“Would I Have Chosen Not To Have This Child, Had I Been Given That Choice, Knowing Her As I Do Now?”

Story by Jaye Lewis

To look at her, one would never know. With her red-gold hair and her sea-green eyes, one might never guess. With a smile so bright, she could shame the sun, and a laugh that rolls out like the breaking dawn, and a caring spirit that warms all who know her, one might miss her struggle. She is beautiful, brilliant, and funny. Her small, perfect hands are lovely, and to see them folded in her lap, or softly touching a child’s cheek, one might never comprehend her great effort, just to sign her name. Her name is Helen. The Greek name, meaning “light,” is a perfect reflection of her personality and character. Her name could also be “courage,” for courageous she is.

We first knew that something was happening, as Helen entered puberty, and her voice began to change. A slight quaver at first, in time became a tremor. A gifted singer at four years of age, her beautiful Irish soprano began to disappear by the time she was ten. By fifteen, she was unable to “speak-up” in her classes, and her voice would often disappear as she struggled just to make herself understood, word by word.

I had been a trained singer, and I remembered a similar struggle as I entered puberty, so I began to work with Helen, especially with her singing, training her to depend upon her diaphragm, rather than her vocal chords. However, the tremor in her speaking voice never completely recovered, and it would be aggravated under extreme stress.

We noticed that Helen held her pen with extreme tightness, when she wrote, and we tried to encourage her to keep a light touch, so that she would not tire her hand. All this was to no avail. We took her from specialist to specialist, and there seemed no answer to her ever increasing struggle. By the time Helen was twenty, it was obvious that something was terribly wrong. She could not write, yet she kept going. She would contort her hand, just to sign her name. Her voice became faint, and she could not pronounce certain letters, but nothing could stop her sense of humor, or her courageous journey towards excellence.

She excelled in every job she ever had. She taught herself to write with her other hand. She finally found a doctor who was able to give a name to her condition, “dystonia.” Although there seemed no reasonable course of treatment, she absolutely refused to give up on her life! She went back to college, at twenty-five, and she was just amazing in her engineering classes, making 4.0s in subjects that I could neither pronounce nor spell. Throughout these incredible achievements, Helen was the first to laugh at herself, and to make light of her struggles, as she both worked and went to school.

During all this time, Helen’s faith in God, and in herself, seldom wavered. She knew that she was in the hands of a loving God, and with the love and support of her family, Helen continued to succeed in every endeavor. However, time and the course of her disease, finally made it impossible for Helen to continue without assistance. We are fortunate to live in a country where no one need be left behind, unless one chooses to give up. Assistance in funding for school, and the tools to succeed were more than available, and now Helen is part of a research program through the National Institute of Health (NIH). There is, now, hope for treatment.

Helen is disabled, but she is not handicapped. Being “handicapped” is an indictment one gives to oneself. When one is DISabled, one can still be ENabled. The only thing holding a person back is oneself. Helen is proving that one can achieve under extreme difficulty.

As Helen’s mother, I will soon be involved in the NIH Dystonia Research Program, along with her, to see if I am a carrier of the gene which causes dystonia. Helen will soon be 29, and, of course, 30 years ago, there was no such thing as genetic testing. I’m glad it did not exist. If I knew that I carried a genetic defect, perhaps I would have made the “proper” decision to not pass on my defective genes. We didn’t know in those days. We didn’t have those choices.

Would I have chosen not to have this child, had I been given that choice, knowing her as I do now? I think I would have chosen to give her life. For I would not have missed a moment of this precious life. I would not have missed a single breath, nor a smile, nor a laugh. For a life without Helen would be a poor life indeed. She is my precious, beautiful daughter, a bright, shooting star, who has enriched my husband’s and my life, beyond our wildest dreams.

It is true that Helen has a disability, hidden from view, at first glance. But don’t we all have hidden disabilities? Don’t we all have that “cannot achieve” disability that we nurture deep inside the dark reaches of ourselves, because of the unkind judgments we collect through life, from teachers, peers, or even, sadly, sometimes our parents?

When life seems impossible to me. When dreams seem unachievable to me. I like to look at Helen, and I think, my-my, how pale my life would have been without her. How inspiring is her courage and strength. Helen is my youngest child, and as her name means “light,” perhaps her story will light up your life.

Helen is a shining example of what one can achieve, in the face of adversity. Helen is proof that IF YOU CAN DREAM IT, YOU CAN ACHIEVE IT. So, strive for excellence. Reach beyond your grasp. Who knows what dreams will become reality, if you only reach for them?

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