Life's Lessons
by Mark W. Haeussler

In December, 1991, my wife, Charlotte, and I were given our greatest Christmas gift when we adopted our son, Kyle. My life changed dramatically when we adopted Kyle; life changed again just as much when he was diagnosed with cerebral palsy and seizure disorder. I felt I was barely qualified to be a father, let alone capable of guiding a child with a disability. Our challenges increased when my wife became afflicted with Huntington's disease, a devastating (and eventually fatal) brain disorder. Those events have been very humbling, but they are also, in a way, liberating; views of life have been freed from the "normal." I am learning that I can do more than I used to think, while also learning that I have limits that are sometimes equally surprising. But when I am asked how I make it through each day, I usually answer, "I don't know." So I spent some time searching myself to recognize what my life is teaching me. Here is what I am learning:

1. My life has much more meaning now. While my life is filled with an excess of daily challenges, I have a very clear purpose in life. We rarely recognize the gift of purpose in our lives, and in a time when pleasure is equated with happiness, it is not surprising. So many people are unhappy because they have no true meaning in their lives. Pleasure is no substitute for a fundamental sense of purpose; helping others, doing what is right, creating love -- these things endure.

2. I try to concentrate on why I must do things, more than how. When I stop and think of how I am going to make it through the day, I am sometimes overwhelmed. When I think of why, the way is clear, and most often, the how falls into place. A Scottish proverb reads: "He who counts all costs never puts the plow into the earth."

3. We have choices every day, every moment, in how we face life's challenges. We may have little control in what life gives us, but we have tremendous control in how we live that life. Each morning I have the choice to face the day with courage or with cowardice. I undoubtedly make my share of poor choices, but I hope each day that I am able to find the path of courage. I am reminded by the Disney movie of Pinnochio, and what the Blue Fairy demanded of him to become a real boy: "Prove yourself brave, truthful, and unselfish."

4. Life is very messy and complex. Most of our ways of viewing and categorizing the world are fairly arbitrary. We group plants, animals, behaviors, people and so on by criteria that don't exist in a substantive way in reality. I suppose it is our way of making some sense of the world around us, but it is not particularly effective in making sense of children with disabilities (and even those without obvious disabilities, for that matter), as these labels serve only to identify differences from other things, rather than providing a true description of the individual. So I believe now that most of the categories and expectations relating to disabilities are often irrelevant, and so I try my best to keep that perspective.

5. Sometimes there are nuggets of gold out there than many people don't see because they are not as easily recognized. Our son is blessed in so many ways of not having disabilities common to "ordinary" children. He is kind and sincere, well beyond most people, and he possesses tremendous determination. The simplest accomplishments, such as successfully climbing the ladder on the playground slide, bring exuberant joy to my son; the rest of us take for granted that wonderful orchestration of our bodies. If we alter our own perceptions a bit, we can often find great beauty and goodness right before us.

Mark Haeussler
Mesa, Arizona
E-mail: MarkAmarok@aol.com

I wrote this poem for the adoption finalization of Kyle.

Kyle

We got an early Christmas present in '91

A wondrous, handsome, baby son!

We became a family

That day you came to Charlotte and me.

I'm fond of the midnight cuddlings to calm your cry

The feedings, the burping, even keeping your bottom dry.

The shopping trips to buy you a new Snoopy shirt

And how, with the girls, you really flirt.

And each trip to the zoo

Mother, me and you

Is a treasure

Beyond compare and measure.

While each triumph you earn with determination

You seem to know too that life is meant to be fun

Your giggles and laughter splash over me

Causing my worries to go free.

Hugging you is a must

when you reach for me with trust

And looking at those deep brown eyes

I pause, and breathe deep sighs.

So on this day, we celebrate

With friends, family, and my mate

You, who is always with a smile

Our son, the one we named Kyle.

 

Mark Haeussler
9 April, 1993