Monday, December 12, 2011

Xmas Breezes

Christmas is here, and you can feel the ambience shifting from hurried gloomy to laughing nothings and glee. Not that I am complaining... in the middle of so much chaos and daily mayhem is good to see that something can be strong enough to make people lighten up at least for a while.

Last week I had my synagis shot and pneumonia shot. Hopefully that will help me avoid the dreaded RSV and sicknesses that go along with Winter season for so many kids... and that can be fatal to kids with my condition. Some of my peers have been sending many messages regarding how to ward off these, prevention being the number one concern among the SMA community. It is something not to be taken lightly... a simple cold can kill us. I understand how serious things are, and so I try my best to stay away from the cooties. By now I only have two constant nurses, and my three constant therapists. All know the rigors of the privilege to be in my presence!

I am happy to announce that I finally have an official OT from the Department of Education. She did the meet and greet on Friday and we really expect big things out of her as she comes in blooming with ideas and perspectives. If this works out I will really be able to say I have the perfect team that will make me soar. Right now I have excellence at my side: my teacher, my PT, and my SLP. I'm looking forward to fun and even more growth. I am also happy to announce that I was finally approved a new headrest and collar. After almost two years of so much struggle, I hope that before the end of the year I can finally have the proper upper support that I need. Mommy got the call on Thursday afternoon. One battle down... Many others on the list, but at least I'll take a moment to do a happy dance over a sombrero. Yay!

During the past week I've also been visited by some new friends from a nearby church. The leading pastor passed by as they held an activity on Saturday and they were inviting families from the community. So, they knocked in our door and then they met me. Last Saturday they passed by with one of the activity's photographers so I could be part of the whole thing from home. I really appreciated all the attention, and all the good vibes. So many people pray for me! And so many people help me, one way or another... God keeps on holding me tight, looking out for me and my family.

Today I did not have class so I enjoyed the day revisiting Nemo and Ariel. I'm happy and I am wary of all the special things happening around me. Mommy keeps on being busy writing and calling people, and Daddy keeps on with orientations and straightening out paperwork. I don't understand much of what they do, but I now it gets tough and all they do they do for my sister Kali and for me. And as long as we are all together, everything is just fine.

So... With pasteles (my RT brought some for Mommy and Daddy), some pumpkin creations and plenty of Christmas music from my little island (Mommy is a sucker for the Tuna de Cayey group) I can definitively say I look forward to a week of adventure, preparation and expectation for Santa's visit, New Year's eve, and then for the Three Kings day. One of the best things of being Puertorrican is that our Christmas last until mid January! We always have so many reasons to celebrate! Me, I celebrate because I am alive and I know my dreams will come true... Mommy always tells me there's nothing I can't do. And I know she tells the truth. I have faith and belief on my side, and the right people around me.

GOD: I think always of all the kids that I know that are in the hospital, fighting for their lives! Thank you for allowing Mary to go back home, please help MJ so she can finally beat up all her cooties, and help fix Gabbie's heart so it gets strong and she can go home too. Thanks for making Ally and Stella better. Today I also ask You to give baby Sophie big kisses for me, so she keeps smiling up there in heaven. Thank you for surrounding me with love, for protecting me and my family, and for always making Your presence known in so many ways. Amen.

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