Monday, monday.....as the song goes. I really like Mondays because it is the start of a new week. Before I became a retiree, I made it a practice to think of the previous week at work as over and done with no matter what happened. Monday was always a fresh start. I worked at various schools and with children of all ages. The toughest, by far, was middle school. The kids were like aliens for the most part, halfway between childhood and what they thought of as adulthood. The young teens were, without a doubt, very challenging. Thankfully, they grow out of that stage and become good students in high school. I was lucky enough to work in the Special Needs Department at a middle school in a somewhat smaller school district. Working with children with disabilities was interesting to say the least. Some had visible disabilities, but most had learning disabilities which were indiscernible from the rest of the student body. I loved those kids. They didn't always get it, but were some of the sweetest people I have ever known. Most of them gave 110% every day as they tried to learn with a modified curriculum designed specifically for them.
My favorite student of all time was a girl named Brynne, who had Duchennes Muscular Dystrophy. Her brain functioned perfectly....it was her body that could not move as freely as does yours or mine. I remember the meeting our department had the summer before her entrance into middle school where we learned of her disability. We were told her muscles were so weak she found it difficult to raise her arms or hands. She was, of course, in a wheelchair and could hold her head up fairly well, but with such weak muscles, found it hard to complete the most simple functions. Her chair was motorized and she only had to wrap her beautiful small hand around the joystick to move it in any direction. We helped her with the functions she could not preform for herself. Lifting her out of her wheelchair and onto the toilet, then off and back into her wheelchair was part of my job for the two years she attended middle school. I was one of the lifters, but in time became the only lifter. I'm not sure she ever told her mother, but she told me she wanted to do the lifting because I had big, soft "pillows" on my chest that supported her head! We still laugh at that one even though the "pillows" have begun to deflate and make their way down towards the floor.
Brynne was so very smart...so caring of our time and feelings as we helped her function at school, never wanting to burden us unnecessarily. On one occasion, each of the school staff brought a baby picture to post by the office so the kids could try and match the baby picture to the teacher. I brought a cute picture of myself with my twin and older sister. Brynne asked me about my twin, Bill, at which point my eyes gave way to the sadness in my heart. I told her about him, that he had been very sick and had passed away that past summer. It was such a shock to me and I was still trying to process it. She slowly positioned her hand over mine and told me she was sorry and that he was now whole in heaven. No one ever told her she would not live a long life, but she knew her time on earth was short. Her parents told her that in heaven you could run and play, never needing a wheelchair or someone to help with simple tasks. I know it gave her pleasure to think of those times to come and she never seemed afraid of her ending on earth.
Her older brother had the same disease and their parents never coddled them, always letting them live life as much and to the fullest. They were allowed to "walk" home from school, which was quite a distance, as long as they had friends walk with them. I remember seeing them in their wheelchairs speeding down the sidewalk, laughing, while their friends ran to keep up. They were always laughing, never letting their medical condition stop them from having a fun-filled childhood with their friends. When Brynne graduated from eighth grade and moved on to high school, I went with her. I worked with her for about a year and then moved on to another job. A short time after that she was unable to attend school because her medical needs became too great. She could no longer hold her head up and full time nurses were now needed. A teacher came to her house to teach her and she continued to study and work hard to earn her diploma. I, along with Anne, her other assistant, visited her nearly every week at home to see how she was doing and to keep her informed of the goings on around the school. If you asked her what she wanted to be when she was older she would tell you a hand model. She did have beautiful, soft, perfect hands.....nails always well done by her mom. In February of what would have been her senior year, she passed peacefully from us. I was not prepared for that, mainly because I believed she would live longer while intellectually knowing it was not going to happen. Her mother made sure I heard the news from the family before they called the school district to let them know of her death. Brynne died suddenly at home that morning surrounded by her loving family. She had no complaints when she awoke that morning and went about her daily routine. The nurse told me Brynne was reading a book when she closed her eyes, took a deep breath, exhaled and did not breathe again. The most important muscle in her body suddenly stopped. She was gone that fast, hopefully without pain or suffering.
My best friend and I attended the funeral with what seems like hundreds of people who either knew her or her family. I'll never forget the sight of Brynne's mother and father, each taking a turn at the lectern speaking in such calm, soft tones about the love and happiness Brynne had brought them in those 17 short years. Her dad held a small, but well worn teddy bear he had given Brynne as a small child. On one of her many troubled nights of sleeplessness she had asked him, made him promise, to take care of the teddy bear for her and never throw it out. He held that teddy bear tightly to his chest as he spoke of his beautiful daughter, raising it up towards heaven promising to take care of and love it the rest of his life as he had loved her. That was the only time I heard his strong voice waver and tears fill his sorrowful eyes. It was not the only time I wept that day. Many years have passed since that day in February, but I still think of Brynne, her family and the indomitable spirit they all exhibited.
Brynne's brother, Rich, passed away last August, having lived much longer than the doctors had predicted. He outlived her by 8 years, but I know he missed her every day of those eight years. They are buried next to one another in a beautiful setting in a very large cemetery. I visited the site a few months after Rich's death to see them, talk to them, let them know I will always remember them and will visit them every year to lay a flower or two. The impact and effect they had on me and my life while they lived is still felt in my heart today. Brynne and Richie were beautiful, intelligent, loving children/teens/people whose strength, spirit and fortitude was something to behold and hold close to your heart. I did and always will.
