Thursday, June 14, 2012

Weekend Getaway & News Update

It has been quite eventful days in my household. As usual, the combination of many unfortunate events unfolds... but somehow the string of bad things end up in a big good bang! Goes to show that although you suffer a little and get unnerved a little there are also moments to enjoy a little. Nothing is simple in my life.

The past two weeks have been filled with action and drama, mainly thanks to my service providers not providing! Oh, I must confess that it has been quite entertaining listening from my bedroom to the roars coming from Mommy's cage... erm, office. Turns out that after waiting for the outcome of submissions to my insurance about my new stander and new therapies, the paperwork got lost in the Matrix. No, literally... You know that point in cyberspace where someone send a fax and the other person never gets it... but apparently someone did get it because the sender gets a receipt? Yup, that single point. So... after waiting the mandatory weeks to know if things are flowing smoothly, Mommy gets to find nothing happened... Again. May I repeat the again? This has been the story for almost three months. Long story short, now things are supposed to be "back on track". But all of this won't make anyone from the insurance people bent their ways... We have to wait for an answer in two weeks.

Never-ending story. If I were a princess in need of saving the dragon would have already have me for breakfast! To be fair, Mommy is not blaming just insurance... When she worked in "corporate America" she would call the receiver alerting him that she would send a fax, then she would send a fax, and then she would call to make sure it was received. All these people on whom I depend for my health and well being do not confirm things making a simple phone call... or sending a simple email. What a crappy service! Don't they know that by being a bit more proactive they would get their jobs done in the first try, everyone would be happy, and there would be peace in Earth? (Sigh) And so, paperwork gets lost, people get angry, and the Dark Side gets new recruits. We will see if in the end I can finally get a new stander, hippotherapy and aquatic therapy. Now I also need another power wheelchair test, to see if fiber-optics is best than mini-joystick for me to control it... I foresee that Santa may bring me a huge gift if the report says I'm nice.

Just a comment: It may not be so, but I really feel that I am not that important to these people who are supposed to help me get the tools I need. I wonder, if I were their daughter... would they move faster and more efficiently?


I got a notice at the beginning of June that I won a vacation getaway for my family from the Joseph Lillo SMA Foundation for Children! Yup, that's right, it will be a weekend at Virginia Beach, with all expenses paid including food, gas and doughnuts! Now how cool is that? I got very excited about this! I'll get to see the sea in person! The last time that I was near a beach I was 3 months old. And I was lucky, my little sister has never seen a beach at all! Mommy keeps dreaming of lighthouses and salty air... Daddy just wants to see us happy. And happy is an understatement! Forcefully living between four walls is not exactly fun. We make-believe we are back home in our tropical little island, camping out under a coconut tree and enjoying the sunset... Although imagination is cool, the real things beats it all!

Last Friday, June 8th I got a visit from some members of the foundation. Just so you know, this is a non-profit organization committed to raising awareness, and raising money for research and medical equipment for families affected by SMA and other disorders. Little Joseph earned his angel wings when he was just three months old because of SMA, and through this foundation his legacy of hope keeps on thanks to all who loved him dearly. I met Joseph's mom, Rose Ann (director and founder), and Monica (event coordinator) and Angelo (trustee). When they arrived I was quite asleep, but soon I woke up to witness what the fuss what about... Imagine my surprise when I realized that it all was about me! It was almost as if I had witnessed the Three Kings bearing gifts! They brought two big baskets filled with beach goodies: Towels, sun lotion, toys, goggles, shades, toys, bubbles, inflatable stuff, hats... Did I mentioned toys? So many things for Kali and me! We are going to have a blast!

I explored it all in depth after they were gone. Kali definitively started the party playing with all the sand molds. After opening everything, and realizing what I am to experience soon, I even requested my old Little Mermaid doll! Yeah, I was kinda avoiding her (her songs bear a very personal message for me...) but I think she may be back to stay, I can't deny I love her. Of course that love is enough for Pocahontas and Mulan too. There is enough of me for you all! We got a little taste of what things will be under the sun right here under our roof... Saturday and Sunday were pool time at my home! Gotta admit I love it, even if Kali annoys me so much with her happy squeals. Nothing beats being with Mommy and Daddy. Thank you so much, Joseph, for bringing more friends into my life, and for smiling upon us and helping us make more memories!

This week I ask that You give big hugs to Gracie and Hayden, your new angels in Heaven. Give courage and peace to their families so they can keep going until they all meet again. Keep my friends and family safe and keep carrying me in Your hands so I am able to do as You want me to do. Let me be a messenger of Your love and Your peace, let me change lives the same as I have been changed by others. I am so humbled by all the blessings that You bring into my life, and grateful beyond life itself! Thank you for allowing me to experience all these things, the good that makes me want to keep going on and the bad that makes me appreciate the good even more. Thank you for always surrounding me with people who love me and help me. I look forward to all the miracles that You bring into my life everyday, at all times. Let me gain wisdom, insight, and joy from it all. Amen.

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