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.

Sunday, January 23, 2011

From Soldier to Shepherd

It has been 12 years since both of my children were diagnosed with special needs and ten years since my mother was diagnosed with dementia. I have never questioned the depth of my stamina in the past, but now must admit, I'm getting tired.

When my loved ones were first diagnosed with illness, my initial reaction to the news was shock, followed immediately by an instinctive impulse to fight these terrible diseases. I fought and fought hard, with reckless abandon, and unbridled passion. I gathered my war gear and fought these beasts with all of my might, hoping to win a victory that was sure and swift.

But the battles persisted and I found myself fighting more than just illness. I fought with the schools for more services for my children. I have fought with indifferent medical office workers to educate them on the meaning of "compassionate care" for my mother. I have fought with greedy insurance companies and complacent employees of the state to ensure we receive the illusive health benefits for which we have paid.

It seems my role for the past 12 years has been simply to fight, my passion unrestrained, my stamina endless.

So, I guess it is not surprising that in previous posts, I compare myself to soldiers and superheroes.

Lately however, my body has started to rebel against this relentless energy-burning lifestyle. At night I am tired, my muscles ache. The unbridled energy that once freely flowed from my limbs, now has its limits. That bright youthful reflection in my mirror has been replaced with an image that looks subdued, grayer. My fiery spirit burns less brightly these days as I am forced to reluctantly admit, I'm getting old.

This sudden realization has got me thinking, it may be time for a new identity.

My children have many more years left of school. After that, they will require transition plans to help them move safely into viable work and life options. They may require long term care after I'm gone. Of course there is also the difficult decision of who will care for them after I am gone? My mother, now in an assisted living facility, may someday require full time care, a nursing home or hospice. I must face the fact that although I may be tired now, I still have a long road ahead of me.

And so I am thinking, I need to slow down. I need to pace myself and visualize this journey not as a sprint, but as a marathon instead.

I am thinking I need a new image.

The images of soldiers and superheroes are no longer relevant to me. What I need is something more peaceful and slower, an image of a shepherd tending his herd comes to my mind.

A shepherd patiently leads his flock over rough terrain with a simple wooden staff instead of a gleaming sword.  He cares for his herd as passionately as the soldier, but walks slower and surer. He is constantly by the side of his loved ones, silently guiding and guarding, conserving his energy, ready to fight with a hand-made sling only when the smell of a wolf is confirmed.

I realize the religious significance of using a shepherd as a metaphor. I am not suggesting that I am God or Jesus. I simply see the humble image of a patient herder to be more reflective of the calm presence and laid-back energy I need to sustain myself in the many years to come caring for my ailing mother and dependent children.

It will be difficult for me in the future, to resist the temptation to lop someone's head off, and bask in the glow of a difficult battle fought and won for those I love. And perhaps the picture of a plain and tattered sheep herder is not as glorious of an image to behold as a shiny and colorful superhero. But it is my children (and mother) who have taught me that it is truly what is beneath our outward appearance that is important, the soul energy inside us, that makes us who and what we are in this world.

So, perhaps a little reluctantly,  I am ready to put down that heavy sword and slow down that lightening pace. I am anxious to find the perfect walking stick that will help me navigate the jagged earth that lies ahead of me for many miles. I am ready to do it slowly, safely and humbly. The warrior spirit at peace, residing quietly beneath the drab garb of a wise and weather-worn shepherd.

I am ready to embrace this new image.

Interestingly, my mother's parents came from a small European country named Albania.

It is a poor yet beautiful and mountainous country in Europe. I remember my Nana telling me stories of the little lamb her father let her raise when she was just a girl. Ironically, her father was a shepherd.

Perhaps it's in my blood after all.


GB's Mom said...

Being the super hero for years and years takes a toll on you physically. {{{Hugs}}}

The Henrys said...

Lisa, this post is as amazing as you are!

I think we are in similar spots right now. I have been feeling much like you have written here. Thanks for writing this so beautifully and so full of heart and love!

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