I have been thinking about food, and insatiable appetites and how my son is plagued every single moment of every single day with the uncontrollable thought of food.
I have been thinking about what Nicholas will look like when he is finally free from this overwhelming obsession.
Who will he be once this demon of a disease is exorcised from his body and mind?
All of this thinking has made me realize that.....in the twelve years I have been raising my son,
and the battles we have fought to keep him away from food
and the distractions we have created to keep his mind focused on the world around him....
Without this life-threatening obsession with food.......
I do not know who my son is....
I do not know the boy beneath.
I am anxious to see him.
And if this drug trial falls short of reaching this goal,
Still I believe.
We are getting close
and for the first time in a very long while........
I have hope.
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.