James and I have always described Kiley as the most unpredictable child. For example, when she was really little she would always give any male that wasnt her dad the cold shoulder, yet she always preferred to play with boys her age and would barely give any other girls the time of day. I would have described her as a tomboy, but at the same time shes always loved to wear girly pink outfits with sparkles. She also always had a tendency to act quiet and shy in public situations, yet almost everyone who knows her will attest to the fact that she has a great set of lungs on her and its hard to picture her being quiet, (and/or still!). Another example of her un-predictability is when she randomly decided one day she wanted peas with her scrambled eggs for breakfast, (and ate them all up), and then a week later she passed on cookies for desert and asked if she could have peas instead, and then continued to eat at least 2 servings if them!?! I can honestly say that I did not see that coming. Seriously, even yesterday I was surprised when I took her to see a 3D kids movie in the theatre, and when it ended she began crying because she was worried about the theatre running out of electricity and no one else being able to see the movie.... Im bringing this up because it dawned on me today that this inability to predict her behavior isnt such a problem after all, and that instead turns out to be an amazing gift. Luckily she continues to surprise me everyday, and almost everyone else who knows her. Today at the clinic her Oncologist assumed she would make her counts and be admitted for her next round of chemo based on her appearance and attitude, but was shocked to see that her actual counts were too low and we were sent home! (We dont have to go back to the hospital until next Tuesday, so we will definitely be making the most of our time home!!) Im not saying that having low counts is a blessing, but her ability to live every day according to her own set of rules is. This realization came today after I read a reputable article last night on her specific cancer that quoted, >70% die from their cancer even with the most advanced multimodal therapies, and that, Similarly, those who do survive childhood RMS face a lifetime of significant treatment-related effects including profound functional and cosmetic deficits, organ toxicities, and second cancers (Punyko et al. 2005). While that is not what any parent wants to read about their childs prognosis, I know her outcome is not so black and white. If no one can accurately predict Kileys behavior, (and Ive had some of the best behavior analysts try!), then how could anyone be able to accurately predict Kileys outcome?? They cant. So at the end of the day, I just wanted to say that No matter what the statistics say, I believe that Kiley isnt just like everyone else, and she is going to surprise us all! Thanks for listening :)
Posted on: Thu, 13 Nov 2014 00:56:29 +0000
Trending Topics
Recently Viewed Topics
© 2015