Thursday, April 28, 2011

Invisible Heroes

“I think heroes are people who do good or necessary things at great personal cost. Heroism must be judged by the courage and grit required to do what needs doing.”

 Sound familiar to any of you?

These are the opening lines of the book Invisible Heroes by Belleruth Naparstek but the words could also best describe a parent of a child diagnosed with special needs.

From time to time, I stumble across great finds, tools that actually help me in my journey to raise my children. This book is one of those rare treasures.

I wanted to share it with all of you.

In her book, Invisible Heroes, Belleruth Naparstek talks about trauma, what it is and how it can affect us.

When my son Nicholas was born with Prader Willi Syndrome, I never realize that the difficult experience of his birth, the loss of a dream and the overwhelming fear of the future, had caused me to experience a deep and devastating form of trauma. I never realized how living day-to-day caring for my children with special needs had created a kind of constant traumatic lifestyle. I never realized the negative effect this stressed way of living had on my body, my mind, and my precious spirit.

I never realized, that like all of you, I had become an invisible hero.

In her book, Belleruth Naparstek explains how “overwhelming trauma creates such daunting fear and heart-stopping distress that it produces legions of heroes whose every day is a test of their mettle, commitment and courage.”

The author explains that the normal way of dealing with trauma is to talk about it. But because of the unusual way traumatic experiences are stored in the brain, traditional talk therapies may actually make symptoms worse, potentially causing flash backs, anxiety, depression, panic attacks and more.

I often wondered why from time to time I would feel this way, particularly after talking about the birth of my son.

She talks about the emotional aspects of trauma…immeasurable sorrow, deep grief, rage, numbness, shame and humiliation, loneliness, alienation, despair, helplessness, guilt, blame, regret, a heart ripped open, all of which I have experienced.

She talks about the behavioral aspects of trauma…isolation, disrupted relationships, over-control, avoidance of intimacy, substance abuse, addictive behavior, learned helplessness and my personal favorite, compulsive busyness.

She also talks surprisingly about some of the gifts in the rubble….like joy, compassion, heightened creativity, survivor power and spiritual connection. These gifts I also feel from time to time.

She recommends a type of relaxation technique that uses “guided imagery”…..using pleasant visual images and thoughts to replace the upsetting ones.

These imagery-based solutions use the right hemisphere of the brain-perception, sensation, emotion and movement-rather than the left side’s standard cognitive functions of thinking, analyzing verbalizing and synthesizing…Trauma produces changes in the brain that impede a person’s ability to think and talk about the event …Imagery uses what’s most accessible in the traumatized brain to help with the healing.”

She uses these tools as an exercise in helping to heal hurt hearts.

It is an interesting concept. The information she provides about dealing with trauma has been extremely valuable to me. The book is easy to read and full of valuable insights and tools.

My lifestyle of a parent of a child with special needs is filled with continuous heart-stopping trauma. There are EEG’s and surgical procedures, behavioral challenges and therapy sessions and of course the added stress of constantly fighting and advocating for my children. This trauma wears down my body and my heart.

Having good health is vital to me and to the needs of my precious children since I want to care for them for the rest of my (hopefully) long life. I have discovered lately that my overall well-being is directly proportional to how competent I am at diffusing the trauma I experience on a daily basis.

Invisible Heroes has helped me to realize that since I am so willing to try anything to help heal my children, perhaps I should consider doing the same for myself.

Every now and then I will get a good case of the PWB’s (Prader Willi Blues). These are times when I obsess about the syndrome. I obsess about fixing my child. I feel like I lose control over everything and spiral into a black fog-like depression. I withdraw from my family, my friends and the world. It is an overwhelming darkness that challenges my ability just to get out of bed in the morning.

In an effort to dispel the Prader Willi demons, I have tried creating my own “secret garden” in my mind. It is my own empowering version of  Belleruth’s “guided imagery”. 

It goes something like this….


My Secret Garden

I have a place in my mind that I go to......

Where there is no noise.

It is quiet.

No voices from doctors requesting more tests.

No voices from the indifferent with words that hurt.

It is a place that is sunny and warm, a place where my children can run and play happily together.

In my mind they are laughing, free from the crippling effects of their disease.

Nicholas is healthy and strong. He is muscular and slim, no longer plagued by constant hunger. He is running and jumping while he throws a baseball up into the air and catches it with ease.

Weston is calm and relaxed. He is lying in the fragrant grass on the banks of a lazy stream where he is resting and reading a book.

My garden is filled with healthy green bushes whose buds burst with blossoms of colorful flowers, red, orange and yellow.

The air is filled with their perfume.


There is a narrow dirt pathway that winds through my garden. It is a path only I can follow. Along the path are benches. There is one placed under the shade of a sturdy oak tree that sways gently by the breath of warm summer breezes.

There is another bench perched on the shore of  a sparkling blue ocean. The waves crash onto the shore in rhythmic pattern, slowing the pace of my racing heart.

In my secret garden my mind is released from the day-to-day routine of tracking doctor appointments and managing medications. There is no need for worry. The health of my children is assured. My family is safe.

My secret pathway leads to a small stone cottage with a garden by its side. In the garden, my father, now back to life, lifts a brilliant red tomato the size of a softball. He smiles and waves to me.

Inside the stone cottage, my mother awaits, her vibrant spirit revived, her mind brilliant and clear, freed from the ravaging effects of dementia. We sit at the wooden kitchen table to sip coffee while we hold hands, talking and laughing together.

This is my secret garden, my sanctuary.

It is the place in my mind that I go to when I am fatigued by the incessant stress that accompanies the role of raising children with special needs.

It is a place where my body is no longer tense.

My shoulders are relaxed.

My mind is free from worry.

There are no obligations or appointments.

No thoughtless words from others.

There is only love and peace

and serenity.

I am reborn, my soul is restored, my heart mended, my mind clear.

It is a place where I find my lost inner strength, my precious healing magic energy that helps me to endure.

It is a place in my mind that I go find myself.

What does your secret garden look like?


Thank you for reading, please come visit us on our blog at


  1. It is very hard to get through the struggles and come out like a normal functioning person on the other side sometimes. I feel that often with my son who is diagnosed with Aspergers.

  2. Thank you, just what I needed to read as I worry about myself and my mind and body falling apart.

  3. Thank you both for your comments.
    C... my oldest son Weston has just recently been diagnosed with Aspergers. Which of course caused more trauma for all of us! You are so right it is just iso difficult!

  4. Your visualization is beautiful. Thank you for sharing.