Scoliosis: Confronting fears and finding happy endings

Maia's teacher noticed something unusual about her spine, and suggested that we have it checked. I looked at Maia’s back, and did not see anything wrong. Photo: File

WASHINGTON, July 22, 2011—As a child, I liked to sing, and I begged my mother to let me join the school choir. I imagined myself singing the most difficult solo parts to an audience enthralled by my angelic voice.  But my mother never thought of me as an angel nor a singer. To her, choir practice was a waste of time better spent doing homework.

That did not stop me from singing though. I would belt out the latest hits playing on the radio, and that meant the very syrupy ballads of The Stylistics. I sang with abandon until one of my mother’s mahjong friends heard me, and told her I would never earn my living as a singer ­– a comment that my mother promptly relayed to me.

I stopped dreaming of joining the choir. I stopped singing. A comment that was probably just uttered in jest made me unable even to sing Happy Birthday before the candles on the cake were blown out.  It robbed me of the pleasure of singing along with everyone at karaoke parties, and of belting out my favorite songs in the shower.

I only started singing again when Maia was born. Somehow I knew she would not mind if I imitated Julie Andrews in The Sound of Music while I bathed her, or entertained her during meals with my version of the classic ABCs, or put her to sleep with Twinkle, Twinkle Little Star.

Maia grew up with a love for singing. She was never content to simply sit and watch Aladdin’s Jasmine and The Little Mermaid’s Ariel. She had to get up and join them in a heartfelt rendition of “A Whole New World” and “Kiss the Girl”

In second grade at the United Nations International School (UNIS), she and her Korean-American friend Stacey signed up for the annual talent show. They agreed on singing I Love UNIS, a song they composed by writing the lyrics to the tune of The Aristocats’ “Scales and Arpeggios”

Unfortunately for Maia, Stacey was a no-show.  Although she was at school, she was not backstage at the theater, where she was supposed to be. Her parents did not want Stacey to embarrass herself – but I suspect they did not want her to embarrass them with such an amateurish performance. Maia had to sing on her own. She looked so small on that large stage. Even with the microphone, her voice was small, but it was steady from start to finish.

Maia continued to sing throughout her three years at the American School in Japan. I encouraged her to join the school choir, and she never missed a practice, not even for homework. After all, there is more to a child’s life than homework.

I never imagined her as a professional singer, but unlike my mother, I thought she was an angel – sent to sing specially for me.

In Vienna, the music capital of the world, voice lessons were offered after school at the Vienna International School (VIS), and Maia eagerly started formal vocal training. She learned to sing from deep inside her diaphragm, and to stand straight in order to project her voice.

Maia liked her young teacher, and especially enjoyed the back massage she got at the start of every lesson. We both discovered the importance of a straight spine to good singing, and Maia stood straight as a rod during her voice lessons.

She also sat straight when she sang at the piano, practicing her piano pieces – as usual, songs by The Carpenters.

About a year after starting voice lessons, Maia came home to tell me that her teacher noticed something unusual about her spine, and suggested that we have it checked. I looked at Maia’s back, and did not see anything wrong. Of course, I did not know what I was looking for, and I had no clue how to find what was wrong.

Our primary physician, Dr. Maruyama, ordered x-rays of the offending spine, and as Maia prepared for her very first encounter with radiation, I sat in the waiting room wondering how anything could be wrong with her spine. After all, she had never suffered a fall. Maia was a cautious child. She never went head first on a slide, nor did she ever jump from high places. The most daring thing she ever did was swing from the monkey bars.

With the x-ray films in hand, we went back to Dr. Maruyama, and after looking at them, she made a few calls, and in our presence mentioned scoliosis. I had no idea what she was talking about, but Maia who was patiently sitting beside me started to tremble and silently cry.

I always thought I would rejoice the day Maia knew a word I did not, but I certainly did not feel like celebrating at that very moment. Maia was a voracious reader, and she had learned all about scoliosis from Deenie, a young adult novel by Judy Blume, about a girl who spends her adolescence in a back brace

When Dr. Maruyama turned to inform us that she suspected scoliosis, I reacted with a calmness that belied the incomprehensible fear I had inside. As I listened to Dr. Maruyama instructing her secretary to book an appointment for the following day with a scoliosis specialist, my mind was racing for a way to reassure Maia, to let her know that Mommy will do everything to make her scoliosis go away.

But Maia was way ahead of me. She knew that there would be a happy ending. After all, that was how Deenie’s story had ended.

On our way home, we stopped at our favorite Viennese café for schokolade palatschinken, the German version of chocolate crepes. I was in no mood for fancy pancakes, but Maia and I always treated ourselves to something sweet after visits to dentists and doctors. Of course, this was the first time we had an unfamiliar disease to be frightened of, and to worry about, but I instinctively knew that I had to make everything as normal as possible for Maia. And I had to make myself believe that there was going to be a happy ending, something that I found more and more difficult to have faith in as I grew older.

While we waited for the day we were to learn more about this disease that was completely invisible to me – and still absolutely painless for Maia ­– I spent sleepless nights worrying, but during the day, I acted like all was right with the world. I turned to the Internet for information, and expected the very worst: invasive spinal surgery that went horribly wrong and paralyzed the patient!

By the time Maia and I were sitting before Herr Doktor Altmann, I was convinced that I knew everything there was to know about scoliosis, but I was still unprepared for the shock of seeing the x-ray films against the lighted board.

There it was – a spine that was curved like the letter S.

How could I have missed it! I was her mother. I had bathed her. Washed and dried her back. Dressed her.

I took her to the ophthalmologist for yearly eye exams. That is how I knew she needed glasses in first grade. Dental cavities were kept at bay with frequent visits to the dentist, and with annual health exams conducted at her schools. I was led to believe that Maia was growing as she should – healthy and strong.

A type of brace that may be used for Scoliosis correction

A type of brace that may be used for Scoliosis correction

I blamed myself for not knowing that in American schools, the spine was checked for scoliosis in sixth grade. We left the American School in Japan after fifth grade, and the Vienna International School did not conduct annual health exams. I made sure Maia had all the necessary immunizations and vaccines but I failed to monitor the growth of her spine. Learning that scoliosis was hereditary, and that one of my own first cousins had it, compounded my guilt.

I watched Dr. Altmann check Maia’s spine. She bent over, and not only did the crooked spine become visible, but the slight hump to the left of the spine, and the small recess to the right, also became hard to miss. Why had I never noticed? Why did I not look at her back whenever she bent down to pick up something?

Dr. Altmann also pointed out that her right shoulder was slightly higher than the left, and that her left leg appeared longer than the right because her left hip bone was lower than the right. And all of a sudden, I saw all the symptoms of scoliosis, all the signs that I had missed even while looking at her every day since the day she was born.

I was looking but I was not seeing! I was not vigilant enough!

I did not feel better knowing that there was nothing I could have done to prevent it. Scoliosis was not caused by heavy backpacks or bad posture – it was just genetics

Dr. Altmann confirmed what I had learned from the Internet. A bent spine could never be straightened without surgery. He recommended using a back brace until Maia stopped growing, but the most we could hope for was to prevent the curves from getting worse. Success was far from guaranteed, and not all children tolerated wearing a brace for several hours a day for several years. Some children opted not to brace, waiting instead to see if surgery was needed once growth stopped. I was told that I had a choice.

Yes– as her mother, I was expected to make the decision, but it wasn’t me who was going to have to spend 16 hours a day in a brace that would squeeze and compact my torso for the next few years. It was Maia, and I knew we had to make this decision together.

I asked Dr. Altmann to give me a few minutes to talk to Maia in private, and although he was baffled by my request, he allowed us to come back after a short break in his waiting room.

I was intent on convincing Maia to give the brace a try, but even before I could open my mouth to utter the first word, she announced that she was frightened of surgery, and that like Judy Blume’s Deenie, she was prepared to wear the brace. I nodded in agreement, and felt like we had a fighting chance against scoliosis.

Maia wore the brace until her senior year in high school. She had it on for sixteen hours a day until she stopped growing. We will never know if it saved her from surgery, but the last specialist we consulted did exclaim that with double curves and rotations, it was a miracle that Maia was even walking!

Like Deenie, Maia got her happy ending.

References for more information on Scoliosis (We do not practice medicine or provide medical services or advice. These links are for informational purposes only. You should always talk to your health care professional for diagnosis and treatment.):

The National Scoliosis Foundation

Scoliosis Systems

National Center for Biotechnology Information 

 U.S. National Library of Medicine

Mayo Clinic

Kids Health (information for children)

iScoliosis

 


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Cynthia Lim

Cynthia has lived, studied, worked and parented in more than a dozen cities in four continents.  Born in the Philippines, she is of Chinese heritage -- although she has never been to China, unless we count a few stopovers in Hong Kong -- and is now a Japanese citizen living in New York City.

She has a hard time answering the question, "Where are you from?"  She likes to think of herself as a nomad, or even a hermit crab, toting her home around on her back.

Even while traveling all over the world, Cynthia was able to raise a fantastic daughter -- kind, easy-going, and with admission offers from Harvard, Yale and Princeton, to boot!  Right now, she's looking forward to attending her daughter's college graduation in the spring, but in the meantime, she is keeping busy, taking classes at the French Culinary Institute, and offering seminars on international parenting and child-rearing in general. 

Contact Cynthia Lim

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