My Child's Pride

My oldest child, Harli, has Angelman Syndrome which not only renders her physically challenged but also unable to speak. I have watched her from infancy struggle and wage war with each little milestone. I quickly became aware of how, what I thought were the simplest things in life are taken for granted.
The pride that I see in her face each time she overcomes a challenge is brighter and more beautiful than the midsummer sun, and by far the most heart warming experiences of my life. She is a very outgoing and social child. Her thick dark curls and sparkling gray eyes are a contrast to her milky, china-like skin, which is a complete opposite of her sister.
Destini, my youngest, is what one might call ‘typical’ or ‘average’. She is a very quiet and shy child. She strays from social situations and prefers to sit back and be the observer, even with her classmates and peers. Her thin and frazzled dark blonde hair is measurably subdued by her tranquil amber eyes and softly tanned complexion. She reached each of her developmental milestones in the time one would expect. I was comfortable with the fact that I have two very wonderful and very different children in more ways than just their appearance.
One brilliant, breezy day in late July 2001, Destini was eager to remove her training wheels from her bicycle. She anxiously asked me if she could take her bike over to our neighbor Dale’s and have him do the honors. I shook my head and reminded her of the summer before.
She had valiantly strolled over to Dale’s garage and timidly tapped on the door. As the door swiftly swung open, she lowered her soft doe-like eyes and mumbled “My mom says you gotta take these off”. She motioned toward her training wheels on the bicycle that accompanied her. Carefully disguising his amusement Dale paused from his work to complete her request, wishing her luck and sending her on her way.
Beaming with excitement, not unlike that of a general returning from a successful mission, she ran home to tell me she was going to ride her bike without the training wheels. She wanted her sister and I to accompany her outside and witness this magical moment of transformation.
Once Harli and I were outside, I put my little girl on her shiny metallic pink bicycle. Fastening her coordinating bright pink and purple helmet to her head I instructed her to hang on to the soft padded handle bar grips. I pushed and guided her down the sidewalk. Every two feet or so she would jump off. Reassuring her that she would be fine, after all I had a hold of her, I kept putting her back on the bicycle. However, the rising fear of those two wheels moving under her, like an invisible enemy in the jungles of war, was more than she could handle. It wasn’t long before she threw up the notorious white flag and was insisting I put those training wheels back on.
Now here we were, a year later, and she was contending once again that they come back off. As she was appealing her case over and over, I gave in to my miniature Perry Mason and reluctantly removed them for her.
Like deja vous I was once again guiding and pushing. My hand vibrated on the back of the seat from every little bump and jerk caused by the old clay brick path. To my amazement she didn’t jump off. She kept pedaling and pedaling while wavering and wobbling along. After brief moments I would let go and sure enough she would topple over. We both smiled and laughed as she yo-yoed up and down the sidewalk like a basketball searching for the victory point. Before we knew it, we were in to late afternoon and it didn’t seem we were making any progress. I changed tactics and told her to keep telling herself that the training wheels were still on the bike. I encouraged her to say it out loud as she pedaled along.
There she was, pedaling with all her might, not unlike the little engine from the story book she loudly recited over and over “I have training wheels. I have training wheels.”
I watched the pink Mongoose bicycle with its purple and iridescent streamers flowing from the bright white handgrips. I listened to the clink and clank of the fluorescent beads sliding up and down the many spokes of each tire. It was a beautiful symphony of courage and passage. Destini was riding her bike!
With a true parents joy I watched as she pedaled and rode her bike. The loud crunch of cedar bark broke into my personal celebration signaling she had ridden straight into the tree! Running to get to her, I saw upon her face something I didn’t expect at that moment. Along with the apple red cheeks beaten by the wind, were scratches from the evergreen needles as they marked their territory upon her arms and legs, and radiating above all else was joy on my child’s face.
It didn’t matter she had crashed into a tree, it didn’t matter that she skinned her knees or cut her chin. All that she cared about was that she had ridden her bike all by herself!
The pride projecting from her looked as though she had won the lottery. Perhaps she had. She won her first game of chance and her eyes celebrated with sparks of fireworks and ballets of twinkling stars.
So as we spent the rest of the evening learning about steering and braking I came to appreciate the greater lesson I learned that day.
I still view my children as two very different people, but regardless of ‘ability’ I now know that their sense of accomplishment is the same.
No matter who we are we all celebrate in life’s simple pleasures, another common thread binding us all down this ever winding road......
t.r mugler