What I Want to Believe When You Stare at My Daughter Because of a Meltdown

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Every Tuesday I take my daughters to our local library’s story time. It is one of our few summer destinations where my daughter, C’s hypotonia and sensory sensitivities are not easily noticeable. Both girls enjoy the elevator ride up to the top of the library where all the children’s books are stored. They love snuggling next to one another on worn carpet squares as stories about frogs and princesses and super heroes drift around them. They get a kick out of checking out their own books with their very own library cards. “We are like big girls, mommy,” C tells me each time she reaches her hand into the pocket of my purse to retrieve her library card.

But, today was different.

In the middle of story time, C had a meltdown. It started with tears. I swooped her up into my lap, doing my best to comfort her. Screaming soon followed. The eyes in the room shifted from the librarian to us. I knew that was our cue to exit.

I carried C to the elevator doors to remove her from what was bothering her and hopefully calm her. As I reached for the elevator button, she ran to a bookshelf and threw herself on the floor.

That’s when I saw you. Seated on the couch near the elevator, you looked up from your book and your gaze met mine for a moment. If you’ve ever tried to lift a child with low muscle tone from the floor while in the middle of a meltdown, you know it is next to impossible. So, instead, you saw me kneel down next to my daughter. You watched me calm her to the best of my ability, and once she was calmer, you saw me sternly tell her to stand up. “You have two choices,” I said, “If you feel better we can go back to story time or we can go to the lobby, but you can’t scream and ruin story time for everyone else.” She pointed she wanted to return to story time, and she calmly did just that.

But, I saw you as we walked back to our seats. I saw the look you gave me, and it made my insides crawl and tears well up in my eyes.

Between making our story time crafts and looking through books, I had almost completely forgotten about you until we ran into you again as we stepped into the elevator. We were all in good spirits; I smiled at you as you left the elevator. You didn’t smile back. In fact, before the elevator doors closed, you actually turned around, faced me and stared again — harder than before.

Your stare broke me. And as the elevator doors closed on your stare, I felt doubt sink in. Maybe I didn’t say the right thing to my kiddo. Maybe I should have been more comforting. Maybe I should have been more stern. Maybe I’m a terrible mom. Maybe we shouldn’t have even stepped foot in the library at all today. I did my best to hide my tears from my kids.

As I drove home, I kept trying to unearth the meaning of your stare. It unnerved me. It made me question myself. It left me doubting myself and my abilities in ways I never knew were possible.

 

But I like to believe people are good. That no one would condescendingly stare at a mom who was obviously trying, or judge her if her best wasn’t good enough. I want to believe there was more love than annoyance behind your stare and more acceptance than judgement.

This is what I want to believe:

I want to believe when you first saw me carrying my child to the elevator door you were thinking, “I’ve been there. I’ve done that. I know how this feels. You’re doing good, mom.”

And when you watched my daughter melt into a puddle on the floor, I want to believe you said to yourself, “I wish I still had a little one to sit next to on the floor and comfort and wipe away tears. You’re doing good, mom.”

While you stared on as I helped my daughter stand back up, make her choices, and rejoin the group, I want to believe you thought, “Setting boundaries isn’t easy, and going back to a problem to fix it isn’t for the feint of heart. You are both brave. You’re doing good, mom.”

And maybe none of these things were the reason behind your stare. In reality, maybe you were just judging me.

But, I’d like to believe as we met at the elevator, you looked at us to say, “Today may not have been perfect. That’s OK. You don’t have to be perfect. That’s OK, too. And your kid doesn’t have to be perfect either. That’s even more OK. You’re doing good, mom.”

And as those elevator doors closed and you turned around for one last look, I like to believe it was to wish us well, “Motherhood isn’t easy. You will stumble, and you will fall. Just keep trying. Always keep loving. That’s all that matters. You’re doing good, mom.”

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Thinkstock image by Mike Watson Images

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How Planning an Overnight Trip Is Different for Me as a Disabled Teen

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A few months ago, I went on an overnight trip with my school. It didn’t go very well, but for some reason, I’m going on another overnight trip in about a week. This one won’t be the same as my last trip since we won’t be going to an amusement park (I learned my lesson about amusement park trips, believe me). We’ll be walking around Savannah, Georgia doing a giant scavenger-hunt-like activity called QuestFest, then performing at a concert. Instead of going with my school’s chorus, I’m going with Girl Scout Chorus.

Hopefully, since I’ve explained my disability and needs in extreme (and I mean extreme) detail, this will go a bit better than the last one (fingers crossed). This got me thinking about the differences between how an able-bodied teenager and a disabled teenager may think and feel when it comes to getting ready for an overnight trip. Here’s an example of how it may be for some:

Rooming List

Able-bodied teen worries about: Not being roomed with their friends

Disabled teen worries about: Not being roomed with someone who knows about their disability

Medical Forms

Able-bodied teen thinks: “Ugh, why are there so many forms?”

Disabled teen thinks: “Would [insert medical condition] count as a disability? A chronic condition? Both? Should I mark down ibuprofen as a medication? Would I need a prescription? Doctors’ note? Both? When do I need to give the ibuprofen to the adults? Why can’t I just carry my dang ibuprofen myself?

Packing List

Able-bodied teen prioritizes: Make-up, cellphone, cellphone charger, battery, camera, snacks, cute shoes

Disabled teen prioritizes: Meds, doctors’ note, prescription, water bottle, that one pair of sandals they can actually walk in

Train Ride

Able-bodied teen mentally prepares for: Being on a train for hours on end

Disabled teen mentally prepares for: Having their head jerked around for hours on end because they can’t hold their head up

Packing a Swimsuit

Able-bodied teen freaks out about: Looking fat

Disabled teen freaks out about: People thinking they’re fat, then people thinking that their disability is caused by them being fat, then people thinking they’re making up their disability so they have an excuse for being fat, then…

Looking At the Group List

Able-bodied teen thinks: “Yay, my friends are in my group!”

Disabled teen thinks: “Yay, the adult who will be in charge of my meds is in my group!”

Looking At the Itinerary

Able-bodied teen says: “We’ll be walking a lot? Yay, I can get in some exercise!”

Disabled teen says: “We’ll be walking a lot?” (internally sobs)

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Thinkstock photo by Seb Ra.

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To the Teachers Who Accept Me and My Disability

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I’ve always loved writing poems. Whether they are acrostic, haikus or limericks, I have always written poems with ease. I especially love showing them to my teachers and submitting them to school newspapers. During the Japan unit in Social Studies, we had a packet in which there was an article about haikus, so one of the questions in the packet was to write your own. The teacher graded them during class, and when she got to mine, she loved it so much, she read it out loud! I loved the recognition I got that day for my haiku.

Some of my fondest memories of middle school include sitting in the library during Work Study during the winter, writing poems as I watched the snow fall from the giant windows. Poems have always been super meaningful to me. Since the beginning of this school year, I have been working on my most meaningful poem yet, and I’m ready to share it with the world.

I’d like to dedicate this poem to all the teachers who have made a meaningful impact on my life by seeing me, not just my disability, not ignoring my disability, but all of me.

Look at me, teacher,
What do you see?

Do you see my hazel eyes, strong, yet care-worn?
Do you see the lines under my eyes, born of stress and anxiety?
Do you see the dried tears, from a bully or rude teacher?
Do you see my golden-brown hair, hastily swept in a messy ponytail?
Do you see my bright smile, a bit too bright to not be hiding some pain?

Do you see my shoulders, tensed even if I don’t notice it?
Do you see my chest, tightening from the fear of another group project?
Do you see my arms, the skin rough from not having the energy to use lotion?
Do you see my hands and wrists, cramping and spasming from finishing a long writing assignment?
Do you see my legs, hurting from gym class?
Do you see my feet, constantly moving with nervous energy?

Do you see me holding my head in my hands, my neck too weak to support it?
Do you see me listening to you but with my eyes closed, my eyelids too tired to stay open?
Do you see me standing, barely able to stop myself from swaying?
Do you see my messy handwriting, my fingers too weak to hold a pencil correctly?
Do you see me trying to breathe deeply, attempting to control the terror I feel when you said the word “essay”?
Do you see my twirling my wrists and ankles, trying to ease the pain?

Do you see my eyes light up, excited that you’re letting me read my book in class?
Do you see my patience, putting up with the most annoying partners and groups?
Do you see my kindness, lending pens and paper to anyone who needs it?
Do you see my focus, trying to absorb every word you say?
Do you see my intelligence, my hand shooting up with every question?
Do you see my excitement to learn, my pen and paper out at the beginning of each class?
Do you see my love for what you teach, applying it to my own life?

Do you see me?
A person?
A body, mind, and soul?
A heart?

Or do you see something else?
A student ID?
A grade?
A disability?

Tell me, teacher,
What do you see?

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My Overnight School Trip With Hypotonia

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It’s 6:00 in the morning. My alarm goes off. I wake up as usual, but something is different this morning. I try to figure out what’s different, then I remember: We leave for the school trip to Hershey, Pennsylvania today! I get up and get ready as usual, but I make sure to take two ibuprofin pills instead of one to prepare.

I double-check the school website to check what classes I have today. Thank goodness I don’t have gym today! I look for my overnight bag and the garment bag my performance clothes are in, then after a couple minutes of frantic searching, I remember I dropped them off at the school the previous day, as it was required. I put a few more things in the bag I’m taking on the way to the competition that’ll be part of the trip, then I get on the bus to school.

I impatiently sit through my first few classes, then go to chorus, where the teacher reminds us of today’s schedule — leaving after fifth period, stopping at the hotel to change into our performance clothes before going to the competition we’re participating in if there’s time. We rehearse the songs we’ll be singing for the competition. When the bell rings, I go to my locker and grab my jacket before heading to lunch. I eat my food, then read my book until we are released.

I walk to the auditorium where we’re meeting. People start grabbing their overnight bags and garment bags from the room they’re kept in, so I run down there with some of the other students, until we’re told to go back up, so I run back up the stairs. Goodness gracious, my legs hurt so much from standing on the risers and running up and down the stairs and hallways. We go back onto the risers to practice another song, then go to grab our stuff. We stand for a bit in the auditorium lobby, then get on our buses.

After we cross the border into Pennsylvania, we stop at a rest stop and go to the bathroom. As soon as we get back on the bus, the chaperones announce that because of traffic, we’ll be changing into our performance clothes in the bus bathroom. The moving bus. The moving bus with boys and girls. Oh. Boy.

Eventually, it’s my turn to change. It takes twice the amount of time it usually would, because I can’t hold myself upright while the bus is moving due to my disability. We get to the competition site, get into our lines, then warm up. We then go on stage, but upon seeing the risers set up for us, I freeze for a moment. I always stand on the top riser, and the risers at school have a railing along the back, which I usually hold onto while getting on them. But the risers they have set up don’t have railings. And the second I step on, I can feel how shaky the risers are. During the entire performance, I’m focused on not falling.

Afterwards I am in a lot of pain, but things are so rushed trying to get everyone their dinner and getting the orchestra kids to their competition site, so I don’t ask for ibuprofin. We go watch the orchestra perform (after waiting and standing for a very, very long time), then we go back to the hotel. We all shower and change into our pajamas, quickly put away our performance clothes, and go to sleep (finally!) I get only a few hours of sleep from painsomnia.

At 7:00 the next morning, the alarm alerting us to get up goes off. We all get up and get ready, then meet with the rest of the students on the trip. At breakfast, my chaperone stops by my table to give me my allergy and pain meds. I set alarms for every four hours so I know exactly when I can take it next. The teachers in charge give us instructions, telling us to go back to our hotel rooms and prepare for Hershey Park.

We all go upstairs and go through our bags, then we meet with the rest of our group. I’m surprised, because the teacher in charge of the trip told us that we would choose our groups, and that groups would only have people that either like rides or don’t like rides. Apparently she was wrong, because most of the people in my group like rides. I’m absolutely furious, but I calm down during the bus ride.

We get to the park, take attendance, and take a picture with everyone else on the trip, then we go to check in at the first aid station. We find a ride, and everyone goes on but me. I let the chaperone know that I can’t go on any rides because I have hypotonia, and if my body is being moved around too much, I can’t hold my body up and I could get hurt.

I go to wait with the chaperone at the exit. Before we can stop to talk about what we’ll do next, the rest of the group runs to another ride. Sigh. My group decides to go to another ride a bit farther away, so we have to walk a bit to get there. If you have been to Hershey Park, you know how hilly it is there. Walking up slopes is a lot harder for me, so it takes me a bit longer. My chaperone tells me multiple times to hurry up, calling me a “slowpoke.” Double sigh. It’s gonna be a long day. We spend another few hours going on rides. Well, the rest of my group goes on rides.

I wait at the exits, getting more bored and frustrated by the minute, and counting the minutes until I can next take my ibuprofin. Eventually, we go to eat lunch, which is literally the first time we’re sitting since we got to the park since it was raining and the benches are wet. I talk to my friend about how frustrated I am, and she tells me I should suggest we do non-ride activities. Just then, a girl butts in and says, “The whole point of going to Hershey is to go on rides.  Everyone else will be ticked off if you stop them from going on rides. You should just suck it up so everyone else can enjoy the trip.” Talk about ableist.

It starts raining harder, so while a lot of the other kids in my group go on another ride, a few other girls and I go into the arcade. I even help another girl, E, win a teddy bear in a giant claw machine! We go to pick up the kids who were on the ride, then we all go back into the arcade. I go over to a group of kids watching a girl from our group trying to win a Minion in a claw machine. A boy, M, comes over and takes over, and after a few tries, he actually wins a Minion! We go over to another game, and one of my friends, B, wins a stuffed animal as well! Before going back out, B puts her stuffed animal under her shirt, E puts her bear under her jacket, and M wraps his minion, who he has named Stanley, in a poncho. They all go on another ride, so I protect their stuffed animals with my umbrella.

We do this for a few more hours, then we realize we have to go to the award ceremony for the competition. We run to where we think it is, then we realize that we’re in the wrong place, so we run over to where we’re supposed to be. We get there late, and I can barely breathe. We find out that we got second place and our orchestra got first place.

We go back out and do a few more rides, then we go eat dinner. We go to Chocolate World, but we can’t do the factory tour, so we buy souvenirs. We get on the bus, and I’m so exhausted that I can’t hold myself upright anymore. My eyes close partially, my head falls over to the side, and I slouch over. Other people would have thought this looked weird, but because I planned ahead, I sat in a window seat with my friend in the aisle seat blocking everyone else’s view of me. We get back to the hotel, and I’m in so much pain, I can barely walk. I change, but it takes a while. I collapse into bed, but I get almost no sleep because I’m in so much pain.

At 6:00, I give up on sleep and get out of bed. My friend and I change and go downstairs for breakfast. I take my meds, we listen to the teachers’ instructions, then we go back up to our room to pack all of our stuff. We leave a tip and write a thank you note, then move all of our bags outside so the teachers can check our room. One teacher even says our room is the neatest! We get on the bus to go home. After what feels like an eternity of bad jokes and worse movies, we return home, finally ending our trip.

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When I Told My Gym Teacher I'm Disabled

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Gym class is always an… interesting experience for me. (I have some stronger words to describe it but my parents check each post.) When I reveal that I have hypotonia, it generally never ends well. I laugh at the idea of being accepted in gym class or even being put up with. I’ve learned to get used to it; I feel like when you have a disability and everyone starts to accept it, that’s usually when you wake up from the dream. This year, it was even scarier, as I had just moved from middle to high school. But telling the teacher about my disability didn’t go as planned.

I tried to put it off for as long as possible, but since we always start the year off with physical fitness tests, I wasn’t able to procrastinate for that long. Eventually, when we went out on the track to practice for the half mile, I had to tell the teacher (let’s call him Mr. A). So as all the other girls took off running, I pulled Mr. A aside. Here’s how our conversation went:

Me: “Mr. A, I have something I need to tell you. I have hypotonia, a muscle disorder–”

Mr. A: “Yes, I know, I saw your shirt.” (I used my hypotonia awareness shirt as my gym shirt just in case.) “Are there any physical limitations I should know about?”

Me: “I am a lot slower at running. It is harder for me to do push ups and sit ups. Instead of walking half the track and jogging half the track, I may have to walk three-quarters of the track, or even the whole track.”

Mr. A: “Don’t worry about it. I understand if you need to walk; don’t stress about it.”

I walked, or should I say jogged, away completely in shock at how well that went. I figured it was only a matter of time until he got fed up with me and my lack of athletic ability.

About a week later, we were going to go run the half mile for real. The day before, I had been running around like crazy, and I had definitely overexerted myself. My legs and ankles were hurting so bad, I knew I would never be able to run that day. This was the real test: would he be accepting of me, or would he threaten to send me to the dean? I had no choice, so I took a deep breath and walked up to him.

Mr. A: “Everything all right?”

Me: “Mr. A, I’m so sorry but I don’t think I can run–”

Mr. A: “Don’t worry about it, just walk. It’s fine, no stress, OK?”

I was so amazed. There wasn’t even a hint of sarcasm or frustration in his voice. This has never happened to me in the history of gym class. I actually thought I was dreaming! What really astounded me, though, was after we went back in the gym. While we ran the track, the teachers timed us and told us our times. When we sat down, he called all of our names and we yelled out our time. I, obviously, did not get a time since I was walking, so I was trying to figure out what I would say when he called my name. But he saved me the embarrassment — he skipped over my name and just called the next girl on the list. No one noticed.

This proved to me that he actually does care about me, and he’s not going be the kind of teacher who sends me to the dean. He proved to me that I can trust him, that I don’t have to be terrified before each gym class. Mr. A, if you are reading this, I want you to know how much I appreciate the things you’ve done for me. It may not seem like much, but you don’t know how much you helped me out. I am much calmer before gym because I know if something happens, you will have my back.

Even just by casually mentioning that you noticed my shirt, I knew in my heart this year was going to be different. So thank you, Mr. A, for making gym class significantly better than the last three years.

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Thinkstock photo by lzf.

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What My School Day Looks Like as Someone With Hypotonia

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School is not fun for many people, but I have hypotonia and it can be downright hard. Each day leaves me out of energy and in lots of pain.

This is what one school day looks and feels like for me:

6:00 a.m. Getting Ready

My alarm goes off, I groan and reach for my phone, though I accidentally grab a stuffed animal a few times (as a side note, stuffed animals are soft and adorable and make good weapons for those who wake me up). I get up, grab my clothes, and go into the bathroom to change. On my phone I put on a new episode of a show I was too tired to watch the night before and I change while leaning against the wall for balance. I go downstairs and put on socks and shoes and fill my water bottle. If I wake up with pain, I take ibuprofin as well. I go into the bathroom to do my hair while heating up a frozen breakfast, anything, if I know I’ll have time to eat it. If not, I shove belVita breakfast crackers into my mouth while trying to decide what I can do with my hair. Some days, I can put my hair in a pull-thru braid, other days, just brushing my hair and putting it in a low ponytail hurts. I make sure I have everything I need, then I throw on my coat and go to the bus stop. At around 6:50 my bus comes. During the bus ride, I either talk to my friend (if he’s on the bus that day) or I listen to a learning track for a song I’m learning in Girl Scout Chorus.

7:00ish a.m. Arriving at School

First period starts at around 7:30, but the bus drops everyone off at school pretty early. I go to my locker, grab what I need for periods one through four, then go to my friends’ lockers and goof around with them a bit. I head to the girl’s locker room when the 15-minute warning-bell goes off because I need an extra minute to change for Physical Education since I need to lean against the lockers for balance and sit down to put on my shoes.

7:27 a.m. Physical Education

I go into the gym and sit in my assigned spot while fidgeting with my bracelet. Mr. A, my awesome gym teacher, comes in and jokes around a bunch, which puts me at ease, even though I’m still a bit nervous because it’s PE. The other kids in my class are all girls, but they are sporty girls. I’m the disabled girl who loathes sports with all her heart and end up in the class with super sporty, super competitive girls. We are playing volleyball. In teams. Against other people. Yay. I can serve pretty well, and in theory, I should be able to bump and set the ball since I did well practicing. Important part of this sentence being “in theory.” My reflexes stink, so I have a hard time moving quickly enough, and when I need to bump the ball I set it, and vice versa (thanks, body). My teammates seem supportive at the beginning of class, but when they say, “It’s fine,” through gritted teeth after I miss the ball again, I feel they are getting sick of me. I have to resist the urge to yell at one of them, who says, “Good job!” every single time I so much as touch the ball. I know she means well, but it’s still super annoying. I’m so over volleyball. We go back into the locker room to change. I have an extra second so I sit on the bench by my gym locker and take a sip of water from my water bottle. My arms are throbbing. The bell rings and I climb up two flights of stairs to my next class.

8:18 a.m. Science

I take down my chair and sit at my table while talking with B, who’s at my table and in Girl Scout Chorus with me. We talk about how excited I am for Girl Scout Chorus rehearsal that night. We do our “Do Now” questions and put the homework answers on the board. I’m one of the first people to put my answers up, and some days, I’m one of the only people to put up the answers. The teacher opens up a Power Point about asexual reproduction — a few boys in the back of the class giggle — and we take notes. Three. Whole. Pages. Of. Notes. I’m only allowed to type written assignments, so I write these notes by hand. We do a few worksheets on the phases of mitosis (when will I ever need this information in real life?) while I sneak sips of water from my water bottle and wait for the period to end. My wrists, hands, and fingers hurt so much from all the writing. The bell finally rings, and I pick up my backpack and go to my next class.

9:04 a.m. Food Investigations

Oh how I love Food Investigations! The classroom has four mini-kitchens. When we come in, we sit at tables in the classroom with our kitchen group. I love how small the class is, only 16 kids in the whole class. Plus it’s super hands-on since we learn about how stuff rises by baking muffins, for example. Today, since it’s close to Valentine’s, we are making chocolate covered pretzels. Ms. N is the best teacher ever. We microwaved chocolate chips and dipped the pretzel sticks, then we rolled them in toppings. Ms. N put out mini M&Ms, peanut butter chips, peanuts, sprinkles and white chocolate. We had to leave them to dry, but they tasted awesome. Standing for almost the entire 42-minute long period causes my legs and feet to hurt a bit, but it’s still super fun. Food Investigations is definitely my favorite class.

9:50 a.m. Chorus

I walk into the auditorium, which is very close to Food Investigations, and sit down. One of my friends, R, runs in panting and annoyed I got there first, then sits next to me. He always tries to race me, even though he knows half of the time I will “win” since my class is closer than his. My other friend, S, comes in and sits with me and R. S and I talk about an upcoming overnight trip the chorus is going on. I’m super nervous since last year’s Washington D.C. trip didn’t go very well. I’m especially anxious about how we might need to go on escalators, since it’s not safe for me to go on escalators. Ms. L, the chorus teacher, calls everyone onto the risers. For 20 minutes we practice a few pages of, “All Too Soon,” a song by Stephen Hatfield that we’ve been working on. Ms. L tells us we’re going to have a singing test, where she listens to us sing a part of a song to see how well we know it. We split into our “singing test groups” and start practicing. A member of our group, who happens to be the only bass in our group, is absent so we need to “borrow” a boy from another group. The other boys in our group keep getting distracted, and one is purposely trying to annoy me, but we get it done. We agree to do our singing test the next day, in the hopes our missing group member will be here then. My legs are hurting so much from all the standing. The bell rings, R walks with me to my locker so I can get everything I need for periods five through nine, then I head up to the cafeteria.

10:36 a.m. Lunch

Yup, you read that right, I have lunch at 10:36. I’m not even in the earliest lunch period! I put down my backpack and my binders at my lunch table, then I get up to buy lunch. Today is chicken nugget day, but since pizza is also served, I buy that instead. I go sit down at my table and eat my lunch. This is one of the few periods where I get to rest a little. I refill my water bottle at the cool water-bottle-filling-station my school has. I take out any homework I didn’t have the energy to finish the night before. Once I finish, I take out my book and read for a bit. We’re released a few minutes before the bell rings, and I go up a flight of stairs for my next class.

11:22 a.m. English

We have a vocabulary quiz today, so we study for a few minutes. We take the quiz which is really short and easy. I try to read more of my book while the other students are finishing, but I’m in a lot of pain, so it’s hard to focus. After the quiz is collected, we are given a poem. We will soon start reading the novella “Of Mice and Men” by John Steinbeck, and this is the poem the title was taken from. We annotate it and write lots and lots of notes. What is it with teachers and notes? We finish up right before the bell rings. I go down a few sets of stairs to my next class.

12:08 p.m. Social Studies

Oh Social Studies, the class I dread. It’s not the notes, Ms. T prints them out and gives them to everyone. It’s not the work, it’s not very hard. It’s not the teacher, Ms. T is pretty nice (aside from the time she refused to let me use my accommodations). It’s the kids. They are silly and joke around and don’t really do the work, making group work impossible. Although some “compliment” me often, I get the feeling they aren’t very sincere (who compliments someone by saying their shirt is flowery?). Today we have a substitute teacher. Lord help us all. We have a reading on Japan with a few questions, but it doesn’t take very long. I love learning about Japan, the masks the samurai used, the tea cups and the gardens are beautiful. I turn in my papers and read more of my book until the bell rings.

​12:54 p.m. Spanish

I enter the classroom and sit in my seat, which happens to be one row from the windows. Everybody, including me, wants to open the windows, but a boy in the first row, M, is whining about being cold while being the only person in the room not wearing long sleeves. I’m exhausted and in pain so I’m a bit irritable, so the next time M complains “It’s soooo cold!” I say, “Said the boy wearing a t-shirt and shorts!” Everybody looks at me, but I just cross my arms and roll my eyes. Class starts, we have a test on reflexive verbs and daily routine vocabulary. The pain in my ankles and feet makes it super hard to think in English, much less Spanish. Nevertheless, I finish my test and turn it in. I open up my book again, but it takes a few minutes to just get through one page. Even the effort to focus my eyes on the words of my favorite book seems like too much to handle right now. As the bell rings, I prepare myself for the last and most mentally draining class of the day.

1:40 p.m. Geometry Honors a.k.a. Math

Yup, I’m in 9th grade, but while others are in Algebra, I’m a grade ahead and honors. And as you can see, I love to brag about it, especially when so many people seem to hate math. Anyway, in math, we are doing proofs. It requires a lot of logic, but that’s why I love it so much. But of course, proofs involve writing. Lots. And lots. Of writing. I’m exhausted, in pain, and questioning why I didn’t give the school nurse ibuprofin so I could take it if I need to. Every minute feels like hours as I wait for the day to end. Finally, the bell signaling the end of the school-day rings.

2:25 p.m. Leaving School

I walk all the way down to the other end of the hall where my locker is. I take out the binders I need for my homework, put on my coat, and go to the bus. On the way home, I turn on my phone and check my texts, email, Twitter, and The Mighty.

2:45 p.m. Getting Home

Once I get home, I eat a snack, take ibuprofin, then take my binders and homework upstairs into my bedroom. I’m so tired I can barely hold my eyelids open, but I have no choice. The rest of the world expects me to be “normal,” forcing me to do things I know I can’t do. I should be taking a nap before Girl Scout (GS) Chorus, but instead I’m rushing to do as much homework as possible while lying down because I don’t have the strength to hold my head up or even sit up straight. Eventually I give up trying, and I go back downstairs to refill my water bottle and make sure my GS Chorus permission slips are filled out. I put back on my socks and shoes and wait for my mom to bring me to GS Chorus.

4:00 p.m. Leaving for Girl Scout Chorus

I love Girl Scout Chorus. I run out to the car when my mom gets home to bring me to rehearsal. I love having the chance to talk to my mom in the car, and she loves trapping me in the car so she can point out microscopic wrinkles in my shirt/jeans/shoes/binder/pencil/water bottle (love you, mom, but you know it’s true). We get there super early, and I’m usually one of the first ones there.

4:30 p.m. Girl Scout Chorus Rehearsal

My favorite part of the week, Girl Scout Chorus rehearsal! I get to see and talk with some of my best friends. It’s so much fun being with people who don’t judge me and love me for being my silly, weirdo self. Even better, most of the other chorus members (not counting the new girls) know I’m disabled. When I told them my deepest secret, they listened and didn’t say anything annoying like, “You don’t look disabled!” They actually listen. One time, I was exhausted and in pain and I confided this in one of the girls in the chorus, and before I left, she told me she hoped I felt better and gave me a hug. These are girls who I can talk to without feeling like a socially awkward idiot. J and C, the directors of the chorus, are super sweet, really peppy, and love to be silly with us. Plus, since they’re teachers, they have lots of hilarious stories to tell us. We all have our own inside jokes, and it’s one of the only places where I feel like I belong. We start out the rehearsal by doing warm-ups in a circle. We then go to our seats, and the directors brief us on their plans for future rehearsals and performances. We work for a while on “God Bless America,” because we will be singing it during seventh-inning stretch during a Mets game (so cool!). We then work on “He’s Got the Whole World in His Hands” (I think that’s the title) because we will be performing at an Interfaith Service thingy. After that, we practice “Let There Be Peace On Earth,” the most hated song by the altos since the harmonies are so tricky. Since two other girls and I know the harmonies well, the directors ask us to stand up in the front to help the other girls. We finish up by going over the new Girl Scout anthem, “Watch Me Shine.” It’s super fun, and even though I’m exhausted and in lots of pain, I fell really good.

6:30 p.m. Leaving Chorus Rehearsal

The saddest part of my day is when I go home. I go out to my mom’s car and we drive home. Usually, we’ll pop into our local pharmacy to grab stuff we need. I need ice cream. What if my throat burns into ashes because I don’t have something cold?

7:00 p.m. Arriving Home and Getting Ready for Bed

Once I get home, I make and eat a frozen dinner and eat my ice cream, then I take my vitamins and allergy medicine (and possibly ibuprofin). I try to make it clear at this point no chores are going to happen without someone losing their head, but occasionally, I am forced to take garbage out, do the dishes or do laundry. I go upstairs and change into my pajamas, clean my glasses and put lotion on.

8:00 p.m. Going to sleep

Yes, I know it seems ridiculous that a teenager goes to bed at 8:00, but to be honest, that is late for me. I usually spend most of my life outside of school in my bedroom, but I go into my room with the intent of sleeping at around 7:00 or 7:30. I have to wake up at 6 a.m. (thanks school district!) so by this time of the day, I’m done. I almost literally collapse in bed, cuddle my stuffed cat (creatively named “Kitty”) and after 30 minutes to an hour of tossing and turning and trying to quiet my brain, I eventually fall asleep, only to do it all over again tomorrow.

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