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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Fasten your Seat Belts, It's Going to be a Bumpy Night

Forecasters have been predicting it for days. We have watched endless weather reports and updates.

It looks like Hurricane Sandy is on her way toward our area with a projected landfall in the New Jersey/New York area.

What does that mean for us here?

The storm is scheduled to occur here on Monday and Tuesday. It should reach it's maximum potential in this area sometime around Monday evening. So fasten your seat belts folks, it's going to be a bumpy night.

By Monday, Hurricane Sandy will have merged with an oncoming Nor'easter, to produce a type of hybrid storm....a Nor'estercane....so to speak. The storm will have the intensity of a hurricane but it will behave more like a Nor'easter spending it's time just sitting over our area. We are expected to have 36 hours of sustained winds of 50 mph or more with gusts over 70 mph. Folks in New Jersey will see far worse.

I have never seen a storm like this one before.

The wind field will be several hundreds of miles wide, so where it officially hits is kind of irrelevant since the core winds will be felt by many of the surrounding states, ours included.

We will be on the side of the storm where there will be less rain but more devastating winds. The Governor of Massachusetts has already issued a "State of Emergency" to free up federal funds that may be needed quickly.

We will most definitely lose our power. I suspect it will be for a long time since the high winds will effect such a widespread area.

I will try to keep you all updated on the storm as much as possible until we lose our lights.

For those of you unfamiliar with preparing for a hurricane, here's what we do.

Bring in all lawn furniture, toys, gas grills, hanging plants, etc.
Fill up cars with gas since it could be weeks before power is restored to local gas stations
Get cash as banks and ATM's may not be operational.
Keep portable radio on hand.
Charge up cell phones, use car charger if necessary.
Stock up on nonperishable food.
Stock up on water for drinking and bathing....many folks around here have well water run by electricity.
Flooding can also contaminate water from wells.
Fill bathtubs with water for bathing.
Stock up on batteries for flashlights, radios etc.
Stock up on gasoline for chain saw, and generator use.
Expect basements to flood so pull up anything you do not want to get wet from the floor.
Remove dead branches or dead trees that are close to your home.
Clean leaves out of gutters
Board up windows if the home sits on the coast.
If winds are expected to be sustained at over 50 mph, sleep in the lower levels of the home or basement to avoid the potential of a tree falling on the house.

Nicholas's growth hormone requires that it be refrigerated. If we lose power for several days, his medication will go bad. Because of this, we purchased a gas-powered generator. It is important that we stock up with enough gasoline to keep it running for days, or even a week.

Once the storm hits, it's hunker down and ride it out.

I have been in several hurricanes, what I remember most about them is the sound of the trees snapping like twigs, the very loud roar of sustained winds, and the feel of the house swaying on its foundation.

Whatever Sandy throws our way, we are ready.
Stay tuned for more updates......

Buzzards Bay Massachusetts during Great Hurricane of 1938
file photo Boston Globe