Dog Days Are Over

I wish my state of mind and my physical body mirrored the serenity of this picture. Alas, I cannot say that this is true at this time. Today has been another long day of sad thoughts, random tears, and thoughts of regret brought on by my foraging through hospital papers and Pollyanna-positive bone marrow transplant literature.

Today I found the packet of info I had received on "How To Select A Transplant Center." In this packet there is data on the many transplant centers across the country, collections of statistics that represent people's lives. Would it have made a difference if we had gone to another center?
I clutched that book in my arms and I just cried. I can't help it. I have regrets. I question the decisions we made. We trusted in a system, in a treatment, in a group of doctors, and we did not get the outcome we wanted. I will forever be full of doubt and "what ifs?" I wish I could just serenely accept what has happened, but, I cannot. I do not enjoy the feeling of powerlessness that I feel right now. As parents we are innately wired to protect our children from danger, to help them, to fix them and keep them ALIVE. Our children are not supposed to die before we do. The order of my universe has been irrevocably disordered and with that come ugly emotions like anger, regret and bitterness. I refuse to be content with that or at peace with it or any other cliche the unsuspecting public wants to throw at it. I feel physically ill. Maybe I am really sick.

I want to share something I wrote a while back. I did not date this and I am not sure when I wrote it. I know when I wrote it I was upset about the goings on at the Hop for one reason or another. I was down and angry because Nick wasn't getting the attention I felt he deserved and here is what I wrote.

"The Old Shoe"

When first you appear on their doorstep
There is quite a buzz and a flurry of activity.
"Oh dear, what can the matter be?"

Everyone scurries about making gestures and postulating.
This sense of urgency is somehow appealing.
"Yes! Yes!" you think as you sit in mind numbing shock at the foot of
your son's hospital bed.

They are doing something.
They are going to figure this out.
They know what they are doing.
They will FIX this.

The thrill of the chase spurs them on.
A mystery to be solved.
Finding the key to unlock a cure!

It seems they like you-
but, that does not stop them from their daily rounds,
their unrelenting pursuit of data and
their inability to treat the whole you and not just the parts that
give blood and require scanning.

In the beginning, hope springs eternal.
No one speaks of the "other possibilities."
"FAILURE IS NOT AN OPTION" blasts from the loudspeakers of the compound.
The guards keep weapons at the ready lest you decide to make a hasty exit from
the depravity that surrounds you.

Later...much later.
You become the old shoe.
We've really done everything we know how to do.
You are a testament to our failure.
We can no longer look you in the eye when we speak.

We tortured you beyond the point of no return.
You are now a shell of your former self.
You are damaged goods, beyond repair.
We have no more magic to weave on your behalf.
Unless you make us stop, we will keep on because
we don't know how to let go.

Not so much because we care.
Mainly because we don't know what else to do.
For if we stop there will be silence,
and in the absence of noise
we will have nothing to say that will ease your burden, lighten your heart,
or save you from an untimely demise.
And that my friend would be quite awkward.