Monday, September 26, 2011

I've Got A Van!

Wow! This is AMAZING! There are no other words to describe what happened today! There were many phone calls, I heard something about going out (and of course I thought "yeah, right")... And then I saw the WPIX van, and the Help Me Howard crew! Right here in our parking lot! And they were not alone, they came with our new friends from Bussani Mobility Team... They all surprised me with an adapted van!

I could not believe my eyes! Flashes from everything that we went through in our old van cluttered my head, but then I saw that someone was inside the van... And as he demonstrated how I could simply wheel my way down easily sliding out I almost screamed with joy! No more drama about the wheelchair being loose inside, or jumping in the back of the van in a carrier (true story when we were towed back at the Museum... we thought the window would not make it!). And no worrying about the snow! And the ramp... it is attached, and it is powered! I smized with my eyes as I saw a burgundy bundle of opportunities right there in front of me! All this for me! I mean, all this for my family! I see that what I read every night, about being kind and following the Golden Rule, and about the good things that happen after many hardships is true! Each day I am more humbled and more amazed with all the miracles that happen around me. All that, plus now I'm a local celebrity too!

Here's what happened, as it was broadcasted in the WPIX NY news at 5:00pm in the section Howard's Helpers. You can't miss me getting my van's keys!

So, even if I am at the beginning of carefully monitored outings and the soon to come mandatory lockdown that SMA kids get when Fall arrives and lasts until Spring decides to melt away the snow, I know that I will get to experience new adventures as I have not experienced them before. I just know that the Holidays are going to be even more special this year! All thanks to Mr. Bussani, and the good people that gave their time to help me... and my family. And of course, thanks to Howard!

And a note to God: You always go beyond and above for me. Thank you for taking care of things when my parental units reach the end of their rope. You are truly the friend that never fails.

"Do not withhold your mercy from me, O LORD; may your love and your truth always protect me."
Psalm 40:11

Sunday, September 18, 2011

Help Me Soar!

Mommy created this account so people who want to help me get some cool but expensive stuff can make donations at will. It is through FundRazr, and using Paypal.

This is the button to get there. Here goes:

Help Me Howard Spreading The Word!

Last Thursday was quite eventful! Howard Thompson, who has a segment on WPIX called Help Me Howard (and is quite a local celebrity) came to visit me! He interviewed Mommy and Daddy about my stolen van and about me. That was so cool! On Friday night I was the theme of his segment, and he asked his helpers to help me! Hopefully someone will be moved to do so. I'm happy that at least someone tried getting our voice out. It may be really hard to get another van... and even harder to equip it again with everything it had, but at least I feel my family didn't went down without a fight.

Here's Friday's segment:

Howard also wrote in his blog about it all. Check it out:
Help Me Howard's Blog

So... I am crossing fingers that yet another miracle happens in our lives! Because yes, bad things have happened to us, but the miracles are daily.

Saturday, September 17, 2011


Just me, and Mommy, and Daddy, and my sister Kalisto. Always together, through thick and thin! And I wouldn't have it any other way.

Tuesday, September 13, 2011

Mosaic Project Finished!

My godfather bought me a kit for doing a mosaic, but since I was sick I had not been able to tackle that project... until today! I actually began yesterday, but was too tired to go beyond just doing the body of the butterfly. Today I finished the butterfly, the snail, the bumblebee and the worm. Looks awesome, yay!

It was a bit hard to get the right angle so Mommy could help me maneuver my hands to catch all the little colored foam pieces... We mastered the art of mosaic! We applied glue dots on the specific areas, that was fairly easy. We tried using a tweezers to grasp the little squares but that was quite frustrating... In the end, we used a pencil. We would pat the eraser in a bit of glue, then "fish" the mosaic piece. Great idea! Painless, fast, and fun!

Here you can see the unfinished piece... the bad light doesn't help (I don't get how Mommy stands that yellowish light). See how it all started to take shape? I confess I was skeptic, but the background music helped me concentrate on the task before me. Mommy was surprised at how I was paying attention. Of course I peaked every now and then to see if the TV would play a show I like... but I did focus on the project and I was eager to finish it completely.

So... Here's the final outcome. After doing this craft, Daddy took me back to my bed and Mommy placed my art work in an orange background. It really pops! I love bright colors! And I definitively love how this turned out.

I'm still waiting for my classes to begin. At least I know my teacher will be back... I just don't know when. My SLP called and should be back by the end of the month. My PT will also be back, and a new OT will begin somewhere in time. I'm just glad I have some projects to complete... Now that I'm warming my engines, I should go on to do a sparkly sequin project that my Godfather also got for me. And then, to the big project: The Solar System! Mommy got me a Solar System for my birthday so I could paint it and hang it over my bed, but I was too sick to even bother looking at anything... I am glad I am back in action!

It's good I have things to take my mind off the stolen car event... No use on dwelling about the bad stuff, I know good stuff should happen to me especially if I keep on being positive. I may not get what I want, but I always get what I need. Amen to that!

Monday, September 12, 2011

My Car Was Stolen!

I had no idea of what was going on last night when Mommy and Daddy were going crazy making phone calls... Today I just heard the news as they were talking to my nurse... Our car, MY CAR, was stolen! It's incredible, unbelievable! The car was parked just in our designated parking, behind the apartment. No one saw anything... And mind you, I say it is my car because the reason my parents got it was to be able to take me out in selected safe rides.

They had bought the mini van, a white used 2000 Caravan, they got the U-Haul and a wheelchair carrier... Inside the van was my safety seat-belt ties which are expensive as they are special ties (I cannot be seated so I must travel laying down, these special ties go holding my body in place)... Also inside the van was my sister's stroller, my sister's car seat, two of her favorite toys and the brand new emergency battery charger. All the stuff inside ads up to $1,500. The van was $2,3000.

My parents had moved heaven and earth, saving a lot, to get the van and get it fixed so I could ride safely. It was my van by all means... I feel so bad I just want to cry. They just got the van 5 months ago, at the end of Spring. I went to the Museum's camp thanks to having it... This is so crazy! It was obvious the van belonged to someone with special needs... The handicap sign was in front, hanging from the mirror. The wheelchair carrier was on the back, joined to the U-haul. Everyone in the street saw us coming and going for 6 weeks... Everyone knew who I was. I feel so sad beyond words. So much sacrifice, and this happens!

My parents mentioned the car had no theft insurance as it was pricey, so it is all a loss. If the police find it, then we have to pay for a tow... money that we don't have. This is so messed up! How can people be so evil, specially in these days that so many natural disasters are going on and it is obvious we should be in the right mind of helping one another? I don't understand this... I really don't.

So... Now all that is left to do is see if the van turns up... But that is not likely. Who knows where it is...

God, I know things happen for a purpose... I don't understand why must we go through so many hardships in a row... but it is all in Your hands. I know You must have a bigger plan... I know in the end, good prevails. Keep blessing us with love and health, which is the most important thing of all. Amen.

Thursday, September 1, 2011

Getting Better

The very rough days are behind me... FINALLY! It has not been easy, but I am getting better. That is the trade-off of my SMA condition, any simple small cold takes two to three weeks to get off me. I was lucky that this was just that, a simple cold. I did not end up in the hospital thanks to my caregivers who by now know what to do and do everything fast and furiously!

Right now it is past midday and I am chillin' here in bed. I'm watching the BBC Planets series again (I watched all episodes last week and I loved it). Right now the first episode is ending... I love the planets. I know this may sound so old school, but I would love to be an astronaut! Space: The Final Frontier!

Anyway... Being sick has been too rough. What really makes me mad is that I could not spend all the time I wanted to spend with my Godfather... I was looking forward to him reading me some stories... Hmm... Maybe he can do just that through video-conference! Just like the e-message I got from Santa Claus, he could read to me that way! I am such a high-tech geek already! Hahaha... That will have to do, but I hope he comes back soon. Face-mail is better than any other kind of mail.

I'm always with Kailan and Ming Ming, and Thinga hangs around ready for emotional support (or actually for supporting my bi-pap cables, Thinga and the doggie are very good and handy for that purpose). My way of escaping it all is through my beloved shows... Thank goodness for Wonder Pets, Kailan and the Veggie Tales! They make all these discomforts and treatments much more bearable.

I have not been able to read much or do any projects. The respiratory therapies leave me quite tired... so it's either watch a TV show, a movie, a documentary, or sleep. At least I am definitively feeling better, so it has been two nights in a row that I sleep mostly well (I get interrupted for respiratory care anyway, but I barely realize it as I am in deep sleep). That is definitively good news. Rest is mandatory for recovery.

And I better recover within the next four days! School should start next week, and I don't want to miss a thing! I'm looking forward to many projects and artistic creations. I am eager to apply all I learned through Summer and to learn much more! I'm crossing fingers so the cooties go away as fast as they came!

GOD: Thank you for taking care of me always, and for guiding my caregivers and doctors so I get well soon. I know I must have patience, and I know that I have to take each day one at a time. Protect me and all who are around me. Thank you for always providing for me. I cannot complain, You give me all that I need and You surround me with peace, and love. I ask you to take care of so many kids and families that right now are dealing with serious illnesses and situations... grant them all serenity, courage and wisdom. Carry us all in your arms. Amen!

My Turtle Tuck

This is the turtle that I got as a birthday gift. I named him Turtle Tuck, in honor of Tuck from the Wonder Pets. It is very small, just two inches long.

It has a long neck! Most of the time it entertains himself taking his head inside the shelf, then outside, then inside. He's so funny!

He may be small but don't be fooled by its size! It has razor sharp nails! I felt him running in my hand and I definitively didn't like that. Too cold, wet and sharp for me. I rather watch him while he's inside his home.

Daddy says that Tuck can grow up to 11 inches if given appropriate habitat, food and love. I hope I get to watch him grow. It would be nice to get him a bigger place... I'm making plans to do so. He's a handsome turtle!