Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Monday, October 13, 2014

The Boy Beneath

I have been thinking a lot about the upcoming drug trial for Nicholas.

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.


“Hope” is the thing with feathers -
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.

-Emily Dickinson