Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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.

Saturday, January 3, 2015

The Abyss

photo: 1zoom.net
Beware that when fighting monsters,
you yourself do not become a monster,
 for when you gaze long into the abyss,
the abyss gazes also into you.

Most days I am able to ignore the beast.

The activity of daily life keeps my mind focused on other things.

Once a year, however,

I am forced to look directly into the eyes of this horrific creature,

the terrifying face of a child's disease.

And I am humbled.

and frightened.

This Friday, Nicholas and I will travel into Boston for an overnight stay at Children's Hospital. Here they will perform an overnight EEG to measure the amount of subclinical seizure activity that occurs inside Nick's brain.

For a parent, enduring this procedure, is what I imagine it is like to endure Hell.

It is frightening on so many levels.

It forces me to look directly into the eyes of the beast.

I see him and he sees me.

I see a physical manifestation of the damage he inflicts on my son. The power he has to whisper into Nick's brain.

Here on the 9th floor, I am reminded of the ultimate power he has to take the life of a child.

Several of our visits have included "code blue" episodes where doctors, nurses and emergency personnel are summoned via loud speaker and run through the hospital hallways to the room of a child who has coded.

I am humbled beyond imagine and reminded of how fortunate we are to be spared such a fate.

I am reminded of my son's bravery and resilience.

Unlike me, he looks forward to these visits where he can:

Visit the "Krusty Krab"
(the closet next to his bed)

and enjoy an ice cream treat
He sleeps soundly
I do not.
Nicholas has affectionately named this procedure as "getting his buttons." He enjoys these yearly visits with the warm and caring staff of the Neurology Department of Boston's Children's Hospital. He chit chats happily with doctors, nurses and room service staff. He has been appropriately dubbed, the Mayor, by many of the now familiar staff.

For Nicholas, it is a joyful experience.

Try as I may to adopt his sage-like and healthy philosophy, I have been unsuccessful. No amount of meditation, long discussions or deep breathing seems to help. I experience an emotional fall-out the week before and the week after the procedure. I become a monster.

I adopt a brave outward demeanor, but inside I am afraid.

I do not enjoy being this close to the beast.

photo: Shadow of the Beast, NURO-Art, deviantart.com
As a parent of a child diagnosed with a life threatening illness,
it is a battle I must endure,
a Hell I will tolerate,
to ensure a healthy life for my child.
There are moments
when even to the sober eye of Reason,
the world of our sad Humanity
may assume the semblance of Hell. 
-Edgar Allen Poe

No comments:

Post a Comment