First Day of Middle School – Two Perspectives By Marcy White September 26, 2014
Nathan – First Day of Middle School – Morning Routine
On the first day of Middle School, Nathan rolls out of bed, brushes his teeth and puts on the new shirt and pants. He picks up his backpack, filled last night, with all the school supplies he needs. He walks downstairs and enters the kitchen, sitting down at the table as his mother places a plate of pancakes in front of him.
While he’s eating, his mom finishes packing his lunch and asks her son what snacks he would like for recess. Nathan doesn’t eat as many pancakes as usual, saying that his stomach feels funny. His mom thinks it’s probably because he’s nervous for his first day at the new school. She doesn’t tell him that hers feels funny too because she’s worried for him and hopes he has a great day.
Jacob – First Day of Middle School – Morning Routine
Meanwhile at Jacob’s house, Jacob opens his eyes and the first thing he sees is his night nurse. She smiles at him as he slowly awakens and cheerily reminds him that he has to get ready for his first day of Middle School. Jacob listens to his nurse talk about her first day at a new school as she lifts him out of bed and carries him into the bathroom. As she places him on the changing table, she adjusts the pillow under his head so that he is comfortable because he can’t move by himself.
She gently removes his pajamas and starts dressing him in the clothes his mom laid out the night before. She stops periodically and turns him on his side so that he can breathe freely – lying on his back makes it hard for Jacob to expand his lungs because of his rapidly progressing scoliosis. As soon as the dressing is complete, the nurse lifts Jacob and places him in his wheelchair.
While the nurse brushes his teeth and washes his face, Jacob starts thinking about school. His pulse races and the nurse can see the numbers climbing each time she glances at the oxygen saturation monitor on his right index finger. The nurse administers the final dose of morning medication through the tube in his stomach, removes the extension tube and closes his g-tube. It is the only way Jacob receives food, water and medication because he cannot swallow. She places the saturation monitor in its case, and attaches it to the wheelchair so it is readily available in case it’s needed during the day.
Jacob wishes he could tell someone that he doesn’t want to go to school, that he wants to stay home with people he knows instead of going to a new place without his friends from last year. But, he can’t. His vocal cords are paralyzed and he is unable speak.
Nathan – First Day of Middle School – Getting to School
At 8am, Nathan and his mom leave their house and begin the short walk to school. On the way, they meet up with Evan and his mom. Evan and Nathan were at the same school last year and are surprised to find out they will be together again.
As they near the school, the boys say good-bye to their moms and enter the building together. They are not in the same class, but agree to meet up in the yard at recess.
Jacob – First Day of Middle School – Getting to School
At 7:45am the night nurse leaves Jacob’s home and his mother takes over his care. She, too, talks about school and shows him the three bags that will be accompanying him. She points to the new big black backpack that is filled with his medical supplies including syringes, extra tubing for his feeding pump, a change of clothes, medication, a pill crusher and measuring bottles. A case of liquid food is by the door, along with his feeding pump.
At 8am the nurse who will be by Jacob’s side until he returns home from school rings the doorbell and announces that Jacob’s bus (it’s really a wheelchair-accessible van) has arrived. She is the same nurse as last year and Jacob smiles when he sees her.
Jacob’s mom wheels Jacob out of the house, up the driveway and into the van. As the bus driver ensures that all the safety hooks are engaged and Jacob’s wheelchair is fastened in place, Jacob’s mom and nurse place the bags and food in the van to be unpacked at their destination.
Jacob’s mom leans down to give her son a kiss on his cheek and waits for his usual smile. It doesn’t come today. Her insides lurch, she knows her son is scared. She is scared for him but understands that he doesn’t want his mommy to come to school with him. He is not a baby, after all. She tries to reassure him that he will have a good day and reminds the nurse to take good care of him.
The van door is closed and they drive away.
Nathan – First Day of Middle School – Butterflies
Nathan is ushered up to the second floor, down the hall, around the corner and into his new classroom. This school is larger than his previous one, the kids are older, bigger and louder. They all seem to know each other because they are standing in groups talking to each other, laughing and catching up with what they’ve been doing over the summer months.
Nathan is scared and the butterflies in his stomach seem to be growing exponentially as each new face enters the class. The classroom is larger than his previous one, and there are so many desks arranged in the room. He wonders what he can do to get out of here. He thinks he will never fit in and make friends.
He wants to fade into the background and observe from a distance, hoping nobody will notice him. He thinks the chances are pretty good for this as everyone seems to be too busy to care about the new kid. He takes a deep breath and reminds himself that he will probably make a new friend within the next couple of weeks, and that Evan will be waiting for him in the playground at recess.
Jacob – First Day of Middle School – Butterflies
Jacob and the nurse arrive at school. As soon as the bus driver wheels Jacob out of the van, a petite woman with a big smile on her face rushes over to him and welcomes him. Jacob and the nurse are directed into the building and wait for the elevator. At the second floor, they are ushered out, down the hall, around the corner and into the classroom. Everything is happening so quickly, Jacob doesn’t even have a chance to process what’s going on.
Although Jacob can’t talk, he understands the conversations around him and he certainly notices all the eyes trained on him. His back starts to hurt but he tries not to show his discomfort around all these new faces. He can’t hide, he can’t use his hands to shield his face and he can’t slink into a corner in the back of the room.
Jacob hopes, in vain, that someone will wheel him out of the room, around the corner, down the hall and back into the safety of somewhere familiar. He wants to fade into the background and observe from a distance, hoping that nobody will notice him. He realizes though, that the chances of his wish coming true are pretty slim.
Marcy White BSc, MSW, MBA, enjoyed a career in the investment industry until her son, Jacob was born in 2002. Her academic degrees did not prepare her for caring for Jacob, who was born with Pelizaeus-Merzbacher disease (PMD). Since Jacob’s diagnosis at 10-months-old, Marcy has become an advocate for her son and furthering PMD research to help find a cure. Marcy has published many articles about Jacob that have appeared in such publications as the Globe and Mail, Canadian Jewish News and Exceptional Parent. She recently published her first book: The Boy Who Can: The Jacob Trossman Story. She co-founded curepmd.com to educate people about PMD and fund research into finding a treatment. Marcy lives in Toronto with her husband, Andrew, and their three children, Jacob, Sierra and Jamie.
This post was originally published on hermagazine.ca