Friday, July 27, 2012

Tennis!


Well hello there......Been awhile eh?  Life has been keeping me busy, as it tends to do.  Some pretty exciting things happening for little Parklen that I would like to share......

  A group of wonderful people are putting on a charity tennis tournament for the little dude!!! Awesome right?  Yes!!! 

What's that you say? You don't know how to play tennis?  Well, me neither....really.  Unless, of course, you count Devan and I trying to hit each other with the balls in what we like to call, "Combat Tennis."  Fun stuff there. 

There is going to be a beginners bracket...which we will play in and I hope, if you can, you will join us.  You can find the information about the festivities here. Annnnd, even if you decide not to play, there will be a lot of fun stuff going on!! 

We are really excited about all of the support and help!! It is easing the "Going to Maryland" stress quite a bit! 

What have all of you been doing?  Hello.........Summer is almost over.  That is CRAZY.  I can actually feel a panic attack coming on.....Holy Kindergarten!?!?!?!  Just around the corner. 

Thursday, July 12, 2012

One day at a time.....


This is how Parklen rolled around the floor today.....riding along on his IV pole.



Yesterday when we came to the hospital, and they accessed Parklen's port......he didn't want me to hold him......because, "he's not a baby."  So I didn't.....  I could see him smiling behind his mask.... He did it, he isn't a baby. 

I have dreaded this trip since our last one.  My spirits aren't high.  Three years and eight months of hospital's are getting to me.  Its something that I am used to, but I wish every day that I wasn't.

This month the plan is different than it was last.  Its hard to try and explain to everyone who asks........

They are changing his daily meds to a much stronger drug....one they have tried before but not this high of a dose......hoping that he will respond better to it.  They are considering another round of scopes and tests next month.  And I have been reminded once again, to "think about the transplant."

His main doctor.....has decided after a couple weeks of thinking, that we should go to Maryland.  The specialist there at the research hospital doesn't have any great ideas.....but he wants to see him so that when they discuss him long distance he will have a better idea of what he is like. 
Can I tell you that a million anxieties arise in my gut when I think about making a trip across the country.......a MILLION.    But, as Devan reminds me, we will take it one day at a time.


Monday, July 9, 2012

Where I stand.......


Here's where I stand.......
I stand afraid,
of the future.....
afraid of the now.
I stand hurt,
I stand weak......
I stand confused and puzzled.

I stand in the face of perfect strangers......
Ones that send me thoughts and prayers and words of my strength,.,,,,
I stand wanting to scream at the top of my lungs....
"I am not strong..." 
For, if for one single moment, I forget about God, take my eyes off of him.....
I am crumbled on the floor,
a weak and hopeless woman.

I do what I must,
and truthfully, some days I don't know how.
I struggle,
I tire.

I know for certain........
I could not maintain.........
with no faith.

and I fail to understand how anyone could..........

I am thankful to God,
that on days like this....
Days before I head to the hospital....
and I feel overwhelmed,
and angry.....
He loves me.

I am thankful that when its hard to see the sunlight......
I can look to my past and remember the good that has been brought to me through my heartache....

I am thankful that when I feel so lonely.....
I am never truly alone.

So....where do I stand?
today.....I don't....
I sit......
I sit and stare at my suitcase......
dreading the monthly pack......
feeling sorry for myself, my baby, and my family.

TOMORROW......
I will pull myself up,
but for today......
I am content where I sit.......

Friday, July 6, 2012

whats up....

I feel like I have been really absent from my blog lately.  Not on purpose.....really, or maybe it is.  Life has been more of the same lately.  Sometimes I feel like I have nothing new to write about.  Its just things...repeating themselves...over and over. 

So, I think that maybe people don't want to read my same thoughts....about my troubles....Then someone asks me, "why haven't you been blogging?" So I will.

We are heading down to Denver this coming week.  Me and the boys.  Parklen is getting three more days of treatments and we will talk about what they have come up with as far as the future goes. 

Thanks to his awesome medicine,,(have I mentioned my hatred for Prednisone?) Parklen isn't sleeping well.....at all.  Some nights its just restlessness, some....he is completely, crazy wide awake....Sometimes he wakes me up screaming..... its different each night.... but one thing remains the same, he and I are not sleeping. 

The no sleep thing really sets the tone for our days...I am so slow in the morning...slow to rise and slow to really wake up. I feel like I am dragging for at least a couple of hours after getting out of bed, and the kids notice....well not Parklen, he sleeps in.   I am so concerned for this coming school year.....praying Paysen wont be the "late kid." 

I used to be the wife that got up and made her hubby breakfast almost every day.....I haven't seen that lady in a while.  Honestly, a couple hours before he leaves for school is the time I really start sleeping and I don't even hear him go most mornings.  I tried compensating by making a huge batch of breakfast burritos and freezing them for him....which reminds me, he ate them all..like a week ago.....

This brings me to another huge thing going on right now....Devan is in graduate school.  Have you ever been married to someone in graduate school?  Its something....that's for sure.  He spends most of his time at school....I really mean "most."  If he isn't at school he is tucked away in the room, hunched over his desk.....The boys and I have been missing him like crazy.  When I look down the three and a half year road we have till the end....I feel overwhelmed.  When I focus on today instead, I am beaming with pride.  I am so proud of him, for the courage it took to start over, for the dedication he shows each and every day.....For stepping out of his comfort zone....for working hard for our future.  We have decided this is the path for our family,.....so we do what we must to make it work.  We miss each other....but make the most of the time we are together.  I try to help him study...but really, I know nothing about anatomy.....I am good at reading flash cards though..(not really, those are some hard words to pronounce....haha.)  This first semester is just the beginning of many....God willing, we will get through this.

The school thing is hard on Paysen....he really misses his dad.  He's good though, as long as he gets his wrestling time in.,.......



We had a good little break from reality on the fourth....a few hours of relaxation....with some friends.
Tucked away in our favorite hidden spot on the mountain....not doing much.  and it was what we needed. Sometimes.....a group of silly, carefree people is just what the doctor ordered.



Lets leave this little post at that......stay away from the really mushy, feeling type stuff.....for tonight