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Written with love for David Edge who helped me dream again
It is because of my dreams that I have overcome my nightmares. Linus Pauling The magnitude of changethe awesome potentialwas not lost on this set of new parents. My husband and I gently teased each other over our own dreams for our new daughter. It was fun to imagine the future. Dress-up tea parties, bedtime stories, recitals and so much more. Or maybe she would be a tomboy choosing overalls, frogs, soccer games and erector sets instead. I wondered what dreams she would dream. Would she have artist's eye? A surgeon's hands? A dancer's grace? She would be anything she wanted to be. Our family life unfolded in a classic way. All the typical special times were recorded with snapshot memoriesthe while lace baptism gown, baby's first Christmas ornament, the carousel birthday cake, vacations at the beachjust to name a few. Of course there were doctor visits and sleepless nights to make the experience complete. At five, my girl began to have episodes of unexplained vomiting. Probably nothing, but we were sent for a "reassurance MRI" to be sure. There was no reassurance. It was taking too long. There should be no need for contrast with a normal scan. With these words, "Yes mom, your daughter has a brain tumor." My world came crashing down. The next few weeks swirled relentlessly towards complete collapse. The tumor was cancer. The life-saving surgery completely disabled her. She was mute, blind, incontinent, and completely paralyzed. She would need a tube to feed her and a shunt to drain off excess fluid. Radiation and chemo would rule the next year of our life. Not only would radiation take her beautiful blonde hair, it would continue to steal foreveror at least until she was gone. Regardless if this was a deal with the devil or a bargain with God, she was tattooed and scarred from now on.
Shattered lives continue. Wounded souls search the rumble desperate for hope. At work one day I came across a quote from Hippocrates about healing. As one who took the Hippocratic Oath, I wanted his words of wisdom to speak to me. "Healing takes time and healing takes opportunity". I liked it. I could grab hold of it. I couldn't do anything about moving time but I certainly could make opportunities. Every activity, every interaction, every moment was designed with healing in mind. Every little detail was analyzed. I was the manager, therapist, teacher, friend, cheerleader and educator for this child. The importance of critical evaluation pushed all feelingall painaside. She did get better. Slowly she learned to hold her head up, and sit. Her eyes came back, as well as her voice. As she started coming back, I wanted more "normal things." She had been injured by surgery but was not sick. She did not need more time in the hospital. I searched for alternatives that would meet the goals. We formed a play group. She had tumbling and swim classes. She even took Spanish at the library. One morning driving by the old dance studio, I decided that we should do dance. Dance would be perfect for balance, stamina, and coordination. She would be able to practice the skills we needed to attain in an environment of normal kids. For social interaction and gross motor skills, dance was an excellent option. At least that was my dispassionate analysis of the situation. Perhaps it was more than that. Perhaps I could dare to hope to dream again.
Pre-dawn Saturday, I rousted my bald six year old out of bed and dressed her in a dance leotard. We arrived outside the lesson roomher in a stroller with the NG tube pinned to her clothes. Some of the other girls huddled together whispering to each other. Other had their moms finishing their hair in braids or ponytails. My girl pulled at the neckline of outfit just to make sure the port was hidden. It was going to be hard. I had been granted special approval to assist with her in the class. My daughter had a chair against the wall at the end of the row. Tap looked close to impossible. The movements were rapid and repetitiveshe might never be able to keep up. The shoes seemed too slipperyshe might never be able to stand up. I tried to convince her to do just one toe point. Not a chance. Few would have called it fun. Dance was workan exercise in sheer determination and perseverance. The first month, she just sat in the chair and watched. The toxicity of the chemotherapy had caused her to lose feeling in her legs. She could no longer lift her toes. The next two months at least she tried. I knelt behind her holding her waist whispering words of encouragement in her ear. Supporting her body was easier than her spirits. The disparity was simply too great. At Christmas, I had a decision. I had to decide whether "it was worth it" to buy the recital costumes for May. Without them we would have already made the decision that it was too much to ask. With them we could dream of ballerinas, sequined dresses and pretty hair. Even if we didn't make it, I had to try.
The recital night was a perfect spring evening in May. Taking my place in the audience, fear crept in. The auditorium was huge and cold. The costumes had little material and she had no fat to keep her warm. The lights were bright; the sound system loud. The stage was slippery and she had only worn the tap shoes once before. Too much could go wrong. Finally, her class came out and lined up. My girl was beautiful in her pink sequined dress. She looked like all the other girls with a cute bobbed haircut. The music startedeight toe points, eight side steps to the left, eight to the right. She was doing it. No one could have guessed the insurmountable odds that were overcome. It was perfect. She took her bow. As the girls filed off stage, I fled to the parking lot sobbing uncontrollably. The intensity of emotions finally swept over and engulfed me. It had been so long. It had been so hard. It had been so difficult to keep the faith.
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