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.

Sunday, October 28, 2012

The Victim, The Persecutor and The Hero

According to William Shakespeare:

All the world's a stage,
And all the men and women merely players;
They have their exits and their entrances,
And one man in his time plays many parts....

Taoists philosopher Yun Xiang Tseng has a similar theory, he calls it the Game of Life. In this game, there are several players:

The Victim
The Persecutor
The Hero

According to Tseng, each of us plays each of these roles throughout our daily life.

He warns however, that sometimes these roles are not what they appear. When you are a hero, you are sometimes a victim. When you are a victim are you seeking to prosecute? When you are a prosecutor do you believe you are a hero?

The secret he says, is to play each role with gusto, to enjoy the position you are playing. But when the day is done, remove your mask, and separate yourself from your role. This he says, is the key to happiness. To the Taoist philosophers, emotions are like decorations in the living room. It is important to notice and explore them; but when you are done it is more important to place them back upon the shelf where they belong.

As a parent of two children diagnosed with special needs, I am all too familiar with these masks.

When my son Nicholas was first diagnosed with Prader Willi Syndrome, I felt betrayed, and played the role of victim.

When I battled with schools, insurance companies and drug companies, I felt angry, and played the role of persecutor.

When I fought the fearsome forces of disease, I felt alienated and misunderstood, and played the role of a reluctant superhero.

Stan Lee's The Traveler by Boom Studios

I have discovered that I have become addicted to my masks, without them I do not know who I am.

The masks serve an important function. They protect my fragile heart. I am afraid that if I take them off, I may become weak and emotional, unable to provide my sons with fearless leadership and continuous critical care.

But lately the masks feel heavy. They do not feel real.  I am beginning to feel angry, bitter, resentful and tired. I have lost my desire to enjoy the play. I have lost my desire to enjoy this Game of Life.

The "me" beneath is struggling to be seen and acknowledged once again.

"Special needs parent" is a role I play, it does not define who I am.

When you are caring for others it becomes difficult sometimes to care for yourself.

At the end of my day can I remove my mask, put it back on the shelf and enjoy myself, my family and my life?

What is it in life that makes me happy?
Who are the folks that bring me joy?
Who is the real me and what do I look like?

These are the questions that finally bring a feeling of freedom, joy and peace to my heart.

Can I begin to understand the interesting and accomplished actor who resides beneath the mask?

Will it help me to enjoy this part I am playing, meeting each challenging day with a sense of enthusiasm and discovery, knowing that this day, this moment (good or bad) is exactly what was meant to be?

Can I learn to enjoy this Game of Life?

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