In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Monday, August 31, 2009
AT AUGUST's END: WHEELCHAIR, STANDER, and PAINT
Yup, that sums up who I am... Colorful, hopeful, fabulous, wonderful diva! Mommy spent some hours beading me up, and I simply love it. I think pink is my color, no matter what some people say. Leave red to Mommy and purple to my wacky Godfather, I am pink. Yup, a girly girl that can be quite a tough cookie!
Painting is definitively not my strong trait (as you will see below), but Mommy helps with it. She says I am a living masterpiece. Can't blame her. I am a piece of work so many times! :P I'm glad I get all the attention I want. Just don't think I am spoiled. I earn all I get. I'm working hard everyday, trying to get my ABC's straight, getting the differences between animals and veggies, and being good with all who are good to me. I just wish I could watch my favorite show more often, lately I'm stuck with books, books and more books... Hey, I know I just turned 2 and now I am a big kid with many responsibilities... but come on!
All in all, I get everything I need and everything I want, and most important than anything else is that I get all the love in the world! I live in beauty inside out, and I wouldn't have it any other way. I wish with all my heart that all other kids like me walk and live in true beauty as I do. And I pray for this wish every night.
On FRIDAY 28 I performed my 1st PAINTING EXPERIMENT! Ok, I have to admit this was interesting... and different. Mommy loaded my hands with orange, purple and green, and then I was able to set free giving all I had to give in matters of my artistic side. My personal opinion: Mommy, keep this messy thing you call art to yourself. I prefer my art... cleaner... digested... on the screen of my dvd. After total failure to amuse me, I went out of the room into the computer area. To my surprise my clicker was attached to the mouse, and daddy prepared a game on the computer, just for me. I loved this! Now we are talking! I wanted to click everywhere so badly! I was engaged playing Peekaboo, then with the train... Wow! Colors and sounds! Loved it. Thanks Jana for the KneeBouncers link! Awesome games! This got my attention for almost an hour, then Mommy changed things to PinkyDinkyDoo and I fall asleep. But hey, cannot say that I didn't get something different!
Today I had my last fitting appointment for my STANDER and my WHEELCHAIR! It all rocked! You see me there, standing? That was awesome! Of course, I got as straight as I could, and then waited for some more... well... action? Nothing more, just me standing there looking pretty... As usual. Then I got in my new set of wheels! Loved the chair! It compliments my hairdo, and is simply diva-like. I hope that now I can finally get out to more than just appointments. You know... Night at the opera, Broadway shows, anything that keeps my status as a social butterfly... I am so happy I'll finally be able to do things outside of my bed! More chances to learn and to grow even faster. I'm a bright curious big girl now, with the right tools to do anything! Lookout world!
So the two weeks after my birthday have been quite eventful... Things are running fast. After all this I hope therapies can get better, and that some sort of transportation can be sorted out so we go out. I feel this is a new phase that will help us all to have FREEDOM! Mommy and Daddy can now focus on getting a better apartment and on getting a van so I can go places... Yes, in the end it is all about me. So what. They love it as much as I do.
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