In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Thursday, May 3, 2012
SPRING FUN
The ending week of April brought in quiet blissful days. I love it when I'm able to be unbundled, reminds me of how the climate is back home. I spent some time just breezing, some time trialing a nice stander, and plenty of time building my double!
Hanging out in the living room, I am able to actually enjoy some quiet TV time when my little sister takes a napping break. Usually this becomes the napping house where everyone is sleeping... but I've been treated to playlists of vintage cartoons and concepts... Feeling retro!
I love this retro time. Mommy hangs out with me and Daddy fusses all around me bringing my food, suctioning, repositioning me... Yes, I love the attention. Although Mommy is driving me nuts taking so many pictures! Stop it! Can't see anything! Watch that flash!
I feel so comfy that a nap becomes mandatory! What can I say... At least I make sleeping look awesome. Besides, it is the best way to escape Mommy's childhood video selections (Cepillín anyone?). The worst part is that I do know that "En un bosque de la china" song... and the Pinocho song that actually can be quite unnerving because of the graphic descriptions of he poor wooden toy's wounds!
Yeah... That Pinocho song gives eough imagery to wake up anyone! Bah, is not like I had plans for a long sleep... I have more important things to do... like watching Wonder Pets, Mulan, and figuring out which sequins I will use on my next project...
So... I've been quite engaged with my latest school project. My teacher had the excellent idea of doing a realistic piece of art. What I did not know is that I was going to be the model! He took out a ruler and measured me: Eyes, nose, face, arms, legs... He then put together two big pieces of paper, and then I helped him outline me! Wow! This turned out to be something quite far out!
I just love how it captures my pigtails! And the glitter and gold! And the stars! I insisted that my hair had to be green (yes, I was going through a green phase thanks to my obsession with St. Patrick's day... bear with me). I love how we used colored stars to mimic my jewelry, and then how little by little my dress took shape! The detailing was impeccable!
And most importantly, it really looks like me! I made those crinkled flowers, and helped with the sequins around my dress. See those snazzy shoes? They definitively look very real! This is just what I would wear any given day, to chill around the house. Way cool. My life-like double! From head to toe!
Hard work pays off. Mommy always tells me so, and she is so right! I love how my project turned out. I am so proud of myself! Next project will be quite lovely. Last year it was all about bees, so this year the "in" crowd is made of gorgeous butterflies. Stay tuned for the outcome!
Mommy planned a trip to Insectropolis for Saturday, but we all woke up late and the day was too chilly and windy. So, we had a big movie marathon... serious lazy family fun. Gotta love that. Mommy did my hair, Kali watched TV while resting all over Mommy, and Daddy appeared with food. Perfect!
On Sunday I woke up in a foul mood, and although my parental units tried to "make contact", all I wanted to do was to be left alone... I played chasing the bunny in my Tobii, and then went on to play with the Mr. Potato Head... I wanted to play with Kai-Lan, but then decided that I was also in no mood for moving my thumbs... I know, I can be such a pain sometimes... When I get in some of my special moods people really have to just let me unwind on my own. I also get tired of things, you know?
Luckily I snap out of it fast enough. I am not bad, I'm just drawn that way! And so the weekend is gone... Mommy read some of my bedtime prayers, I paid attention, sang my prayers in my head, and off to Channel Z.
On Monday I did not have class. I practiced hard using my Tobii, and then had some fun with Nurse Mashaela. In the afternoon the stander guy passed by to take the demo equipment. I have to say that I love the Bantam stander. It was definitively much better than the Buffalo for me, leaving no marks on my knees and supporting me the right way. I used it everyday from the moment it got here, and I was definitively sad to watch it go... Now I'm crossing fingers so I actually get mine soon. Mommy thinks that maybe for my birthday, and most likely for Thanksgiving... but who knows. Miracles happen everyday.
So... I have high hopes for my Power Wheelchair to be approved and to come soon to me (I need a good chair badly, I can barely fit in my manual wheelchair). I really need the stander too (I can't use mine anymore, I am too tall). And while these wait for action and approval, I am also looking forward to an evaluation to check out the feasibility of me getting hippotherapy and aquatic therapy. Now, I am very nervous about these last two... but excited as well. I am definitively looking forward to this new month!
GOD: Thank you for allowing me to enjoy so many blessings, especially so much peace! I feel you all the time, and I am so happy that you allow me to experience so much! In you I trust and believe, everything that is important and that will help me will come at the right time... not sooner, not later. I know Your hand is over me, and that You oversee my fate. Help Mommy and Daddy so they have the strength and courage to do all they have to do... And God, please give many hugs to little Avery in my name. Extend your hand over her family and give them serenity and acceptance. And to everyone else... grant wisdom, peace, and genuine love. Amen.
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