So… Throughout the last 6 months, I’ve been coordinating with a teaching faculty member on a BIG mandatory tutoring project that he began to support the subject of his dissertation. Today, he told me that my name will be included in any research he publishes for the dissertation! Holy cow, am I excited! I might even get to take part in writing the conclusion. This might be smol beans but I’m stoked nonetheless!

HAPPY 2020!!

Happy New Year - Back to Business!

Happy New Year – Back to Business!

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Little Sparrow Freed From Its Cage

September 24, 2018

Per aspera ad astra - Through adversity to the stars

Hello there everyone! I have quite a bit of news to share with all of you lovely readers, as it has been quite a while since my last update. Hopefully my writing habits will be a bit more consistent now, due to the main reason I am writing this update. So grab a cup of tea, or coffee for you Americans, and be prepared for a lengthy blog entry.

Commencement to Independence

For the longest time, it was my belief that graduation was just another event where I would only witness others experience the joy of being released from the dictatorship of homework and the school setting.

Much of my student experience has been infringed upon due to various circumstances; whether illness was to blame, being placed in classes my superiors wrongly believed I belonged, or unwillingly leaving the only place I called home, as well as exiting the lives of many I held and hold close in my heart.

Not everyone experienced the same scenario as I did, which is wonderful. Even so, for much of my life there was a common denominator.

Adversity.

Due to my disability, my experiences and memories of the school setting are extremely unconventional.

Which leads to the less self-pitying part of my screed. If it weren’t for all those obstacles, and more, throughout my existence as a student, graduation would not grant me the same satisfaction and pride as it does now to declare to you all that I am no longer a high school student. September 21, 2018 was the day I was set free.

Although there are plenty of memories I have to look back on that made my school days less dreary, so I shall not admit that every second of my years at school were terrible, as I had the good fortune of making a few friends along the way as well as learning some lessons that allowed me to grow as a person.

So I thank all of you who have stuck with me through the good times and the not so good times, because I couldn’t have made it here without you.

I’d especially like to thank my first teacher who set me on the right path to homeschooling. You know who you are, with your huge green duffel bag full of wonderful toys each day as we sat in the garden room. Thank you for always being there for me academically and as a friend. You mean the universe to me.

Every experience and every person that one encounters affects the future, individually and worldly, good or bad, long or short. Because, who knows? Maybe one day someone who experienced something they perceived as awful will change the life of another so someone else will never experience what was already lived through by another.

Celebration?

To celebrate this momentous occasion, my grandmother and I designed what would normally have been the top of my cap to go along with my gown.

Then we made a message in a bottle, with the message being the poem The Road Not Taken as it is our favorite poem.

But the most important component to all of this is the timing of everything that has unfolded over the past few weeks.

Enjoy the first ever gif I have ever created, of course it’s to do with Stephen

I managed to finish the last of my exams the day directly before my grandmother’s birthday, which wascoincidentallypurposefully happened to be on my cousin’s birthday. Then, on Friday, I was officially set free from my classes on the birthday of my great grandfather. Everything took place over the course of three days, and three birthdays of three people that mean the world to me.

Funnily enough, exactly one week to the day, another event unfolded spontaneously. I was granted the most amazing graduation gift. A friend, a very old friend, of tremendous significance and value to me. We had not seen each other in almost nine years, but we always kept in touch. Last Wednesday, we broke our hiatus and had lunch together with our grandparents. I felt like I was in a dream. I couldn’t believe we were even in the same room. He has seen my old self, my pathetic self, and my happy self, and he never left. He’s one of a kind and I don’t know what I would do without him. Making him laugh after taking a nervous drink of water while we were at lunch and burping due to my liquid consumption was one of the highlights of our visit together. Hopefully we won’t have such a lengthy hiatus between seeing each other again, which neither of us believe will happen. I already can’t wait to see him again.

Then on the Saturday following that Wednesday, I swam with my other best friend who happened to come home from college that weekend. I honestly don’t remember the last time we just chilled out in the pool, or anywhere, and hung out like two normal teenage girls. Granted I did complain quite a bit about school work after we got out and had lunch, but that wasn’t the entire visit. It felt so normal to just hang out with my best friend, and I can’t thank you enough (you know who you are if you’re reading this). I couldn’t have asked for a better way to finish my classes.

But graduation is supposed to be a big deal, right? A huge celebration is supposed to take place, right? Well, I honestly have no idea how else to celebrate my accomplishment. I would love to have a party and do something the way everyone else does, but many of my friends and family live far, far away. So out goes that idea… Nevertheless, if no other celebration takes place, I am forever grateful for being able to visit with my friend from New Jersey thanks to his and my grandparents.

Moving Forward

Now that I have soooo much time on my hands, I don’t know what to do with it! Well, I do, but it’s only been almost a week since I finished my classes and it’s still rather odd. I spent the weekend creating and improving a sort of sketch that puts together my Halloween costume. Yes, I’ll be 19 by then and many will say I’m too old to do Halloween, but you know what? Adults are allowed to dress up and have fun too. Halloween is not just about the candy, well not to me anyway. To me, it’s about letting yourself be free to be whatever you want to be for one day of the year. As it seems that it is only socially acceptable to dress up when one is an adult around Halloween, if one were to dress up any other day of the year you end up being labeled as a psychopath.

Okay, maybe not a psychopath, but anyone dressed up as a character or dramatic makeup is worn outside a concert, theatre club, comic convention, or Halloween, etc., side glances and glares will be made.

I decided that I will be dressing up as my own version of Sherlock, as long coats are as much of a pain to get on as a dress. I have a few components of my costume together, but I still need the hat, scarf, and maybe shoes? I may just go with a pair of short boots that I have as finding shoes in my size is an entirely different story.

I wasn’t sure if the coat I had would look Sherlockian enough, so I decided that I would put together a sketch of my outfit to see how it would look. So I put this together.

Originally, as you can see, there was no face. But I worked on it and worked on it over the past few days and this the outcome. In the beginning I did trace the undershirt, but that’s it. I figured out the rest. I’m very proud of it, as it is the first drawing I’ve done in quite a while that I haven’t gotten angry with.

Having this freedom has made me realize that after a few days of numbly looking at social media, I am suddenly craving to learn new information and I miss my math and science classes. I think that within the next week I will unconsciously start to read books again just from the slight need I’ve had to expand my knowledge again. Maybe I’ll even start writing stories again due to new knowledge, as I have written down a few ideas for short stories the past few days. In the words of a good friend, the possibilities are endless.

Spinraza News

Luckily I have school finished to get through my next injection. I was reminded that I have to go through re-approval from the insurance, making my injection date is a week later than I wanted. This week I have to get blood drawn again as well as other tests.

Speaking of tests, I had to do a strength test last week, my first one after having Spinraza. My results have to either stay the same or improve in order for the insurance company to say I can keep having Spinraza. Needless to say, I was terrified that I wasn’t going to improve due to their standards. I’ve noticed more strength in my legs than my arms, granted my right arm is noticeably stronger, but I did not anticipate the evidence the strength test would grant me.

The first test was to tear a sheet of paper. No big deal, right? Wrong. I had to try to tear a piece of paper that was folded four times. I tried and it didn’t happen. So my physical therapist unfolded it so it was in half. I believed that I was trying to tear it wrong as I was using my nail to start the tear. But I was wrong. That’s how you physically tear a sheet of paper when you pinch it. So when it cooperated and I split the paper down the middle, I was like “okay, I could totally do that before Spinraza.” Again, I was wrong. When I did the baseline test, I was able to rip the paper but only if:

1. it was started for me
2. it was a single sheet unfolded
3. it only ripped sideways not straight down

My physical therapist kept my old paper and showed it to me to prove that I had improved. After I saw the paper, I felt like Captain America

Go ahead, enjoy that gif because Tumblr doesn’t allow more than 10 images so that’s the last one guys

Once I completed that question of the test, the test was gravy. I was actually able to do other things as well such as:

• lifting a weight I couldn’t before
• completing a short maze test without stopping my pen
• pressing a stupid light button and making it stay on
• opening a container that was entirely too difficult when I tried six months ago

I gained 5 points in the scoring system, from 11 to 16 points. I still can’t get over it. So much has been going on the past… Well, year, honestly. Between myself and my family members, it’s been nonstop.

Well, I think I’ve written enough for this update, probably too much… But whatever, if you guys enjoy these updates you don’t mind. If you don’t enjoy them… Well… ¯\_(ツ)_/¯