Sunday, June 8, 2014

better days to come....

The tests came back yesterday from our trip to Denver a few days ago.
It was confirmed that Parklen is infected with a strain of influenza.


 In fact, he is infected with the very flu that we have lived in fear of for the last 10 months.....it was the one they warned us about before transplant....it was the one that we learned of had and has killed many transplant kids.  Yup.....its that one.

Thankfully enough......they think that he is far enough along after transplant and far enough along in the infection that he is going to be fine.

He feels bad.....but not terrible.  He can still play, and giggle.
He looks rough....but not awful.....


But after all of his results came back it was clear that, as the doctor so eloquently put it, "his immunity sucks."  His counts are much lower than than they need to be to be considered as "recovered."  He is fragile.....this infection makes it more so.
If something else came along in the midst of this flu, it could turn into a really big deal....

On Wednesday, we were given a list of privileges that Parklen could finally partake in.....
the test results changed that.
The privileges taken away.
Were back to where we were.

When I hung up the phone with Parklen's doctor I just felt defeated.
All of the effort put in....
the time spent to protect....
the restrictions....
they had failed.
Because the Henderson form of outdoor adventure comes in the form of potty breaks on the side of the road.


It is a hard thing to understand,
even harder to explain.

Living your life mostly at home.....little freedom to go where you please.
To watch the many social media updates about others and their summer fun.....
To watch your six year old boy as he yearns to play in his back yard.....

We have to be careful.
Vigilant.
We have to keep our guard up high.
We have to continue on the path on which we are traveling.

It has been nearly six years that I have lived this way.....
weary of germs,
fearful of crowds.
Walking the line between safety and fun...

I have always been the one to cancel plans last minute because something came up with Parklen.
I have been the one who people stopped calling......
I have been labeled "overprotective."
I have been labeled a snob.
I have been labeled unreliable.
I have been labeled so many things........

Over time I have just come to accept that I cannot be everything to everyone.
Learned to live with the fact that I am going to let people down.....
That not everyone is going to understand.
and that is harder than I can convey.....

Things aren't normal for us just yet.....
but we have come so far.

Parklen's disease is considered to be in remission.
It is not his disease that he fights now.....
Instead, it is time......we fight with time as we wait for his freshly new cells to multiply.
We are waiting.
That is our fight.
He is fragile because of the transplant.


We may not be moving forward as quickly as we may hope.....
but we will get there.
We will keep fighting as we have been.....


There is something about not being everything to everyone....
I may not be present for many things out in the world....
I may miss out on girls nights and I may not be the first on the list for people to call for help....
but tonight, as I rocked my tiniest baby to sleep....as she stroked my arm with her tiny fingers.....and dug her head deeply into my neck.....I breathed in a sigh of relief....because I know that I am everything to someone.....at least 3 some one's.....

and really....
what else matters?

Here is to better days to come........





2 comments:

  1. Amanda, you are my hero. Your strength and faith are an inspiration to me and many others. I am so sorry for the mean and hurtful things that have been said about and to you. Those people are selfish and small minded but the words are still painful. I can only pray for your family to find the peace and security that many of us take for granted. May god bless and keep you all safe. You have my utmost respect.

    ReplyDelete
  2. great job amanda, keep going...that light at the end of the tunnel. praying it gets closer!

    ReplyDelete