The smile that hides.......

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 !!!!!

Show time again

We had a nice Easter, with the house still covered in chocolate. Once again we made the trip to Sydney Royal Easter Show, this time we had no animals in show, which made it an easier trip.
We stayed the night before, close to the show and arrived at the Show by 9am, went straight to the rides so we didn't have to hear about when we were going there all day. They chose the Super Slide and Missy went on the Roller Coaster, while H-HO chose the slower log ride.
Next we had to check out the Poultry, where we caught up with fellow poultry fanciers. A quick walk thru the sheep pavilion to the Big Top Amphitheatre to grab a seat for the circus show and Alvin the Chipmunk show.
Off to grab some food and we took a seat for Speckle Park Cattle judging, as the afternoon creeped on, the showbag questions started. We headed that direction admiring the art work and regional fruit & veg displays. The showbag pavilion appeared in front of us as we took a deep breath and headed into the pit of tired and cranky kids and parents, doing laps of the pavilion trying to decide on showbags. H-Ho held on tight to Missy's chair and we pushed our way- ever so politely thru the crowd. Our kids had pre-decided on their showbag, so it was pretty painless for us really. We left the show at 7pm with two tired kids but in good spirits ready for the long drive home arriving at 11pm.