It’s a family thing – a Sibling’s Perspective of TM
As I was contemplating what to write for this post, I found myself going back in time to when I was just a kid myself. I distinctly remember being in the fourth-grade & a point my teacher was trying to make to our class. I have no idea why this memory, of all things, sticks with me so vividly. I believe it was a science lesson & she started it off by placing a relatively small dot on a very clean chalkboard. She then turned around to the class and said, “Tell me what you see.”
The answers from my classmates varied: “chalk,” “a dot,” “a spot on the chalkboard,” “a circle on the chalkboard”…she started getting frustrated. “No. When you look here…” as she tapped rather forcefully on that spot she made before, “describe to me what you see.” I was stumped, I admit it…what did she want out of us? Where was she going with this? It was a spot she made on the chalkboard, how descriptive could we get?
One classmate spoke up…”I see a spot. I see a chalkboard & a teacher. I see windows, desks & people in the room.” “BINGO!” She was so happy someone finally figured out where she was going with her lesson! She was trying to explain that even though we stare at one point, our peripheral vision still allows us to see what is surrounding that single point.
Now…you’re probably wondering where I am going with this? I often find myself, staring at a single point – this diagnosis that has been given to my child. I stare at it and try to figure it out & sometimes, I have to admit, it can be all that I “see”. It’s not all that I see in him, certainly not, but becomes a focus & is oh, so time-consuming. I do my absolute best as a mom blessed with three children to be sure that I don’t lose sight of what else I should be paying attention to around me. Much like that single spot of chalk I saw on the board, the diagnosis of TM isn’t only what I see.
I was curious about how my 13-year-old daughter felt about TM and wanted to know if I am doing my job as a mom for each of my children. I know this diagnosis is not something that only affects my youngest child but it affects our entire family…it’s constantly in everyone’s peripheral vision. I asked my daughter if she would be willing to share what TM meant to her and how it has affected her as a sibling. She was gracious enough to write down for me how she sees this “spot” on our family’s chalkboard! If you have a teenage daughter you probably know that this request may have not been received so well! (A quick nod & huge thank you to my sweet girl ~ we love you!!)
The way Moms See It…it’s not just about one child, one diagnosis, one event… it affects SO much more… Here you have it from my daughter’s point-of-view:
Transverse Myelitis are two words I didn’t even know existed until December 2007, on a Thursday, when my four month old brother, was diagnosed with Transverse Myelitis. I remember a few years ago, my mom and I were in the mall and a little boy was in a wheelchair with a service dog standing by his side. I was so confused because I knew there were no dogs or pets allowed in the mall. My mom asked the boy’s mother to explain the importance of the dog and why having him was necessary. I still didn’t really understand much other than that he needed that dog! Now it all makes sense.
The months my brother was in the hospital were extremely stressful for my parents and it was difficult for me to see them so tired and exhausted. My other younger brother and I had to stay at our grandparents’ houses many times. That was also a struggle being away from my parents so long. But now, my brother is a happy, vibrant little guy who loves being outside and playing with matchbox cars. Even though he has come a long way since he first fell ill, that doesn’t mean the constant doctors appointments, therapy and specialist visits have lessened. He still has to go to many doctors’ appointments and therapy sessions and that means my other brother and I sometimes do, too. I don’t always enjoy tagging along on these excursions because sometimes it means watching him struggle to do something that I have absolutely no problem doing. Not only that, but I quite frankly hate waiting in a hospital for an hour or possibly longer! It also hurts when I see my brother upset because he can’t do the same physical activities as his friends at school without getting hurt because he falls or he gets exhausted too quickly. This not only affects him and his daily life, but it affects me too, just not in the same exact way. It affects me because sometimes my mom and dad have to pay extra special attention to him and they don’t always have time to do certain things with me. Or when I see him in therapy, tired and ready to be finished, I wish I could help or do the work for him.
In 2010, I found a passion for running. After my first 5k, I discovered that running came naturally and was easy for me but for my baby brother, it never would. So after some thinking, I made a commitment to him and myself that I would dedicate my physical ability to run to him, and I would do my absolute best while doing it. I am looking forward to participating in SRNA Michigan Walk-Run-N- Roll event in Holland on October 5, 2013, because it’s something I love to do and I will be able to do this alongside by brother and my family. I can’t wait to meet other families that have experienced this and to show other people that Transverse Myelitis does have a huge impact on families.
~ Maggie and her mom, Rebecca Whitney
