In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Friday, January 22, 2010
SMOOTH SAILING
This year things are running smooth for me. So far, so good. I still can't believe that I spent all the Holidays at home! That was very, VERY special! Three Kings Day is over by far, and I still keep on getting presents... Sweet! The "viejitos" that Godfather sent me finally arrived, and they are awesome! My favorite is Andrea, the brunette, and I talk to her all the time.
Mommy has been the one going to many medical appointments. The little one is really messing her up! Well, at least I try to keep her spirits up allowing her to play with my Kai-Lan mega bloks. I know she has as much fun as i do putting it all together! I still can't believe I'm gonna be a big sister! Wow! Now I gotta think of how I can be a good role model for the little one... But hey, I have enough time to think and ponder my master plan.
I went to see my pediatrician on Monday. She was quite happy and shocked that nothing has been going on with me. She keeps asking trying to find something wrong with me... It is funny. Well... I am definitively glad that people around me take good care of me, and go to quite some big measures to keep me healthy! And I know this winter was not polite to so many! God keeps on sending me many blessings. I cannot complain.
I've been playing with some boards, and I am still trying to figure out the point of Memory when I cannot command things away with my eyes... At least I'm getting really good at the Yes/No questions, and selecting without hesitation what is what I want from the communication cards. I still have to get the hand of the images that are not so familiar, but at least now everyone is seeing clearly that yes, I do understand and I do have predictable preferences... most of the time. I'm trying to send that point across loud and clear. I really want to be able to pass all tests when the time comes to show the eye gaze people that I mean business!
God: I send out a big prayer for so many that went to You a week ago, and for so many kids that have no shelter or food. Protect them with your Divine presence, and show them mercy and justice. I thank you for healing so many of my friends, making miracles every second of our life. Always craddle us in your arms, granting courage and hope and peace... Amen.
~
Thursday, January 7, 2010
HAPPY THREE KINGS DAY!
Here in NJ they don't celebrate this traditional hispanic custom, but we don't care. Our roots are back in Puerto Rico, and we celebrate as our whole family back at home do, so HAPPY 3Kings Day (besides, that means more goodies for me)!. Nah, I know, I am being just a bit mean, but don't worry I don't cross any boundaries (mommy and daddy would be very mad at me if I did, and you don't tamper with the higher powers!). So... Enough of that (for now).
I am happy to say that I had a blast in my Three-Kings day! It all began as a normal day... the same old routine... even Daddy had to go out for quite a bit... But then at night I heard that I was going to the living rooom after 7:00pm (which is not a common thing). Daddy took me to the sofa, and... Wow! There were so many gifts for me, all under the Christmas tree! Mommy setup her laptop so we could all film the unveiling of all the goodies that the three wise men left for me, in the name of so many people that love me so much! I was thrilled with everything! I can't believe how good life has been to me! I'm so happy, and so grateful, and so lucky to be surrounded by so much love!
Here are the videos of how we celebrated OUR THREE KINGS DAY! Enjoy! :)
DEEDEE's 3KINGS DAY PART 1
DEEDEE's 3KINGS DAY PART 2
DEEDEE's 3KINGS DAY PART 3
So... Gifts were unwrapped, toys were assembled, castles were conquered, and my divafy wardrobe keeps growing... (and a little camel whispered something about some gifts sent from very far away and that will arrive anytime soon!). The year started with a bang, and I am so happy about it! Imagine if the bang is big, I'll have a sibling by the end of Summer! Yup, Mommy's oven is cooking something, and hopefully it will be something as fabulous as me!
Thank you, grannies and godparents and Mommy and Daddy and friends! You all have made me feel very special, and above all I feel your love no matter where you are. It is difficult handling things being so far from all of you, and even if thanks to technology we don't appear so far... it is hard. But soon enough we will all be together, soon enough we shall all laugh and cry and dance under our blessed sunny spot in the Caribbean! I love you all, and I thank God for having you in my life, and for Him granting me so many miracles and blessings each second of my life.
May this year bring on answers and much more hope to SMA families all over the world! And may Shira, Stella, MJ, Emily, and all other friends who have been through health issues through the Winter heal fast, so they go home soon!
~
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