Poetry Out Loud

I. Am. So. EXCITED!!!!
I joined this thing called "Poetry Out Loud: National Recitation Competition", and it's coming up pretty soon! The competition is basically where you have to memorize a couple poems and then recite them up on a stage, and you are judged based on your accuracy, voice and articulation, evidence of understanding, and appearance/physical presence. One of the poems has to be 25 lines or fewer, and the second poem must be from before the 20th century! The competition starts at a school level. If you win, then you go to district, and then state -- and eventually the National Finals!!! I kind of doubt that I'll make it THAT far, this being my first year, but I hope to at least win at the school level.
I've chosen the poems "The Ocean" by Nathaniel Hawthorne, and "It Couldn't Be Done" by Edgar Allen Guest. "The Ocean" was appealing to me because it sounds so dark, deep, smooth, and a little mysterious, but still beautiful!!

The Ocean has its silent caves,

Deep, quiet, and alone;

Though there be fury on the waves,

Beneath them there is none.

The awful spirits of the deep

Hold their communion there;

And there are those for whom we weep,

The young, the bright, the fair.

Calmly the wearied seamen rest

Beneath their own blue sea.

The ocean solitudes are blest,

For there is purity.

The earth has guilt, the earth has care,

Unquiet are its graves;

But peaceful sleep is ever there,

Beneath the dark blue waves

The reason that I picked "It Couldn't Be Done" is probably because of the message that it sends across: If you just try hard enough, anything is possible! It was also a really inspiring, uplifting poem.

Somebody said that it couldn’t be done

      But he with a chuckle replied

That “maybe it couldn’t,” but he would be one

      Who wouldn’t say so till he’d tried.

So he buckled right in with the trace of a grin

      On his face. If he worried he hid it.

He started to sing as he tackled the thing

      That couldn’t be done, and he did it!

Somebody scoffed: “Oh, you’ll never do that;

      At least no one ever has done it;”

But he took off his coat and he took off his hat

      And the first thing we knew he’d begun it.

With a lift of his chin and a bit of a grin,

      Without any doubting or quiddit,

He started to sing as he tackled the thing

      That couldn’t be done, and he did it.

There are thousands to tell you it cannot be done,

      There are thousands to prophesy failure,

There are thousands to point out to you one by one,

      The dangers that wait to assail you.

But just buckle in with a bit of a grin,

      Just take off your coat and go to it;

Just start in to sing as you tackle the thing

      That “cannot be done,” and you’ll do it.

I have already gotten both of these memorized (surprise!) and so I just have to work on my enunciation and physical appearance. I don't think that I really appear all that confident when I am reciting, mostly because I am trying to remember what words come next! So I have to work on physical appearance/appearing confident the most.

The competition is coming up soon -- in the beginning of November -- so wish me luck!! I'll make sure to post about it the day of and/or the day after, so you guys know what happens. :)

~Mattie <3

Puppies

Do you have any idea how awesome puppies are?! They're, like, ALWAYS warm, even in the middle of winter. They almost always love to cuddle (there's one curled up in my lap right now). They can fall asleep anytime, anywhere, as long as they're comfy enough. There adorable, and fun, and playful. We call Paco my  "therapy dog", because whenever I feel bad or sick or anything like that, he comes over and sits on me. He growls, and sometimes snaps at, anyone who tries to touch me if he doesn't think I'm okay! And then there's Raphah, my kinda-sorta service dog. He's super playful, and it's hilarious to watch him zooming in circles around the house when he feels hyper!! And it's pretty cool, trying to teach him tricks and things. If our dog Chloe was a person, she would probably be a model or something! She's really pretty... but also, very picky and can be grouchy at times. Cee-Lo is like the baby, even though he's older than Raphah. Cee-Lo can be found sitting in a lap, sleeping on the couch, or snuggling in a blanket. He is like a heater: constantly emitting heat! And he falls asleep so easily, and doesn't like to wake up.

My puppies are all wonderful!! : )  Just like us humans, they all have their different personalities and qualities. But in a way, they are almost better. They know when you're upset; they can make you laugh without even really trying to; they're just plain ADORABLE!!!! I love them so, so, SO much. <3

~ Mattie

I am.......

I have hobbies.

I play the piano, read, write (um, duh?), I hang out with friends, I study, I sing, I dance (not very well), I draw, paint, and (try to) sketch.
I take care of my dogs, I play video games, I will (occasionally) go on my phone or Facebook. I (kind of) exercise on the Wii Fit, I volunteer at my church for the Worship and Drama Team, and I love to sit outside, just watching and listening (though I am always willing to go outside and start being crazy, too!).



I can be random.

I ask almost everyone about their favorites (color, food, movie, game, etc.). I am known (among my friends) for randomly changing the topic. One of my friends will tell people she doesn't even know that she is a "rabies-infested, radioactive squirrel" (in fact, that's how she signed my yearbook!).



I can be dramatic.

I am on the Drama and Worship Team at church, I want to find a theater or acting club to join. My nurse calls me a "drama queen" (and so does my entire family... and most of friends....). I can cry, laugh, or scream at some of the tiniest things. Sometimes, I exaggerate on purpose, to be funny -- and other times, I hardly even notice that I'm exaggerating things. Yeah, really.




I can be... myself!

I am all of the above. I am random, dramatic, creative, nerdy, helpful, musical, fun, and funny. I try my best to make people laugh, and to make them feel better if they are upset. I write, and play music... and I have tried writing my own music! (It didn't turn out so well.) My family and I love each other, like each other, dislike each other, fight, laugh, joke..... we're a pretty awesome group of people, if I do say so myself.




Now that you know who I am.....

Tell me, who are you?

Surgery (again)

Well, it is official....
In about 6 weeks, I am having a surgery to get another tube placed. Why? Well, my doctor's diagnosis was that my "head and my body don't talk". I can honestly say that no one has ever said anything like that to me before!
Truthfully, I am freaking out over this new tube. It's being placed in my stomach, not too far from my feeding tube, and I have not had a great experience with that kind of thing. When you get a feeding tube (like I currently have now), you usually start out with what's called a "peg." After about 6 months, they pull out the peg, and place the actual tube in. When I had my peg pulled out, everything just "fell apart", as my mom puts it. What was supposed to be a 30 minutes procedure -- outpatient, not in the O.R. -- turned out to be an emergency surgery that kept me in the hospital for a week afterwards. And did I mention how much it hurt, to have a tube placed in your stomach, but not actually IN your stomach, and have your body pumped up with fluids that were supposedly going straight to your belly? Yeah. Not fun.
So you can see why I am not super-excited about this new procedure! Especially considering that I don't know my doctor that well, since we just started seeing him. (If you are reading this, please do not be offended!) Oh, and just yesterday I got to meet the surgeon -- who apparently doesn't even work at my regular hospital. She works at another hospital close by (I can't spell the name). Everyone that I met yesterday -- the student, the PA, and the surgeon (along with my regular doctor) -- were all super nice, and tried to answer any and all questions that my mom and I had.... but, I mean, we just met them, you know? And my dad is currently out of town, so my mom and I went into the meeting with just my nurse as backup. We couldn't even talk to my dad today about scheduling the actual operation. We just chose a date, put it on the calendar, and let my dad know about it! At least he'll be here for the real thing, though.
So, yeah, I'm totally freaking out inside... just don't tell anybody, okay? (Yes, I am aware that I am posting this on the Internet for the whole world to see.) I'll make sure to keep you guys updated over the next few weeks.

Until then, have a great night and I will post something more cheerful tomorrow!!!
~ Mattie <3

When I Played The Piano....

I sat down on the bench,
Reached out to play,
There were people all around,
But I did it anyways.

My hands, they traveled up the keys --
They danced, they soared, they twirled,
My fingers, they played, happy then sad,
Slow, then faster they whirled...

The music, it seemed to run away;
The notes, their sound was fleeting.
My hands, they kept moving,
Away from each other, then once again meeting.

I neared the end of the song,
I tapped the last key,
And those others and I listened to
The music, which was floating and free.

I did not care what those people thought,
My music, it frees my mind.
Those others, they can mock me if they want,
But when I play, I go other places, never knowing what I will find.

Camp Twin-Lakes and Some Poetry

Hey everyone!!!
So, yesterday my family and I got home from Camp Twin-Lakes. It was a ton of fun!!! The theme was "Under the Stars Wars", so everything was Star Wars-related. There was a scavenger hunt and a raffle for 8 Star Wars Angry Birds stuffed animals, and I won Chewbacca! He was the cutest one. On Saturday night (or was it Sunday?) they played one of the Star Wars movies in the gym. And on the first night, Friday, they had a dance party... which wasn't really Star Wars, but it was still super fun!! I learned the moves to the song "Happy" by Pharrel Williams. My friends Katie and Addi (and their parents and siblings, of course) shared our cabin. And Katie and I were in charge of calling out the numbers for Bingo before almost every meal!! It was super, super, super fun!!!!!!


On the way to Twin-Lakes, I was kinda bored, so I started writing a poem. I'm really proud of this one -- it's my longest poem yet, and all of the verses really connect to each other. At least, that's what I think.... feel free to leave feedback/criticism in the comments section! Oh, and I haven't been able to think of a title, so if you have any ideas, please share!!

Jess was often called the "fairest of the fair"

'Cause she had bright, sky-blue eyes

And long, golden hair.

She was followed 'round by all of her friends;

She read so many magazines, 

And followed all the trends.

But Jess acted like she was better

Than everyone she knew.

She wasn't always super-nice,

Made others feel quite blue.

It took a while for this beauty to see

She was losing friends --

By the time she noticed, 'twas too late

For her to make amends.

Pearl could be described by people she'd just met

As a diva, a drama queen, Shakespeare's Juliet.

She wants to impress, so she chooses to lie --

What a tangled web she weaves; what large knots she ties!

She'll tell you, "I'm a princess

With a tiara made of jewels."

But if you were to believe her,

You would be a fool.

And when her friends find out the lies,

They sigh and walk away;

For they will not be friends with someone

Who, the truth, won't say.

Tris is always very quiet,

She is really shy. 

If you want to ask her something, 

You will have to pry!

Tris stands in the corner with

Her back against the wall...

She has few friends to catch her if she

Stumbles and she falls.

Tris loves her teachers, has a few friends,

But is scared of all the rest --

Mostly because she was once put down

By a pretty girl, named Jess.

Liz is always studious,

She always gets good grades.

She was the first to get her license

And a job that pays.

Liz doesn't have a Facebook,

She doesn't go to parties.

She doesn't want to be teased

Or called "nerd", "geek", or "smartie."

She doesn't hang out all that much;

She has never laughed or played --

Never, that is, until the girl

Met someone else named May.

May is super sweet and caring,

And she keeps up with her grades;

She's pretty and kind,

And her smile never fades.

She won't hang out with Jess or Pearl,

She says they are too mean.

But May is still friendly -- even popular!

She was voted Homecoming Queen.

Even Tris is May's friend,

And they love to talk together.

May's kindness and caring will never end --

No, they will last forever.

~ Mattie <3

Mito Awareness Week -- Answers :)

First off, I just wanna say THANK YOU!!! to all of the people who were willing to put themselves "out there" and ask me a question! It was great getting so many responses, and I just want to let you know... over 3,200 people have viewed my blog! This is all thanks to you guys!!! You've helped spread awareness, and made one little girl very happy.

- What's been the hardest thing about having Mito so far? Have you noticed any new strengths that have emerged as a result of dealing with it? What's the biggest thing folks seem to misunderstand?
Well, the one of the hardest -- and most rewarding -- things is meeting those people who don't understand. I mean, when you stand up out of your wheelchair and start to move around, you can get some pretty weird looks, and occasionally some rude/embarrassing comments or questions. But there is also that emotion, that rewarding feeling, the pride you get from knowing that you've just made one more person aware. That you're that much closer to awareness and to a cure. Hmm, any new strengths? Well, when you get used to the "meeting new people, getting over the awkwardness of introductions" thing, you find that you're a whole lot more willing to put yourself "out there". You can put yourself on the spot. You meet more people, spread awareness, and find that you aren't really all that shy or embarrassed about it. Now, the biggest thing that people misunderstand is that I am a normal girl. Yeah, I've got a weird disease that no one's ever heard of. Sure, I get tired, and take breaks, and need extra time. But I still love to play piano, and talk to my friends. I may take some extra time, but I am gonna take that test and get an A+! I love to read, and since my hands get tired writing, I type my stories and poems instead.

- What is the hardest thing you have to deal with relating to mito? Is there anything those of us without mito could do to make things better or easier for you or others with mito or is there anything you wish others understood about mito (misconceptions you run into)? Anna Ziller
Again, the hardest thing relating to mito would be meeting those without. It can be pretty difficult! I mean, imagine introducing yourself to someone you've never met. You tell the person your name, how old you are, etc., and if they ask, you explain why you are .... blank. The "blank" can be filled in with "sick", "different", "conspicuous", "noticeable", "shy"... anything like that. A lot of people focus on the "blank", and not on the rest of the information. You can find yourself being labeled a certain way because of that "blank", and the person you meet might just forget that you like vanilla ice cream or that your favorite color is turquoise, not aquamarine. That can be hard. Now, something that people could -- and really should -- do to make things easier for those with mito, and many others, would be to NOT focus on the "blank." Don't forget that it's there, but don't make it your focus.

- What would be the hardest part of this disease for you? Also, Dawn asks how you manage going places. She gets tired so quickly. Kristy Garrigus
I am (usually) able to manage going places by using my wheelchair. If we're not going to be walking a lot, I might not bring my chair, and I'll walk in and out of wherever we're going. But at school, I am almost always in my chair! It does help that I have a power chair in addition to my manual. The school bus comes and picks me up in my power wheelchair (that lift on the bus is super fun!!!), drops me off, and I stay in the chair until I get home. When I'm going somewhere with my family, I might take my manual and have someone push me. Or, if I feel like being independent, we'll put my power chair on the back of the car. Another thing that definitely helps is that I have to work on conserving my energy, a LOT. I am constantly taking my temperature, pulse, and blood pressure to make sure they are staying relatively normal, and I have a nurse that goes with me to school, doctor's appointments, etc., 5 days a week.

- To what extent does mito disable your body (which body parts does it affect)? Maggie Hipps
Mito affects almost every part of your body. It can hinder people's ability to talk, walk, and even eat or drink! The parts of the body that need the most energy, such as the heart, brain, muscles and lungs, are the most affected by mitochondrial disease. People who have mito will get tired much more easily than other "normal" people. They are also more likely to have strokes, seizures, sight and hearing problems, muscle failure, and diabetes. However, not all of this affects me personally. I have hearing problems, and wear two different hearing aids at school. I do have to wear glasses. I get tired pretty easily. Mito can affect my stomach, making me feel full or super hungry at times. I wear a C-PAP to help my breathing at night, and I have a port to make it easier for my IVs. But I can walk, talk, see, hear, eat, and drink.

- What is the average life expectancy for someone with mito? Angie Hipps
This question is a little more difficult, because people with mito are constantly misdiagnosed. It also really depends on the severity of the person's illness. Some people with mito cannot see, hear, talk or walk, while others like me can lead relatively normal lives! While some of those affected can have lives that are a normal length, many affected children do not survive past their teenage years. This is due to misdiagnosis, the severity of the disease, and also just the plain lack of a real cure.


Anyone who sees my blog, please feel free to comment!! If you have more questions for me, feel completely free to post it, even after Mito Awareness Week is over! Spreading awareness isn't limited to one week per year. I will answer anything, anytime.
Thank you so much to everyone who was willing to post a question to me or share this post!!! I really, really appreciate it. And I am so glad to have readers like you, who care about the subject and post replies, and read everything I write (even the times when my writing isn't all that great).
~ Mattie <3
"Spreading Awareness, One Person At A Time"