Monday, March 24, 2014

Rhythm

There are moments in life when I just say to myself......."What in the heck is wrong with you?"  I have been having so many of those moments here lately that I am embarrassed to admit it.....

Moments where I am staring at my newly chubby five year old boy and thinking about how thankful I am to have him next to me.....but struggling to smile anyway.

Moments that are filled with so much guilt and loneliness......and all out despair......
moments of feeling as though there is not one other person in this entire world who could understand......

The guilt is the hardest.......
because I should be happy.....
and I am......
but not all the time......

I remember that Joy is always inside of me no matter how I feel.....
That truth and love of God keep me grounded in security.....but I am still human. and humans have to deal with feelings.....

I cannot keep my footing at the mountain top every second of every day.
although I do try......
the valley's find me.

I do find happiness in the small things that others may pass by unnoticed....
the things that Parklen does on his own....the things he couldn't do before.....
I smile when he throws a fit because it is the strongest fit I have ever seen each and every time......
I smile when he gets mad at me or anyone because he has the strength to stomp away.....

but the guilt comes.....

The guilt about the times when I am not smiling....
the times when I feel so sad.

The sadness is so hard to explain,
and I am certain that, unless you have experienced something similar than you may not understand......

Sadness.....
Sometimes you don't have a real reason.....
It comes just because.....

because you are stuck....
because you tired....
because you just cannot find your rhythm...........not quite yet anyway.

I do not enjoy being stuck.
I do not enjoy being anything less than my best.
I find comfort in the little things for now,
holding onto each one and piling them all up inside of me as I wait to get these bigger things under my grasp.

Rhythm........

I thought I was so alone until I received a comment on my last blog from another parent.......
a bmt parent.
One that I have never met.
Home for a year now and just now finding their own rhythm....
Coming to the other side of the struggles that are right now staring me in the face.....

I have always been honest about the struggles of our family.....
and although the feelings I have now are not as you would imagine....
I don't want to hide them.

I am facing uncharted waters....
this is a place of where I have never been.....
and of course, when people say... "I bet you are so glad to be home..."
I am.
but the answer to that question is so much deeper than, "yes"

I'm glad to be home because my baby is still alive....
he is thriving.
I am glad to be home because my entire family sleeps under one roof.....
I am glad to be home because I have my space.....

but the pressures are so great.

I am terrified at the weight of responsibility that rests snugly on my shoulders.....
I am exhausted by the duties that come with keeping my glass egg safe....
intimidated by the new requirements.....

and I am completely broken by the fact that people think that I have this all figured out.
because I don't.
Every single day has presented me with a challenge that is bigger than I had faced the day before.

I often feel my stomach churn at the things that people say to me.....
I have to believe that they don't know how hurtful their words are.
I have to believe that people just don't know what to say.....and say something that they think sounds ok..... but the words have hurt me many times.
There are so many examples....but I will keep those to myself.....

Let me just offer this advice, if what you are about to say to someone in any situation that has affected their child's health and well being begins with the words ,"It must be nice....." don't say it.  Just stop yourself.....
If you are about to say to that person anything that belittles what they are going through....if you are about to voice any words that downplay their experience....just stop.  If you think that offering advice on things that you have never experienced is the way to go.....stop.  Don't try to find a comparison...I mean it.  Don't ever say, "I know how you feel."  Don't ever tell them how they should feel....  Trust me when I say, there is nothing that can compare to having an ill child....There is nothing that can feel the same as walking that journey, and it is different for everyone.

The best thing that you can say.....the most meaningful things to hear is, "you aren't alone."  "Im here for you."  "What can I do?"   but be prepared, because sometimes that person may not know what they need help with...sometimes you don't know what you should ask for.....  but the most important thing is this.  Follow through.  Be what you say you will be.  Actions are so much more important than words. Being a friend, a support.... doesn't always mean understanding.....it means caring for someone enough to help them even if you can't understand how they feel.....even if the feelings they have seem silly to you.

Our story didn't end.....
The transplant didn't set our life into pilot mode for the duration of this flight......

The transplant began a rebuilding of Parklen's body....his life.
It was the beginning......not the end.
Each day the cells inside of him are working to find their own rhythm....working to learn this new body of which they now live.
His immunity is still compromised.....

At the beginning of the weekend......we stepped out.
He had been stuck completely inside of the house for days,
hadn't felt the sunlight on his face for quite some time......
He asked to go for a walk.....
It took almost 15 minutes to get him bundled up, masked and protected.....
we were outside for maybe half of that......
but it was worth every moment.
Watching him walk down the street, even if it didn't last.....even if he wanted to get back home quickly.....it was worth it.
It would have been so easy to let him just run out for a moment.....like his brother.
So easy to say "okay, just this once......"

but.
I know, and I fear that the moment I let my guard down will be the moment that something lurking outside will find its way into his body....

So, I stick to these painful rules.....
I cling to the fact that my craziness has kept him safe during this journey.....
my choice to follow a list of completely insane and often hard rules has brought Parklen and our family to where we are today.......home.

I will get it.....
I keep telling myself that it can't be this hard forever.....

Things will come.
and one day I will wake up and be perfectly nestled into my own rhythm.....
I will look back on today and be thankful for this struggle and all that I learned from it.



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