Charlie

Well, we have another medication, and this kid is really fragile. He’s starting next week in Nancy’s room. I don’t know how they expect us to do all this. It’s too much for you.

Nurse Susie talked across her desk, reading paperwork, at Mollie. Mollie knew she could do whatever it was, and Susie would never wonder again if this particular child was too much work for Mollie. Susie talked like this every time a new kid came in as if she had never heard of a child with severe disabilities, and she was seriously interested in how much of what Mollie could do. Every assistant Susie had had in ten years left as soon as she could, except Mollie. Mollie had been in the Health Office at Melrose Special Education Center for five years. Since Susie fell apart, called Mollie at home, and spread guilt like peanut butter all over Mollie if she took a day off, Mollie had a reputation for terrific attendance. She could pretty well read Susie’s mind by this point which also aggravated Susie. Mollie knew that nothing Susie said or Mollie might think meant anything about any child until the kid actually showed up on the schedule and then in the office. Then the child would be real with a real syndrome, real things to look for, and a real protocol. Mollie said nothing.

Charlie did finally appear some days later with his mother to be examined by Dr. Han. The little boy and his very quiet mother sat on a bench in the main office until Dr. Han rushed in late through the outside door, apologizing. Mollie had put a sign on the office door ordering all and sundry to stay out; the doctor was in. Mollie had cleared off her tiny desk, put her paperwork all over one of the cots and her few personal possessions on various surfaces around the office. Nurse Susie put Charlie’s file, Q tips, 2x2s, a pen, health record forms, a little stainless steel coffin of alcohol swabs, and various other small items on the desk. . Dr. Han tried to look medical, professional, and friendly at Mollie’s desk. She sat in Mollie’s sprung rolling office chair and tried to communicate with Mrs. Segura, Charlie’s mom, who sat on the chair next to Nurse Susie’s desk that the kids sat on when they had a bumped head, bruise, or a pain in the leg that would turn out to be bone cancer.

Dr. Han asked Mrs. Segura how much Charlie weighed at birth, when he walked and talked. She asked mom whether Charlie was born early. Mollie translated because Mrs. Segura only spoke Spanish. Charlie stood quietly between his mother’s legs with his huge head on a kindergartener’s body. When Mollie had finished tube feeding Melissa, she put the syringe and the tube on the try in front of the cot, closed off Melissa’s stoma, peeled off her gloves, stood up, took Melissa’s hands, and helped her down from the cot. Holding Melissa’s hand, she found the bright orange slinky, put it between Charlie’s hands, and showed him how it worked. Charlie bounced the slinky up and down with interest.

Charlie, the doctor is going to look at you to make sure you’re all right to start school. You’ll like this school. Mrs. Levin is really nice, and you’ll have lots of friends. Dr. Han will not hurt you at all. We don’t hurt people in this nurse’s office.

Mollie smiled at Charlie’s mom, took Charlie by the hand and put his hand in Dr. Han’s. She then took Melissa out of the room. After that, Charlie came on the bus with all the other children. His assistant walked him to the kitchen and helped him choose his breakfast. Every morning, he said, Hi, Miss Elena, and Elena said, Hi, Charlie, took his ticket and handed him his box. Like every child in the school, he carried his breakfast to his room following the hallway the same way every day to his room, found his place and ate either the hot breakfast or cold cereal. Charlie fit right in, and he was happy.

Charlie was a bright, affectionate, funny little boy who learned to read very fast. He sounded out the signs on the bulletin board in the health office when he came for his medication. He knew to go see Miss Mollie when the bell rang for the end of recess. Charlie made silly kindergarten jokes while Mollie poured water into a little paper cup and handed it to him. While Mollie carefully counted out his pills from the locked cabinet into another little cup, he balanced his water on his huge head. Look, Miss Mollie, look! Oh, my heavens, you really are silly. Here you go. Charlie always insisted on taking the pills by himself. Mollie held the cup in front of him, and he picked them out one by one, put them in his mouth, and swallowed them with the water he had removed from the top of his head.

Charlie was world famous. He was the only child in the world at that time to have the very rare syndrome that was taking his sight, his hearing and his breathing. Charlie never lay down, even to sleep. He was not permitted to sleep with h is head against the glass on the long ride home at the end of the day like all the other kids. He wore hearing aids. The batteries went out all the time. Then Charlie came to the office; Mollie gave him the new battery, and he replaced it with h is tiny fingers and put it back in his ear. He carefully adjusted it, and when he was satisfied, he went back to class.

Mollie did not bother to look up his syndrome; she never did. The kids were who they were; their various disabilities were part of life; they did not define the children. She always knew what to look for, though and what to do, what special orders each child had, and when to call Nurse Susie. She sometimes looked at Charlie and hoped he could live to be thirty, but she didn’t know. If he lived long enough, he would be deaf and blind, but he could learn Braille and Sign. He could go to college; he could marry; he could live. That was what Melrose school did

His teacher taught Open Court for two hours every day like every other district reading teacher. Charlie would take the same tests; he would probably be a little behind; they would penalize the school for that. They would send a letter to Charlie’s mother, telling her he was behind. Melrose school would not have shown sufficient yearly progress. At least Charlie would be able to see the pictures a little. Most of the kids couldn’t.

Charlie played the lead elf in the Spring Musical. He wore a green felt vest and a green peaked hat and took his turn holding the microphone to sing his solo. The musical got a standing ovation; videos were taken for sale to the parents; Mollie and the historian, Ellie, took pictures to post on bulletin boards and send home to parents. Mollie knew Ellie kept the archives, whatever they were. Mollie was curious; someone always kept the archives, but no one ever seemed to see them. The music teacher got flowers, and awards were given for attendance and most improved. The preschoolers left early to go home.

Charlie’s mother took him home after the production so Mollie did not give him his pills that day. A few days later, the big kids had Culmination and a dance that everybody was invited to. Charlie sat on the floor, ate chips, and covered his face with chocolate cake. Mollie took a picture. He danced with Mollie and Mrs. Levin.

Everyone in the school but the preschoolers waited for the last day, and it finally came. The preschoolers cried; they cried at every change, Winter Break, wind, workmen in the hall. School ended, but Charlie and all the kids would be back in two weeks for summer school. There would be water play on Fridays and trips to the park. The teacher in room 9 would take out the snow cone machine and put it in the lunch pavilion on Fridays at lunch. Some of the rooms would make ice cream in mayonnaise jars.

The first day of summer school, Charlie’s mom called to say he would have to start in a few days. He was in the hospital, but he would be out soon. Nurse Susie and Miss Levin went to see him. He was having a little trouble breathing, but he would be home soon. He was happy to see his teachers and made silly summer school jokes. Mollie waited. There were several children at Melrose with breathing problems who were hospitalized sometimes. Other children were hospitalized for a few days here or there. Their medications were adjusted, or they couldn’t play rough games for a few days. Maybe electrolytes had to be balanced, or they needed a little more chemo. Mollie did not worry.

Then one morning when Mollie came in, Nurse Susie was sitting at her desk crying. Her desk was surrounded by all her friends from the VI program. They were talking quietly. As usual, they ignored Mollie. Mollie immediately knew what had happened. Susie rarely told Mollie anything, but Mollie always pretty much knew. Nearly the whole staff went to Charlie’s funeral, but Mollie stayed in the Health Office for the kids. Charlie’s mom came in, ashen, to pick up his things. She came into the Health office and handed Mollie a box. It was a blue woven runner for her table from Charlie’s mom’s country. Mollie said, I’m so sorry. Mom shook her head.

Nurse Susie retired at Christmas. The new nurse relied on Mollie for the first year because she had never worked in special ed before. Mollie puts the blue runner over her white table cloth for the various holiday meals. She always remembers Charlie then, his white faced mother. Mom had known it was coming; so had Nurse Susie; so had Mollie, sort of.