas....More bad days than good. But we just kept running because, it was right for the season...everyone gets sick in the winter after all....so just keep running...but then came the spring....

He showed his first really concerning bruise 19 weeks ago...
A monster on his arm....
in those 19 weeks, we have spent countless hours in a room just like this one. Parklen hooked up to a drug...waiting for our wheel to slow. Waiting for them to walk in with the lab results that say that Parklen is on the right track.  We have tried 2 separate drugs...the first of which, proved to be fruitless.  The one that currently drips into his body...proving the same.  Because the numbers tell us....we have to keep running.

I don't think that I could possibly count the hours that I spent in this clinic prior to the transplant....it was so so many....5 years worth of so many....  And in the months after the transplant, after we had gone home...I didn't see the walls of these infusion rooms...at all. I had only began to accept the fact that maybe Parklen was better.....fixed....maybe.
The Henderson's worked their way toward a new normal, one that included things like school drop offs and after school clubs... homework, and friends......normal...or almost...

I didn't want to be here again. And I HATE how comfortable it is for us. They all know us, I cannot take a trip down the hall without running into a friend Ive made over the years...The normal from years passed is falling back into place....and I desperately want anything but....

I want to send my kids to school...all of them,
I want to plan my schedule around our family and not around Denver trips....
I want to go to bible study and hang out with friends....
I want Parklen to bust up his knees on the playground...
I want to go back to our somewhat normal existence...
So, badly.

We are going to pretend that all is well for this weekend.... because we are celebrating a certain almost 10 year old as a family....

But,
When we get home on Sunday...I will unpack our things...to wash and repack.  Parklen and I will head back down on Monday and spend a couple of days here.... Parklen will go under again to retrieve more bone marrow for testing....in hopes that a new clue might present itself.... and then, we will go from there.

So for now, we will just keep on running....and hope that our toward nowhere...becomes a toward somewhere.....

Monday, August 8, 2016

Working toward new...

I was walking through the store the other day...
Everywhere I looked there was someone pushing a cart full of school supplies.
Notebooks,
Pencils,
Glue sticks,
Backpacks.....
My eyes darted from cart to cart...and I fought back tears...

Devan walked ahead of me...unaware of my impending breakdown.

Just people...probably mostly parents...
buying supplies...
for school.

No big deal...right?

All I could think about though...
was how I would be shopping for only one boy to return to school this year.
Because, we have all that we need for Parklen to have school here at the house...
Our basement doesn't require special supplies...

I had such high hopes three years ago...when we entered into transplant...
my hopes for a new life for Parklen grew as he smashed through chemo and the receiving of his brother's cells....
When he got to go home much earlier than anticipated...they grew again.
It was a thought always in the back of my head...but each time he flew over a hurdle...I let myself believe a little bit that it was possible for him to leave the life of illness behind.


Over the last couple of months, we've been working on a treatment plan for Parklen as he struggles with these new issues that have come his way. And still... he isn't resolving.

I was sad for him when he couldn't go to Kindergarten and had to stay home for the year....
but I am extra sad now.

I'm sad because, I want him to have the things that are important to him....
friends,
routine,
teachers...

I can close my eyes and see Parklen's face on that first day of first grade.
The excitement he had to be inside of a classroom...
The way that he grinned when he sat in his place.
I can see his face and hear his voice as he told me about his first day.

I haven't actually told Parklen that he won't be starting in a few weeks. I just cannot do it.
He is struggling with some feelings of depression.  He is having more moments of sadness than happy. Spending much time laying around...sleeping....feeling tired....feeling sad. He is emotional about everything.  Much of that can be blamed on his condition or on his medication....but some of it, I believe is just him being over it all.

Parklen and I are here in Denver.
We will go in for appointments tomorrow.
We will start down a new path.....different treatment plan.

We took a camping trip this weekend. It was a decision that rested on how Parklen felt...how his blood test looked.  It was a decision that I wanted to say no to. I wanted to say no because I am so darn tired. But when I looked at the excitement that Parklen had when he heard that his platelets were still high enough for activity....I knew that I had to say yes.

It has become my normal to make my life decisions based on things like that. So, I packed up the car and we headed out.  Id like to say I slept on the way out of town....but I sat wide awake. Next to my husband...and I thought of all things Parklen.

The weekend was a little crazy...
the weather was rough....
The Wyoming wind had its way with our tent...
But, the kids had fun....and that makes any amount of trouble...worth it.


I will just leave this here now...because I don't want to whine......
and ask that you pray for my boy (again) 
pray that this new plan works...
that he recovers...
that he returns to the land of health....



Tuesday, July 12, 2016

Fights on..

I reached across his chest and helped slide the belt into the buckle....
Our eyes met.
Bravely, with an undertone of sadness...he said, "I just don't want to do this stuff anymore."

I smiled and choked down the tears that were threatening to make their appearance..
"I know baby, me neither."

I walked around the backside of the car and climbed into my own seat. Deep breaths helped me to belt myself into place.  I rolled down the window and pasted a smile.

There in the yard was my nine year old. Pressing himself against the fence, his freckled face showing his feelings.  The whites of his eyes turning quickly red. His forced smile, a lot like mine...beginning to fade. "Bye mommy, I love you."

I look further and see my baby. She sits in the arms of my mom...on the porch that leads to my home. She waves her chubby fingers at me and screams about how much she will miss me. Her eyes also filled with tears. Earlier that morning she had whispered, "I will miss you mommy, but just look for me in the stars." I wonder when she began to grow up so quickly....and I shiver at the thought of all that Ive missed.  With her....with her brother..  The moments that have been stolen by their brother's illness....

I wave and smile as I begin to drive away.
I begin to remember....
The first time,
the second time....
the 50th time...
that I have had to leave someone behind to head south.

I remember the tiny face of my little boy who was only 2 the first time I left him behind. His tiny voice on the other end of the telephone....
I remember the tears that he shed then...
and now his sister....
her face, her tears...
They haunt me.

The boy in the rearview mirror....he haunts me too.
The site of his face, when its filled with worry and fear...
The tears that he sheds in silence as we drive down the road....
Those visions keep me up at night.

Most things in my life are out of my control.

Most things come my way whether I welcome them or not.

We left the apartment building first thing this morning...Parklen walking beside me...refusing to hold my hand... busy picking the already too short nails on the end of his fingers.

He walks quietly... looking at the ground.

Once we get to the hospital...he begins to remind me of how hungry he is. His procedure requires him to not eat....

We settle into his infusion room...
The normal tweaks,
Adjusting his bed just the way he likes it,
Finding his favorite channel on the t.v.
Vital signs taken...
The revealing of his nurse for the day...
The inserting of the needle into his port...
The pre-meds pumped into his body...
The waiting game for pharmacy to send up the med (somehow its always a surprise that we're there)
And then the infusion begins...

Parklen refuses to speak to me.
He wants to look anywhere besides in my direction.
I am the one who has driven him to this place...so he blames me...
I accept this for him...
Its easy to let him blame me, I am his constant...and I will do whatever I can to make his life a bit better....
He makes small talk with his nurse but nothing more than one word replies...
As the medicine pumps through his veins, he continues to ignore my presence....
He half heartedly participates in some physical therapy and manages to dislodge his needle....causing an infiltration of his medication into places it wasn't meant to be...instant swelling..stopping of the meds....
Needle taken out,
new needle placed in....
medicine started again....
3 hours have now passed....as the doctor walks into the room to speak to me....
We talk about the puzzles...the known, the unknown...
no matter what he says, I feel the same. The same as I have felt many times before...
The feeling of the other shoe ready to drop....
They come to collect him for his procedure...

Parklen walks down the hall... next to me, and next to his IV pole.  He pulls more skin from his fingers as he looks to the floor...step by step....he walks quickly, nerves.

We walk into the room and introductions take place...
I help him onto the table....something I have done dozens of times...
He shivers and they wrap him with a warm blanket..
I help him to lay down as they show him whats going on around him...
"Can I please see the needle?"
and the doc looks straight to me...."show him."
If there is anything I know about Parklen and hospitals...he doesn't like secrets or surprises...he desires to be in the know...and as scary as it is...he would rather face it head on that be kept in the dark.
They pull a needle from the cabinet and hand it over for him to see.
He studies in through the packaging as the doctor explains which part will be inserted into the back of his hip...his face unsure as he says, "ok."
I ask him if he'd like to hold my hand, "no."
I watch, he watches, as they begin to push the medicine into the tubing....seconds is how long it takes for him to drift away... I lean in to kiss his lips and then walk out of the room.
I tried before, to count the times Ive watched Parklen be put under anesthesia....I lost count...I know that its more than 45 and most likely more than 50... little procedures, big ones.... long surgeries and quick ones...

I walked down the hall back to his room and waited.
Visited with the doc some more....
They bring him into the room still asleep...
He sleeps soundly for over an hour. (if you wake him up...its not pretty...for anyone)

I lean over and gently whisper..."Parklen, its time to wake up."
His eyes flutter a bit as he considers whether he's ready to pry his lids open.
A few minutes pass.
Again, "Parky, its time to get up."
I set a juice on the table in front of him...enticing the thirst and hunger within him.
He stirs.
I help him to sit up and watch as he drinks.
He has told me before that there is nothing that tastes as good as juice after surgery..after the hours (sometimes days) he has gone without a drink...
He eats and he drinks.
and then,
He asks me to come and lay with him...
I oblige...
and he snuggles in.
He doesn't quite fit the way that he did years ago...when we would sit in the same room for hours at a time...  He looks over and leans in to kiss his momma.
I begin to breathe easier.

We spent the afternoon and evening together...in the hospital and out. We ate dinner together, we laughed together....
He told me that he's very sore where they took their samples...
But, he has been in the best spirits that Ive seen in a while.

Parky fights on...for how long he must, we do not know.
We will wait for these results and see if anything changes...
Parky fights on.....


Monday, June 6, 2016

Mostly...






It was a few weeks ago,
The kids were tucked nicely into their beds and I plopped down on the couch next to Devan.

I pulled out my computer and my planner...
and began to mark down the to do's for the summer...
The boys baseball games, weddings to photograph, appointments to attend, summer school, piano practises.....
Our usual summer wish list of things we hope to do.


The schedule quickly started to fill up.   As I glanced over the first page I noticed that many of the boys games were on the same nights...at the same times... I sighed loudly as I looked over to Devan, "How am I going to manage all of this by myself? How will I be able to see them both play?"   I was seriously stressed out about it. I tend to do this... find something.... obsess over it....  

It was the first year that Parklen would be playing a sport. He had chosen baseball...which was delightful to me, because it just happens to be my favorite. He was super adorable walking through the store choosing his gear....a smile from ear to ear.... giggles over pants and gloves....

Parklen was able to attend one baseball practise before it all changed. 

See, these are the things that the average parent gets to worry about..... 
How can I juggle these sports schedules...
What time is practise....
Who goes where......

Ive had a little taste of the norm....small...
Parklen went to school.....although he missed many days....
Parklen made friends,
Parklen learned....
Parklen was able to take piano lessons.....


I spent many mornings dropping two boys at school....and afternoons picking them up.
I attended a field trip....
I packed Parklen lunches....
I let go of him a little bit....
I was able to watch brothers walk together onto the playground....

There has been a difficulty for me since the transplant....
an inability to let go.

Let go of the worry.....
Let go of the fear...
To let go of the life we had lived....

I have known for quite some time that something was going on with my little guy....
Though, the tests did not reveal a problem for many months (Deja vu) 
There was a time, years ago, in which I spent many nights laying awake and wondering if I was imagining Parklen's sickness....since the tests never showed what my eyes saw.... I could not count, the nights I spent like that....even if I tried. 
I would talk to God, talk to myself.....wondering repeatedly why it was only I who saw... I have been able to predict each time he has fallen ill....I can see the changes as they begin each and every time... Like an injured knee predicting a storm...I can feel it. 
I can say, "There will be rain...." 

Last month....the tests caught up with my worries a bit...
We had just left for a surprise road trip when I noticed the first bruise...
I shoved down the lump in my throat...determined to enjoy our family trip ...  

A few nights before we loaded up to go I lay silently in bed...I could feel the tears rolling down my face and I waded through the many apprehensions I felt about taking a trip..  The things I had noticed about Parklen made me nervous to take him across the country...I played a serious game of tug of war with myself...to stay home, to go.....

At a certain point I heard an almost audible whisper....."Go" 
I wiped the tears and decided that Parklen needed the trip...that we all did. 
Devan was set to leave for his final internship and knowing that our time together would be scarce this summer made the trip that much more important. 

As the bruise on Parklen's arm began to grow throughout the day...I felt scared. When he woke up with more bruises the next day....I felt worse.  He felt ok, just a little tired... and by the time that the bruise had taken over his arm we were already on our way home.  

Once home, a blood test revealed that his platelets were low. Something we have dealt with before...but not in quite some time.  A few days later we went to Denver and they took some bone marrow for testing.... 

The next day, a tired Parklen...a cranky Phin and I headed back to the hospital to go over the results. 
A new condition.
Another diagnosis.
Idiopathic Thrombocytopenia Purpura
Big deal....or not....With Parklen, you can never say...
Because he has his own set of rules....his own standards...

I have been reflecting on the night in which I thought that an overlapping schedule was my biggest worry.... thinking about how I am now going to be driving to Denver once a week for a while....and twice a month after that... thinking about how I missed 3 of Paysen's games in just the last 2 weeks...
and how there won't be any double bookings in the way of baseball this summer...because once again, Parklen will be seated on the bleachers...

I've been thinking about how Parklen woke me up in the middle of the night crying...saying he was afraid to die... thinking about how he rarely talked about it before...when he was much closer to it... how he said, "I don't want another disease...why do I always have to have a disease?"





Ive been thinking about how Paysen feels with a new road block in our lives...
Thinking about how his sadness over his brother shows up in different ways...

Ive been obsessing over Parklen's face when I told him that he couldn't play baseball...and that we would have to wait to even go camping....

Parklen is a mess.
His medicine makes him unable to control his emotions...he is irrational and weepy..he is angry and sad....
He says he feels mostly bad and very tired...

He's having trouble sleeping through the night....

It all seems to be harder on him....and on me.
When Parklen was sick before...he knew nothing else. He had always been sick. He didn't have healthy memories to compare his sick days with... The sum of his days...were sick.
It wasn't until after the transplant that he got to live like a little boy... He got to make memories that were stitched together with the thread of health. 
He was able to discover what feeling good was all about.

And now, when he feels bad...and when he has to miss out on things...and spend hours in a hospital room hooked up to medicines....he has those memories to compare his time with....

As if knowing what good feels like....makes bad that much worse... 

When Parklen was sick before....I did what I needed...
It was my norm.
Every day was about keeping him alive...about being his spokesperson...
It was what it was...
I knew nothing else..
and the months without an emergency that happened after his transplant....they changed my norm...and I am struggling so much more now...than I did then.

It is so hard to explain...
So difficult to convey...

Pray for Parky.. 
and never stop...
because although the battle of his transplant has somewhat fizzled out...the war has not been won. He needs you to remember him... He needs the prayer. 

And while you're at it...wont you pray for me too?!?!


I too...feel mostly bad and very tired.



Wednesday, May 4, 2016

{3}



There is very little that is quite the same.....as mothering a daughter...
Three years have flown by in the blink of an eye.
My little pixie...
convinced that she can do anything...
and I will never convince her otherwise...

She is funny,
She is smart,
Clever,
and sweet.

She loves to tell stories of make believe....
She is best friends with an imaginary Dinosaur named Gracie..(I couldn't make this up)
She prefers to play by herself or with her "Parks" (Parklen) instead of with kids her own age....
She spends hours a day making pretend pancakes in her tiny kitchen.
She loves to mother her baby dolls...
Sing,
Dance....

She can melt your heart with her tiny voice.
"Dance with me mom"
Spinning circles in the living room....

She holds her daddy's heart.
The key to her brother's insanity....

She offers my greatest challenges each day, and my sweetest rewards at night when I tuck her in (who am I kidding...she never sleeps) as she asks me for one more hug..... or just another kiss....

She loves hugs and kisses and songs and stories....



Phin turned 3 last week..I was so incredibly filled with emotions on that day...
Maybe because she is my baby...
maybe because time is ticking by more quickly every day...
I managed to forget to record anything....
I felt like I was barely even there...as the people sang and the presents were unwrapped...
It was over in a flash....

There is always a cloud of stress that looms above me... following my steps and keeping time with my rhythm.  It sprinkles down droplets....remembrance of days gone by.  The cloud refuses to let me forget.

But.

If I am not careful...that cloud has the ability to steal my joy. To lose focus on the day before me as I fight to swim away from yesterday...

Thanking God for three years with our lovely daughter....three years with the most amazing surprise one could receive... and unexpected child... she completes our family in ways we could have never imagined. She brings forth new life each day...she came into our world at the perfect time. She shed light on our hardest days...and continues to brighten our lives....

Here is to another year of life with you....

Phinlynn.

We love you.


















Monday, April 25, 2016

been a day...







"It has been a day......"
I thought to myself as I slumped down into the couch...
The kids finally tucked into their beds,
and the first moment of silence for the day rang calmly in my ears....

The moment of peace quickly faded as the list of worries quickly found their place at the forefront of my mind.... constant. Ever present....

It has been more than a day.....


There is an elephant that smiles down at me as he perches himself upon my chest....as if to say,
"Yes, I'm still here..."
Although, I already know this to be true...because the weight .....oh the weight...is hard to bear...
Each breath feels heavy and hard to grasp....

and why?!?!

Not one reason....but many.
The worry resides...

The ever present companion....
The unknown...

I yearn for a breath so deep...
for the weight to be lifted.

and Yet,
I struggle.

Too much swimming through the rivers of my mind to convey...
too deep of waters to wade...

I pray for relief...
and I know...
He hears...
but for now, He is quiet...

When you think of it....wont you pray for me? For us? For the breath....for the weight to be lifted.
We know...I know that the goodness of God will overcome...even in dark days...

It seems that in the midst of struggle...life carries on... Phin just turned 3, are you kidding me? Parklen is currently preparing to turn EIGHT...that cannot be possible...  Devan is working on the biggest project of his graduate school career...he presents this week.... Paysen...growing, in height and character....

And so... I carry on.....




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....