Every morning missy awakes with a smile ready to face the day whatever it may bring. She eagerly drives into school and loves to find her friends, loves to do her school work, loves to interact, loves and must have a go at everything her peers are doing. Missy smiles at almost everyone and everything, her smile can light up your day, the room, her eyes squint and happy lines appear over her face. It’s a smile that engages people and allows conversation to flow with the help of a communication device.
It’s only those very close to her who see the daily frustration of having a body that doesn’t do as it’s told. Every single movement takes such concentration and even with total concentration on controlling her muscles; still so many things are extremely difficult. She has many tears about the restrictions that her muscles put on her ability for independence, for communication, for feeding, for school work, for handwriting amongst other things.
Missy will grit her teeth, stomp her feet and try to express her anger and frustration, as a parent it’s the hardest thing to watch, knowing there is little I can do but to offer alternate ways of doing things and validate her feelings are understandable.
But really not many people can truly empathize with Missy’s feelings of frustration of having a body that wants to inhibit your determination, motivation, intelligence and communication.
I can’t remember ever doing a negative post on this blog, so I will switch to the positive side. Missy’s will to be included in everything drives us to concentrate on equipment and areas we can change or raise awareness about. Physical Access is a huge area that impacts us all as a family, if we can’t get thru the front door, we don’t shop there. I work with our local Council on an Access Advisory Committee and try to give some real life experiences and knowledge but it’s a long road. Missy has enough frustrations in her life without arriving to an event or shop to find it has steps or she can’t fit inside or turn around. STAIRS SUCK, RAMP IT UP !!!!!