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.




Tuesday, December 30, 2014

Special Needs Parenting Mid Life Crisis

Parenting children diagnosed with special needs requires an insane amount of selflessness.

This is not a choice, it is a requirement.

The high level of responsibility assigned to me simply by the birth of my child, created a chaotic new lifestyle for me filled with doctor appointments, therapy sessions, IEP meetings and fruitless phone calls with apathetic insurance companies. Amidst this hectic pace colored by red tape and white coats, there is little time left for fun, frolic or self indulgence.

The first few years of living in such a hellish environment was an abrupt change for me and required a long period of adjustment. I was shell-shocked and survived this traumatic experience by entering a fugue state, moving and speaking without conscious thought.

What I have discovered lately is that after 13 years of moving and not thinking, of performing selfless acts of bravery again and again,

I have become restless.

There is a desperate need within me for defiance, rebellion and extreme selfishness.

Perhaps it is my age, my hormones or just plain old boredom, that has sparked this insurgency, but whatever the reason, I am longing for an adventure, a risk, a chance at last, not to play it safe and ensure the high quality of life for another. I want to throw the dice, risk it all, throw caution to the wind, feel the fresh air on my face as I jump out of an airplane at 30,000 feet.

I want to feel alive.

I believe I am experiencing a Special Needs Parenting Mid Life Crisis.

Typically, I am a play-it-safe kind of a gal. I am fearful of heights, deep water and fast moving things. But lately, I must admit, if an intriguing stranger arrived in a limo at my front door with a bottle of champagne and two tickets to Hawaii for some para sailing, surfing, and rock climbing type adventure, I would leave in a heartbeat.

I admit it.

I want to run away.

This childish feeling is my reality, and what happens to those of us whose lives are devoted to the long-term complex medical care of another.

I long to do things like this:


and this


and this


and this


yes......even this.....


I feel the need to sit here:


to hike here


or to feel the spray on my face here


I am not a psychiatrist.
 But I believe that the intense effort I exert daily
 to keep my children healthy and safe
has created in me,
an unusual need to take some ridiculous risk,
to balance the constant need for sureness
with an adventurous sampling of the unknown.

In a word, I believe I am looking for this:

Freedom

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