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.