By Stephanie Scharaga Winnick
Optimism is the foundation of courage.
~Nicholas Murray Butler
Emily did not look like other infants when she was born. She had a distinct appearance facially, standing out among the other babies in the hospital. She was born with Apert Syndrome, which affects physical appearance in several ways. I was first introduced to many of the facts of this rare syndrome when Emily's mother came in to speak to me a few days before first grade. I began to feel a bond with Emily before meeting her because of the window her mother had opened, allowing me to get a sense of this remarkable child. I was also absorbing the very essence of Emily's mother's strength and wisdom as we spoke.
Optimism is the foundation of courage.
~Nicholas Murray Butler
Emily did not look like other infants when she was born. She had a distinct appearance facially, standing out among the other babies in the hospital. She was born with Apert Syndrome, which affects physical appearance in several ways. I was first introduced to many of the facts of this rare syndrome when Emily's mother came in to speak to me a few days before first grade. I began to feel a bond with Emily before meeting her because of the window her mother had opened, allowing me to get a sense of this remarkable child. I was also absorbing the very essence of Emily's mother's strength and wisdom as we spoke.
Emily had experienced sixteen operations by the age of six. Typically, children with Apert Syndrome are born with webbed fingers and toes. One of the surgeries Emily endured was to separate her fingers so that she could hold pencils, utensils, and other objects, despite not having knuckles with which to bend her appendages. Her face did not grow proportionally because she was born without an opening in her skull. This young child was all too familiar with hospitals, their procedures, and personnel.
Now Emily found herself in a new school, a different classroom, with unfamiliar classmates and adults. This amazing child required an aide to assist her with physical and academic tasks, though our goal was to help her achieve as much independence as possible. She located her name on a desk just as the other children did. The students had to follow my directions to empty their school bags and place supplies where directed. I noticed a little girl's startled expression as she focused on Emily. Emily smiled at the child and the little girl smiled back. Such incidents recurred during the day with Emily repeatedly rewarding a different classmate with a smile, a little wave, or both. Never did a student in my class question me about this kind, sweet, happy child or treat her unkindly. In fact, my classroom was a place in which we were all enriched by Emily's presence.
The first time my teaching aide had to leave the room, a child jumped up and asked if she could help Emily. This girl stood over Emily, dotting words and sentences for her to trace, exactly as her aide did each morning. My classroom was set up in tables, four to five desks making a table. Emily and this classmate did not sit at the same table yet she knew exactly how to help. She even whispered words of encouragement and praise. When the assistant returned, the precious little helper quietly returned to her seat.
Another time, two of the more lively boys in our class jumped up shouting out that they would like to be Emily's helpers. I allowed it and witnessed incredible changes come over the two. Each calmed down, gently helping Emily until the return of the aide. One morning a little girl who often had trouble concentrating on her work because she was very interested in what everyone else was doing was the first to ask to help Emily. As always, I responded, "Of course!" This child assisted Emily by helping her to count and add. Their collaboration met with success. And the other child managed to get all her work done, without looking to see what others had written on their papers. A cute redheaded girl often stared into space rarely completing required tasks. Despite this fact, this smart-as-a-whip, freckle-faced child was usually right on the mark when answering questions. Then one day she volunteered to help Emily. The girls hugged each other at the completion of the task, having remained focused the entire time.
During parent conferences I learned what some of the children shared with their parents. A very advanced first-grader who sat next to Emily spoke of her at home. His dad told me that his son explained that it was difficult for others to understand her but that he could understand everything she said. The parents did not know that Emily was special until they met her at a school function. Another parent told me that her son expressed that Emily was the prettiest girl in the class. A single dad told me his son repeatedly asked to have a play date with her. And he did! Indeed, many of the children had play dates with Emily.
Then came that day in March when Emily's mom told me she was to have facial surgery. Our blond sunshine would be out of school from the end of April through the remainder of the school year. In addition to being extremely apprehensive for Emily, I was deeply concerned about the other students. I had to explain her absence and clarified that Emily needed an operation on her face to help her feel more comfortable when speaking and sleeping. I was asked many logical questions. "Did it hurt?" "Can she speak?" "Will she come back?"
Emily's hospital conduct further illustrated her exceptional bravery. Her parents related how she walked into the hospital wheeling her pink carry-on filled with special photographs, letters, stuffed animals, and toys. She told her father, "I do not want you to carry me into the operating room." She explained to the attending nurse that she did not want any medicine and didn't want to wear the blue operating room cap or change into hospital clothes. She was not made to do any of those things while awake. Emily walked into the operating room for the seventeenth time on her own two feet! Her dad told me how he felt humbled when he saw the severe problems of other children in that hospital.
It was inevitable that some of the children would see Emily after her operation, before she came to school for a visit. I had to explain that she was wearing something that looked like a catcher's mask on her face. We discussed the casts one of the boys had on his legs following surgery during this same school year. They remembered that his legs needed to be protected and realized Emily's face needed protection as well. The mask was purple and Emily's doctors and family referred to it as Purple. Some of the children viewed Emily in her mom's car picking up her brother from school. Some visited her at home. Each child who saw her came to school elated and greeted the class by shouting, "I saw Emily!" My concerns for her classmates were allayed as not one child who had seen her mentioned Purple. And yes, my first-graders had the ability to perceive the heart of Emily and I feel certain that she will continue to use her remarkable strength of character to surmount the struggles she has yet to face.
Now Emily found herself in a new school, a different classroom, with unfamiliar classmates and adults. This amazing child required an aide to assist her with physical and academic tasks, though our goal was to help her achieve as much independence as possible. She located her name on a desk just as the other children did. The students had to follow my directions to empty their school bags and place supplies where directed. I noticed a little girl's startled expression as she focused on Emily. Emily smiled at the child and the little girl smiled back. Such incidents recurred during the day with Emily repeatedly rewarding a different classmate with a smile, a little wave, or both. Never did a student in my class question me about this kind, sweet, happy child or treat her unkindly. In fact, my classroom was a place in which we were all enriched by Emily's presence.
The first time my teaching aide had to leave the room, a child jumped up and asked if she could help Emily. This girl stood over Emily, dotting words and sentences for her to trace, exactly as her aide did each morning. My classroom was set up in tables, four to five desks making a table. Emily and this classmate did not sit at the same table yet she knew exactly how to help. She even whispered words of encouragement and praise. When the assistant returned, the precious little helper quietly returned to her seat.
Another time, two of the more lively boys in our class jumped up shouting out that they would like to be Emily's helpers. I allowed it and witnessed incredible changes come over the two. Each calmed down, gently helping Emily until the return of the aide. One morning a little girl who often had trouble concentrating on her work because she was very interested in what everyone else was doing was the first to ask to help Emily. As always, I responded, "Of course!" This child assisted Emily by helping her to count and add. Their collaboration met with success. And the other child managed to get all her work done, without looking to see what others had written on their papers. A cute redheaded girl often stared into space rarely completing required tasks. Despite this fact, this smart-as-a-whip, freckle-faced child was usually right on the mark when answering questions. Then one day she volunteered to help Emily. The girls hugged each other at the completion of the task, having remained focused the entire time.
During parent conferences I learned what some of the children shared with their parents. A very advanced first-grader who sat next to Emily spoke of her at home. His dad told me that his son explained that it was difficult for others to understand her but that he could understand everything she said. The parents did not know that Emily was special until they met her at a school function. Another parent told me that her son expressed that Emily was the prettiest girl in the class. A single dad told me his son repeatedly asked to have a play date with her. And he did! Indeed, many of the children had play dates with Emily.
Then came that day in March when Emily's mom told me she was to have facial surgery. Our blond sunshine would be out of school from the end of April through the remainder of the school year. In addition to being extremely apprehensive for Emily, I was deeply concerned about the other students. I had to explain her absence and clarified that Emily needed an operation on her face to help her feel more comfortable when speaking and sleeping. I was asked many logical questions. "Did it hurt?" "Can she speak?" "Will she come back?"
Emily's hospital conduct further illustrated her exceptional bravery. Her parents related how she walked into the hospital wheeling her pink carry-on filled with special photographs, letters, stuffed animals, and toys. She told her father, "I do not want you to carry me into the operating room." She explained to the attending nurse that she did not want any medicine and didn't want to wear the blue operating room cap or change into hospital clothes. She was not made to do any of those things while awake. Emily walked into the operating room for the seventeenth time on her own two feet! Her dad told me how he felt humbled when he saw the severe problems of other children in that hospital.
It was inevitable that some of the children would see Emily after her operation, before she came to school for a visit. I had to explain that she was wearing something that looked like a catcher's mask on her face. We discussed the casts one of the boys had on his legs following surgery during this same school year. They remembered that his legs needed to be protected and realized Emily's face needed protection as well. The mask was purple and Emily's doctors and family referred to it as Purple. Some of the children viewed Emily in her mom's car picking up her brother from school. Some visited her at home. Each child who saw her came to school elated and greeted the class by shouting, "I saw Emily!" My concerns for her classmates were allayed as not one child who had seen her mentioned Purple. And yes, my first-graders had the ability to perceive the heart of Emily and I feel certain that she will continue to use her remarkable strength of character to surmount the struggles she has yet to face.
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