Sunday, August 12, 2012

SMA Awareness & Summer Days

SMA Candle Lighting Day

In honor of so many angels and warriors with SMA...
Lighting the path with much hope and faith so there is a cure soon!

This Summer has been quite hectic and eventful. Time is running so fast I can barely catch a breath! My last day of Summer school arrived last Thursday... Mr. Farina help me learn lots of stuff, he is really very special. And new therapists have finally come to stay! I am quite thrilled with how things are moving. I am happy with my new speech therapist who also has many other passions that mirror my girly interests, the new assistive technology guy already brought some stuff so I could try, and my occupational therapist keeps on being enthusiastic and plain awesome... My regular physical therapist is still around. I know everything is on edge, and that all these people will have to keep on seeing me even during the two week school break as there are so many make-up days they need to fill! I don't complain, that means the days will keep on being hectic and fun... And I really look forward to doing so much stuff with these people... Finally, positive people that actually believe in me! It does make a big difference! Look out world, I still have many surprises under my belt.

I hope that I can start my hippotheraphy soon, and that I get to find a place to keep up with my aquatic therapies (I do so at home during Summer, but when Fall cold weather rolls in it is not wise to keep a pool with water that you cannot heat). It would be so cool if I could have a place at home to keep on doing this... but it is just bathing and it has become such a hassle! At least now I heard a rumor that a bathing system is on the horizon so I can actually take showers again (I outgrew my old one... same story as all my equipment...). Now, if only the actual bathroom could be bigger... I know, wishful thinking... but those days at the Virginia hotel left me with a taste of daily baths in a warm jacuzzi, and I really really loved that! Imagine... For me it was such a pleasure to be immersed in water twice a day for 3 days in a row! I felt so refreshed and squeaky clean! And I could move my arms and legs... It is one of the few things that truly make me feel... free... I really hate the cat baths in bed... Sigh... Mommy keeps telling me to not loose faith, that good things come to those who wait... Well... I'm waiting!

And talking about equipment, my stander is scheduled to arrive in my house on the 20th. Well, at least there is an actual date for that... Standing is so important, and being unable to do so just ain't funny. I outgrew my stander, and I've been waiting for 4 months now... Standing helps with cardiac output and bowel movements and overall strength and bone density. Yes, it is that important... Especially on someone like me that can't move and must be lying must of the time. I am glad that it will arrive in just one more week... What a birthday gift!

And yup, I just mentioned my birthday! In just 6 days I will be 5 years old! What a big event! No one imagined that I would beat the odds like this, and it is simple joy to be able to baffle non-believers and to amaze whoever meet me. I made it further than so many doctors predicted. I am a happy outlier that is bright, intelligent, sassy, and won't let anything or anyone stand in the way of my dreams. I know what I want, and I am definitively gonna get it. I don't give up. Yes, I've had my moments of doubt and of being sad and tired and disappointment with people... but I know I am very lucky, life is precious, and whoever doesn't see me as productive and amazing can simply change the channel.

Most of the big challenges don't come from me, but from the people who surround me... But I take it upon myself to show everyone that a simple girl can do anything if only she dares to fight for her dreams. My accomplishments may not be the ones considered normal... but they are amazing and more valuable than what society writes on walls. I believe in me. I am loved. I fight every second for the gift of life. I am curious and yearn to know more, to experience more, and then to share my thoughts and hopes and works with anyone who would stop and take the time to get to know me. I am different, and I love doing what anyone else can do... differently. I am blessed to know that I have so much potential for growth, a family and friends that backs up my dreams, and God to hold me tight and help me move on. My 5th birthday is just around the river-bend... where dreams expand and grow in possibilities. I am glad that I've have the chance to be here, in this world, making a difference one person at a time.

I can't believe that camp is almost over. Five weeks passed so fast! Next week is the last one... I've refreshed my knowledge on person, place and thing... about space and the stars and the solar system... about different cultures and important journeys. My favorite part is still watching my peers... I find other kids so puzzling, intriguing, and fascinating. I get such happiness when I see they want to know more about me, and the way they accept me as I am. Sometimes grown-ups could learn so much from kids... I have enjoyed arts and crafts as usual... I love creating, and using the paintbrush has been quite successful... Still I think I will stick to being a cartoon animator when I grow up... Painting is so much work!

These past days have been about studying and camp and crafts and traveling... I am in the middle of quite a wonderful personal journey, discovering myself even further and enjoying every second to the fullest. This is also SMA awareness month... I wish I could do more about raising awareness for this rare illness... I wish there was treatment and cure right now. I want to breathe without a bi-pap. I want to move without a wheelchair. I want to stand on my own. I want to raise my hand to grab a cup of water. I want to change the page of a book with my fingertips... I want to be able to hug Mommy and Daddy whenever I feel like it and let them know what they mean to me... I want to smile, with my lips not just my eyes. I want to have my own voice and speak up... scream... sing loud and clear! I want to chase away my sister each time she breaks a page on one of my books... and to comfort her each time she knocks herself with the door. I dream for a cure for everyone who has to go through this... so everyone else don't have to... so kids can be kids... so families can only worry about simple things like books and fashion and planning for the future... My future is now. I live and enjoy and dream, now. And I can only trust God, hoping that He will allow me to keep on being here on Earth testifying for the miracles that He make everyday (and that so few actually acknowledge).

So... Busy days have passed, and a busier week is to come... My exciting week. My birthday week. Thank you all for the love and prayers and support... and to God for never failing me and giving me strength to carry on. The best is yet to come! Let the Diva Week begin!!!!

1 comment:

CureSMA4Stella said...

You look so grown up my dear!!! How did this happen?? HAPPY EARLY BIRTHDAY! How exciting-joining the 5 year club with me! Hope we get to meet someday! Love, Stella! :)