September 24, 2011, kids and families are encouraged to participate in the Worldwide Day of Play to turn off the TV and play outside. If you are like our family, Nickelodeon is one of your family's favorite channels. While I love my family to be active, I somewhat dislike this day. Having a child that is severely disabled makes it hard to do a lot of activities outdoors. So then on the Worldwide Day of Play, Nickelodeon is off air all day long. So then my daughters favorite shows are not on. So while we do try to get active, for Kennedy it is more like an hour long, not a day full of playing outdoors.
A great time playing in the sandbox, another activity which is difficult to do today, as even bending her arm to reach for the sand is difficult.
For our family, it is tough. My daughter has Mitochondrial disease, which at this time has left her immobile. She always had a disability, but when she was younger she could enjoy the outdoors much more (although watch out for the pretty flowers and trees full of leaves, as she was incredibly scared of them thanks to some sensory issues). Until she was six year old she used to be able to crawl around, or walk with a walker. So she did enjoy most activities like other kids her age. She loved playing in the sandbox, swinging, working very hard to get to go down the slide, and even riding a tricycle. Thank goodness for cleaners like Clorox2, as she was always a mess. Crawling around sure makes for a dirty child and dirty clothes....well that is if she didn't wear a hole in the knees from just a day of playing outdoors.
Kennedy loved riding the 4wheeler...today she can not sit up to do this anymore.
Unfortunately today is a different story. Shortly before she turned six, Kennedy started to have seizures. These escalated very quickly and within a few months she also had stroke like episodes which have left her unable to speak, eat, walk and even sit up. Since this time she has had other episodes and tremors that are difficult to control. Now she is unable to hold her head up and a constant tremor even pulls it to the side. It makes doing most activities nearly impossible. She loves to be a spectator though, and loves watching her brother and friends play. As long as they are being rambunctious and making lots of noise we are sure to still get some giggles out of her!
She can still get buried in the leaves!