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.




Saturday, January 18, 2014

The Most Beautifully Painful Day

Today is Nick's birthday

He is very excited about opening presents, eating cake and dining at his favorite restaurant

It is the simple things

Like glowing birthday candles and colorfully wrapped presents

It is a happy day

But for me it is always a difficult one

I am filled with a mixture of emotion

I am happy to see my son so joyous

I share a similar feeling of elation

But still, there is a part of me that will always remember

This is the day that changed my life forever

I grieve for the expectant mother whose joy was stolen

Hijacked by a legion of young professionals

dressed in white coats,

scurrying around the floppy infant

performing tests and procedures

anything to explain why this child is unresponsive

unable to feed

"failure to thrive"

This is the day I learn my son has Prader Willi Syndrome

This is the day my life ends

and a new one begins.

I no longer care for my selfish self

I care for the needs of a fragile other

My fear is so great it is difficult to breathe

knowing that the quality of life

for this complex child

is now in my hands

It is an overwhelming responsibility

But today is a day meant for joy

I bury the memory of this trauma

It is Nicholas' day

I feel selfish for reliving this sadness

and allowing it to fester

But through the years I have learned

buried emotions are crippling

I must find some way

to embrace both the sadness and joy that is my son

the painful beauty of this beautiful pain

that brings such meaning to my life


 Happy Birthday Dear Nicholas
 
 
 
 
 
 
 
 
 
 
 
 
Happy 12th Birthday