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.




Friday, July 8, 2011

Special Forces

I am the mother of a child diagnosed with special needs.

I am a soldier.

I train. I prepare. I fight. I sleep very little. I am mentally sharp and emotionally subdued. I am entrenched in a hellish whirlwind of a life that consists almost entirely of battle, hardship and stress.

I sit by hospital bedsides in intensive care units at Children’s Hospital. I thread feeding tubes and deliver medications through PICC lines. I perform medication trials. I diffuse violent rages. I consult with specialists. My battle gear is assembled with lightening speed, tools like gait trainers, trip trapp chairs, and walkers.  Precious spare time left to myself is used solely for rest and rejuvenation.

Despite this hellish fate, like a true soldier, I carry on.

I am alert, my hearing fine-tuned as I listen for the sound of approaching danger. I can detect even the faintest sound of an oncoming attack, a soaring fever, an escalating behavior, a silent seizure.

Like a Green Beret, my quiet nature and seasoned gaze is intimidating to most. Few folks understand that an assertive attitude and a sharp mind and tongue are just the end result of the intense basic training each parent of a child with special needs endures. It is an elite hard-core immersion program that challenged my sanity and made me question every dream I ever held dear for my child.

Like a young Army recruit needed immediately on the battlefield, my training was fast-tracked.  I was delivered too soon to the front lines where I found myself immersed in all-out war. I was drafted unwillingly into an insidious battle with an elusive attacker that threatened to hurt my child and rob him of a happy future. My biggest fear while fighting was that my inexperience in this arena would take me out too soon.  If so, who would protect my son and guarantee his peaceful and happy future?

I have become a special needs soldier.
And although I am surrounded by others, I often feel alone.

You here are my sisters and brothers, bonded to me by fate instead of birth. And although we don’t share the same blood, we have shed much of it together on the battlefields, fighting these terrible beasts.

Since my son was born, I have been drawn to reading books about World War II Veterans. Perhaps it is because I, too, feel like a survivor of war. As I read their horrific experiences, I am struck by how much I can relate to their brutal tales. Like those men who stood together boldly on the front lines of the battlefields, I too feel a deep bond, a life long connection to my fellow special needs soldiers, a bond that forms from those who have shed much blood, sweat and tears together.

In most of the war stories I have read, the soldiers speak of terrible images they re-live over and over in their minds. I know of what they speak. Each time I read an e-mail of a new parent whose child has just been diagnosed, it is as if I am transported, once again, to the bedside of my infant son.


Flashbacks of images of tiny wires covering his head fill my dreams at night. Often, I reflect on my son’s birth and picture the yellow tube taped harshly to his face and the stark catheter inserted into his skull to fight off the infection of unknown origin. I still see his tiny body strapped into a harness that looked like a medical straight jacket.

When these soldiers describe their experiences coming home from war, I am struck by the sudden realization that I can never go home. I will be fighting this war forever. Much like the Veterans from the Vietnam War, I feel like I fight in an endless war that nobody recognizes.

Where is my Silver Star, my Purple Heart for the many invisible battle scars my body bears? Where is my Medal of Honor, for so bravely battling the forces of oppression caused by the evil empires known as Prader Willi Syndrome, Epilepsy, ADHD and Asperger’s Syndrome? Is there no recognition for selflessly exposing myself to the atrocities of parenting a child with special needs? It is a sacrifice no less honorable isn’t it?

I understand when parents here write about how they just can’t feel anymore. I too suffer from emotional paralysis. I believe the soldiers call it battle fatigue. And so I write and the emotions come pouring from my body like blood from a battle wound. This exodus of words has helped me to purge out those toxic emotions, to try to see this journey, not as a war, but as a pilgrimage, a voyage of hope with my family, a peaceful pathway toward freedom for my child and myself.

When the constant stress of war begins to take its toll on me, I often become bitter and angry, impatient and intolerant. It is always my “disabled” child who saves me from the depths of this downward emotional spiral. For it is only when I watch my son relate to the world do I begin to feel some peace again. It is his loving heart and his innocent spirit that proves to me, at least, that he is the “normal” one.  It is his innate ability simply to love and inspire others that calms the warrior spirit within me. It is only when I stop fighting, put down my weapon, and look around me, that I finally see all that is beautiful in this world. It is only then that I am worthy enough to share in my son’s spiritual quest. It is only then that I truly feel a sense of peace.

I do hope someday that the words shared here on this website will help awaken the world to the beauty of our children and the loving and important contributions they make each day to improving the lives of so many others in this world.

I am thankful to Hopeful Parents for giving me an opportunity to educate the world on the hardships and rewards of raising my children so perhaps one day we parents could have a national holiday devoted to honoring our sacrifices, our accomplishments and our beautiful children

When I hear, the few, the proud, the brave, I think of all of you.

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This post was published at www.hopefulparents.org. Please visit this site for inspiring writing from parents of children diagnosed with special needs.

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