Sunday, October 20, 2013

what its not.....


Let this little image melt your heart as it did mine!!  If there is anyone that baby Phinlynn loves to spend time with...it is her biggest brother Paysen....these two have a sweet bond....Buds for sure!!

Things have been crazy for these two kids....the ones who are healthy.......


There is a lunch at the hospital for parents of the hematology and oncology patients.....
It is a chance to get together and meet other parents and to feel some support from people in like situations.

I have avoided this lunch for almost five years........
To really understand the reasons, you would have to cruise around in my shoes for a bit.....

Everyone knows about cancer....
We all know that we need a cure....
We all know that the nasty disease kills far too many people.....
It is a terrible sickness....
People know that.

What do you know about blood diseases? 
What kind of things do we know about Hematology?

The majority of the parents on the floor are the parents of kids with cancer.......

This past week I decided to venture into the support lunch.....

It took just a few minutes for my fears to be realized....
There were two other parents in the room.
The mother of a little boy and the father of a little girl.....
The mother began to ask questions..about our children....
"What kind of cancer does your son have?"
"He actually has an autoimmune disease...."
"Oh...."
And that's all it took....
The two of them did not look at me once more, did not ask me another question....just began to talk to one another about cancer and their children.
Because afterall....my son just has an autoimmune disease....its not cancer.

I sat there, brave faced....holding in the tears....
I listened as they spoke about the few weeks they had been living with the horror of an ill child....
I will never down play their words....one moment with a sick baby is one too many....
There is no better story of a child with an illness....
there is, however....more than one awful disease.....

We have experienced the cancer bias many times over....
Parklen doesn't qualify for many of the charities for children because he doesn't have cancer....we have had his providers at the hospital call many organizations and explain how horrible his sickness is and their answer has always remained the same...."no"

I have had nurses at the hospital tell me that Parklen would have a better consistency of nursing care if he were "one of the oncology patients."

I have heard people say, "Oh yeah...you guys are just hematology."

I don't know if there is something that actually can compare to the feeling you get when people act as though your child is not important enough to get their attention.....as if his pain would mean more if it had a name like cancer....

During the agonizing minutes I spent in the parent lunch it took every ounce of my strength to not scream...."He is dying....he is too sick to fight any longer....he has been fighting this fight since he was an infant.....it has been five years......there is no other kid like him......we are moving forward on a hope and a prayer because no one knows if this transplant will work.."
It wasn't supportive for me.....it was painful.

I left the lunch feeling bitter and sad....
If only people could understand....

When Parklen beats this....
When Parklen comes out on the other side.....
When my days are filled with "normal"
I will make it my goal to educate....
to show people everywhere the awfulness that it is to have a blood disease....
I will make a difference.....
I will be the voice of the many that have no support....
The ones who sit apart at the "support lunches"
The parents who cry alone and know that to find someone else who understands their pain is no easy task..........

I can say....my son does not have cancer...
I can also say, my son does not have much of a childhood....
I can say, my son does not know what it feels like to be healthy....
My son's every day life has been a struggle....for as long as he can remember....

Thank God for doctors who make a choice to work in such an unknown field....the ones who understand the pain of the rare diseases....the ones who often go with out regognition...who dont get as much funding for research and care.....

We had a nice time with the family this weekend....
It was over far too quickly,
but we all smile as we think of the many small moments that we were able to cram into this short time....Quality....maybe not quanity....but we are blessed either way.


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