Monday, March 17, 2014

hang on....

Sometimes in life you just don't have things figured out.....
even when  you are completely certain that you should.


By now I should be used to being home.
I should have mastered the daily routine of life at this point....

However,
I am not....
I have not.

I cannot seem to remember what average means.
What having normal life feels like.
How to be a mother....
at home.....

Getting up in the morning is hard in and of itself.....
knowing that the list of things that need to be done is long....
and that the number of which will be checked off.....is small.

We are contained with in our home most every moment of our day....Parklen, Phinlynn and myself.  Inside.

Parklen spent much of spring break this past week watching Paysen play outside through the window.....all of us knowing how badly he would love to join him, but how capable he is of comprehending the dangers.....

His knowledge of medical things,
terms,
scenarios,
consequences....
far surpasses most five year olds....even most adults.
His ability to grasp how fragile he is even when he feels better than he ever has....is amazing.

He would love to go to school.....
play with friends.
they fell asleep before bed time....and right next to their best friend....

He woke up this morning (crazy late, after a long night) and his eyes filled with tears as he realized that his brother was gone.
His playmate, here no more.....
spring break over.
Back at school.

We didn't do anything overly exciting over the break,
there was a Denver checkup....
a ton of Lego building....
and home projects galore.....

We would have loved to travel....
or see a movie,
even go to eat......
Those things will come.....in time.
But for now our vacations are with in our home......

The boys spent so much time together....
and there were times I thought that they would kill each other....
I could see the delight in Paysen's eyes as Parklen would chase him screaming and ready to wrestle.
How long has he waited?
How long has he wished for a brother that could play?

He wrote a letter the week before break while at school.
He explained to me that he started to think about how Parklen couldn't go to school.....how he must be so sad to be home all the time....he told me that he started to cry.
The letter made me cry.......
It was personal,
thoughtful...
and sweet.

As I watched them play I knew that things were falling into place....
that the time lost between the two will never compare to the memories that are to come.

I find myself struggling between the knowledge of things that need to be done.....for Parklen's safety and for my sanity....with the knowledge of how badly Parklen needs a playmate, and I am the only one around.  Trying to STILL unpack from the apartment.....and the move before we left....  Trying to fall into the groove that I know must be waiting for me.  The place where I will remember things....like to send my first grader to school in something green on Saint Patricks Day.....
Things like planning for dinner before its almost too late to eat.....schedules....chores....

I have been trying to distract myself with different things....late at night when the kids are in bed and I should be scraping away at my to do list.....instead I am trying to release some stress by doing projects.  Making jewelry, painting signs, sewing.....eating.

My favorite project of recent days was a newborn photo shoot I did over the weekend.  It has been so long since I photographed a child other than my own.  So many months since I have even thought about it. and it felt so good.


This blog is a random concoction of randomness.....nothing too specific to say, but lots of things to ramble.

It has been 140 days since Parklen's transplant.  140.  The time has gone faster than I could have ever imagined it would.....however, at the same time........it feels as though the last year has been closer to five....

Health is something that is so often taken for granted.....by us all.
When I look at Parklen I know that is not the case with him....
He is living and he is loving that.
He is learning how to find himself.....deciding who it is that he wants to be and all that he is capable of .

Can you even imagine all of the things that he will accomplish?
The places he will go?
The people who his life will change....

Sometimes you just don't have it together....
I do not have it together.
I don't know exactly how to get there either....
I know that things are not easier, as many think they should be.
I know that the pressure on me as Parklen's mother....as his caregiver are pushing harder than ever.....
I know that by the grace of God I will get to where I need to be.
I know that only time can carry me wherever I am meant to fall....

I will get it together.....
but for today,
I am just hanging on....
trying to do my best,
trying to smile with thoughts of how much further we are....
give thanks for where we are instead of where we could be.....
I just have to hang on.....







2 comments:

  1. You don't know me but we have something in common. Sick kids and a lengthy stay at Brent's Place. I just wanted to say to you that I have been home from the Brent's apartment experience for 1 year and I am JUST now getting back into the normal groove...and I don't have a baby to deal with, although I do have another child who we needed to keep life "normal" for during the crazy medical world that we were/are. So, I am just writing this to say to you....be gentle on yourself. Don't expect too much. it will come but it will take way way longer than you think or would like...but just let that go, let all those expectations of what you SHOULD be doing go. No one understands and when people ask if you are happy to be home your know in your heart that you are so happy...but it is HARD, really really hard and no one can understand that fully. So, again, be kind and gentle and forgiving of yourself. You are doing an outstanding job.

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  2. parky is doing so well!!!! When he gets healthy i cant wait to play with him!!! <3 BY MADDY CONNER

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