Monday, October 31, 2011


This year I am channeling Pocahontas, from my head to my toes. Halloween has been great this year! I've got some treats and I didn't have to go out in the snow! Oh yes, there is snow... There was a snow storm two days ago... The gods must be crazy, huh? Anyway, my teacher got me these awesome glow in the dark thinguies and a spooky ghost! Way cool! And my PT got me some Tink and Ariel stuff as gifts. I am having a blast! And as you can see, I am all dressed up as one of the most far-out princesses. Pocahontas is the best! I love her so! And I hear rumors that maybe Daddy will also play chief of the tribe latter on! We'll see what Mommy comes up with for her and the Tiny Terror... It's all about surprises!

These past days have been spooky. I guess we are all into the Halloween vibe... Not! Well, I've been okay, doing what I do... I discovered this video game on Internet and I am so hooked on it! It's called Turtle Crossing, and I have to make a tribal guy cross a river by jumping into turtles... I love it. I've been using my proximity switch to play it, and there has been no frustrations whatsoever (well, a bit while I find the right position but then it is all well). So now I have a balance between movies and games. There are other games, but nothing compare to the tribal guy... I go nuts for the music.

Well, besides that positive fact, the days have been spooky as I've been without my day nurse for the whole past week. No word whatsoever about what's been going on... It just seems that whenever I get attached to someone they vanish. And it seems only Mommy and Daddy and the Tiny Terror are the people immune to that spell. I never get answers, it is just what happens. And it sucks. Plain and simple, it sucks. It is very early in my life to actually try to connect the dots and understand the reasons... Really, too early. I don't understand. I keep getting hurt. People just vanish and don't think at all about how I feel. People don't even say a proper goodbye. I don't even know is it me... Why the people that makes such a big difference in my life are the ones that suddenly go away without a trace?

I am sad. I miss the people I love. Life has never been easy for me... But I know I will go on. Life goes on. There is good, and there is bad... People come in and teach lessons. They think too fast or move too fast and they do not see the important things in life... People no longer take the time to make a real friend. They trust everything that they can touch and that brings them what they want... yet they forget that what they need is mostly invisible to the eyes. I see what is wrong... I see hearts that are damaged, and need much love to recover. But they don't let themselves be healed. I see all this and it makes me sad...

I may not know much, but I know that there is something about the Golden rule that is very true as well as there is something about love and kindness that is priceless. People are fast to live life and judge and make big deals out of nothing... I look into people's eyes and I see enduring pain. I am laying in a bed, unable to move... yet I am free. When I look into people's eyes I see frozen lives, frozen hearts. It is sad. It makes me sad... I reach out but they never see me... And they keep going away.

I go deep into my thoughts, and I find peace. I don't have much, and for many people I don't do much... but I have a high regard of myself. I try to live every day following the Golden rule. I try to make my parents smile, as well as I try to make my teacher smile... my therapists... even my kitty. I hope that I also make God smile.

I am blessed. I am loved by my family and my friends. I know that somehow I make a difference and I will not be forgotten. It hurts whenever someone I love goes away, but I know that somehow I changed them forever. If little me can be a fighter and smile, so can they. That may be the gift that I give them.

So... The past days have been all about me: My feelings, my education, my assistive devices, my needs, my wants, my people, my services... Mommy and Daddy make such big fusses about everything. Life is so simple: Just love. Without expiration dates. Make someone happy... and then you will be happy too.

God: Take good care of everyone that has known me. Keep them close to Your heart and protect them always. Keep on blessing me and my family. Thank you for the few good people who never give up when it comes to me. I am deeply grateful, and always humbled. Please look out for Brianna, MJ, Tabs, Lucy, Ally and Mary, and so many other kids that are sick or have gone under the knife. Grant them health. Carry them in Your arms. Amen.

Monday, October 10, 2011

Autumn Rolls In!

I am amazed at the things good people can do. September was quite an eventful month... and I definitively learned that it does pay to be good. Bad things happen and we all wonder why, but even more good things happen at the same time... It's just that the good things are left unspoken, and only the bad things get voiced. This is so wrong! I was so sad and shocked that my van was stolen, but then someone comes in and gives us something better and more useful. I am happy that now I can have more choices in where to go as I have a secure transport and secure accessibility and safety. I have not been able to go on a first trip yet, as my parents have been handling the paperwork for the van's plates and insurance. Still, I know it is a matter of days for me to have that first trip in my new van! I can bet my first trip will have something to do with visiting either the Museum or the Zoo. And then I hope we can make the trip to visit Mr. Bussani and Mr.Zarba (my new friends from Bussani Mobility who donated the van)!

It's been exciting. Mommy has been taking care of all my affairs, making phone calls and setting words into actions. I need a new headrest and collar so my wheelchair is actually safe (gosh, I feel I sound like a broken record whenever I mention that... Yes people, the headrest and the collar is a still going issue). At least now both are in process. CMC Seating & Homecare is in charge of that, and they promised to flag these as urgent. Hopefully we'll have better luck now! This time I should get a Savant Headrest and a Headmaster Collar. I expect them to be my right fit. I know that with the Savant headrest I will have my head completely secured when traveling in the van (which definitively makes me happier). Also, a stroller is in works as well by the same company. My PT has pointed out the importance of a stroller as a backup for the wheelchair (in case it gets damaged) as well as since the wheelchair cannot go into just any terrain. I am aiming for a EasyS stroller. Fingers crossed on that matter.

Besides these items, I should be getting power chair evaluation and trials very soon. Mommy contacted vendors from Permobile and Invacare. The tech guy from CMC said he'll contact them as well to see if things could speed up. Since I have an appointment to see my medical team at the SMA Clinic in mid November, mommy contacted the Permobile guy and he will be available that day at the clinic to do my evaluation. I'm happy the first step towards real mobility and freedom has finally been scheduled! I mean, let's face it, for me time is the most precious of things and I was supposed to have a trial for power wheelchair last year! I've heard so many excuses about it! I will go on from a blank page so I only have positive things to discuss. Mommy's new motto is: “No complaining, just take action”.

I am a bit disappointed at my overall services. Now from my two nursing agencies I am down to one only. The good news is that at least now they do have another nurse besides my Teddy (Masheila). So now it is all about my Teddy and new Marie. Still, I miss my Russian connection and my crazy Texan a lot. What can I say, you are responsible for what you domesticate (said The Little Prince). I have heard so much about the area where I live being dangerous at night, and about how some people are not comfortable with my daily care. I understand so much more than people credit me for... Yes, the area is dangerous and Mommy is very unnerved by it... but we all just have to hold on and believe things will get better. We won't live here forever. Somehow, someday, we will go move to a safe house with a small backyard with roses and sunflowers... And who knows, maybe I'll be able to have a small butterfly house and we will all be able to bring mommy's cats to live with us (Mommy has 8 cats back at home in Puerto Rico, and she misses them so much)!

And about my daily care... (Sight) When will people understand that I am alive thanks to that care that they dread? It was not something mommy and daddy made up, it is something Dr. Bach created, put to practice, and it is something that works for me. I follow NIV, non-invasive care using bipap ventilator. It has its perks and its hindrances, but it is all following doctors orders. If something endangered me, Mommy and Daddy would not approve of it. I know some things are scary for whoever does not understand all the processes, but I am not scared of it. It saved my life 4 years ago. It continues to help me be healthy. And when I an sick, NIV is difficult but it works in time... with patience and diligence. My care seems easy at first glance, and I seem to be so strong and well... but I am fragile and in order for me to thrive in life I do have to go through my routines in sickness and in health, no exceptions.

I am deeply sad that I give my heart to all who get to know me, and then it gets broken each time someone departs reason or no reason. It all makes me tougher, and wiser... It all makes me appreciate those that love me so much even more! I constantly see people coming and going... I wish I had friends coming here to see me and talk to me and joke with me just because they felt like it. But... I understand. I love. With time you just learn to smile when you look at the stars because in a far away planet you know there is someone that you domesticated... hidden, far away... but there. And I know that if I feel that way, they must feel the same way about me... They must smile when they think of me. See? I understand much more than people think.

October arrived, and I'm so excited at everything my teacher, Mr. Farina, has been completing with me! Love these projects. I love dissecting the sunflower, writing my name with beans, the countdown for Halloween, the pumpkin project, the monthly calendar (of course)... We have been quite busy! I can't complain from my school time. My PT and my SLP are excellent. I just hope that they get to finally send an OT so I can get to complete more of my goals. I had also heard at the end of Summer that I was going to do some Skyping with the school, video-conferencing with the kids at the PK classroom over there... I was quite hopeful for that. I don't know why that tech project has not begun if all was setup. Ah, public services and their hicups! I still keep my hopes up. Mommy has never let me down, and I know she'll make things happen like magic. She's a witch, you know?

I completed two more projects of my own. I created a razzle-dazzle sequin under the sea seascape complete with glitter and some googly eyes. I also completed a bat to hang from my bed. I guess the legacy from the Camp at the Museum is that now I am more crafty!

I also got my last vaccine shots... Dr. V says my next vaccines should be when I turn 11. I also got my flu shots. Dr.V is not too convinced I'll get the Synagis shot, but they are waiting on insurance to see what happens. I have a dentist appointment next week. I gotta try to make all visits before our complete outings shutdown (when cold weather comes in and snow stops us until Spring). Sinus pressure is beginning... as usual. I just hope Autumn stays a bit longer, not just two more weeks!

So... That's all folks! I had action, drama, suspense... Many things running, many things to do, much love to keep giving. Life is a constant gift, a constant miracle. God is definitively the Master Artist!