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 !!!!!
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You should be proud of Missy and yourself for finding ways to do everything. We are lucky our kids are so outgoing and we are changing the world for them, but the heartache of watching your child struggle to do what everyone else takes for granted - or denied it because of stairs or attitudes - never stops hurting. Just as well mums never give up! xx
ReplyDeleteWonderfully written and expressed. I love the stairs slogan!
ReplyDeleteI think you guys are all amazing....This post had me in tears..... but in at the same time made me think how inspirational you all are, and how wonderful Missy is..... her smile lights up my day everyday, She is incredible in the way that although she encounters lots of frustration her smile seems to take priority 95% of the time......she is absolutely amazing....
ReplyDeleteLove from her teachers aide and life long friend Miss H