Words for the World

We had to do a free-verse poem in school inspired by Dr. Martin Luther King Jr.’s “I Have a Dream” speech. Here is mine:

My dream today

Whirls through my head

Lives rent-free

In my mind

Words

Light, soft

Pleasant.

Words

Dark. Thunderous. Cruel.

Can bring tears

Can bring smiles

My dream is

For words

To escape.

To bring levity

Or gravity 

Into the world.

Words

can be just what people need.

Words

Can rip, can pull someone apart

Words

Can put the pieces back together. 

My dream

is for the positivity

of words

For the world.

For people to

Use care with their words.

Eighth Grade, Here I Come

 School starts tomorrow for my district. I am really nervous and kind of excited. I enjoy summer because, yes, I get tired of school, I love spending time with my family, and vacations are awesome, etc. But for me, there are several more reasons why I love summer. People who don’t have physical disabilities might not think about these things, but here they are:

I fall down less during summer. (If you knew how much I fall down during the school year, you’d know why this affects me so much.) I’m probably less active, and usually I’m with my parents whenever we go somewhere and they hold my hand. (Also, my legs are so clear during summer! By this I mean I usually don’t get bruises or scrapes because I don’t fall.)

I don’t get insensitive comments or questions about my legs or the “Why do you walk so weird?” types of questions. Mostly because the only kids I interact with during summertime is my sister and my friends.

My legs don’t get as tired (unless I’ve had PT that day) and (usually) they don’t hurt as much. My school is a pretty big school, and that means I have to walk a lot. Then my pain, which is already bad, gets worse. Yuck!

Anyway, I’m one of those nerdy, dorky kids who loves to participate in classes. I just really enjoy learning. The parts of the day I struggle with are the in-between parts—getting to classes, going to the nurse’s office, PE, and recess (although we don’t have that in middle school, thank goodness). 

Here are some positives about this year:

1) I get to take advanced classes for high-school credit even though I’m in eighth grade.

2) NO PE!!! (How this happened is that the librarian posted a link to apply for a library student aide position that would take the place of your elective. I signed up because I love to read and I love to help people. Because of my IEP, I got to not take PE and get to be a library aide instead.)

3) I get to take lots of classes with my friends. 

4) I don’t have to take the stairs at school.

5) Eighth-graders get a lot of privileges that the younger grades don’t get.

I am THRILLED about not having to take PE. It is one of my main struggles and one of the places I get bullied most. Last year, I had a really good PE teacher and I was with one of my best friends, but it was still extremely difficult.

Here are some negatives:

1) Taking the elevator. I am grateful that I don’t have to take the stairs, but I got a lot of comments from teachers in the past like, “Why are you taking this elevator?” and “You don’t look handicapped.” I just am not looking forward to dealing with that.

2) A lot of walking.

3) I might fall down a lot more.

Overall though, I am excited about starting school again and I do not mean to sound bitter. School is just hard sometimes for reasons that are not the classes. For all those of you starting school, good luck!! Best wishes for a great year!

A Special Bond I Didn’t Know I Could Have

 

For those of you who are pet lovers out there, or for those that have a pet of their own, you know how important it is to have a bond with that pet. I own an adorable 11-year-old beagle named Milo. We rescued him from a beagle rescue, where the founder of the rescue found Milo abandoned with a broken pelvis. Anyway, we adopted Milo when I was about six. Let me just say that that was probably a miracle in itself. In addition to sensory issues, I have pretty severe anxiety, which was even worse when I was younger. I did not want a dog to lick me or bite me—or even worse than that for me was the fear of a dog barking. I could not function when a dog barked. The noise is scary, yes, to younger kids, but to kids who grew up around dogs, hearing a bark is just a normal occurrence. To me, the bark of a dog was torture to my ears. Anyway, considering all of my fears and issues with dogs, I consider it a miracle that I got used to Milo and was even happy that we adopted him.

Now, I am so glad we have Milo. Actually, I got rid of my “I don’t want a dog around” attitude pretty much as soon as we got Milo home (we fostered him for a month before we adopted him) but anyway, Milo has helped me get used to dogs so much—though I am still a little scared around bigger dogs. When I was younger and we first got Milo, though, it was an achievement just for me to pet him. Therefore, my sister (who was the one who wanted a dog in the first place) became Milo’s main caretaker and his favorite in the family. Now, I wish I had tried a little harder with him, but my anxiety was really bad back then. 

 I help out with Milo more now and I adore him and love him so much. One thing I had never done though (mostly due to my cerebral palsy and unsteady balance) was pick Milo up. I wanted to. I was sort of jealous of my sister because she got to hold Milo in her arms and hug him and kiss him all she wanted, because she could carry him. I had enough trouble balancing and walking by myself, much less add a sixteen-to-eighteen pound dog to the load. I was terrified at the thought of lifting Milo and then dropping him if I lost my balance. I did think that picking Milo up would add to the bond between us because I could hold him close and he would learn that I was a secure place (for lack of better words). Milo and I have a pretty good relationship. I am probably second to my sister, as far as his favorite family member goes. And I was fine with that and I understood why my sister was Milo’s favorite; she had been comfortable with him and therefore had spent more time with him when we were younger, whereas I had not. However, carrying Milo was something I really wanted to do. I wanted Milo to know that he could depend on me and I would take care of him.

So this past weekend we were at my grandparents’ house. They are going to move soon and so we were helping them. The new owners built a gate and fence at my grandparents’ current house, but it had some gaps in it that Milo could potentially escape through, so one of us had to go outside with him and watch him whenever he had to use the bathroom. (Milo is pretty small for a beagle, so that was why he could fit through the gap.) I went outside with my sister and Milo once and tried to get my sister to teach me how to carry Milo. She corrected the position of my hands, and then told me to lift him. We were both sitting down in the gazebo, not standing up, so it might have been harder, but neither of us thought of that. I tried to lift Milo like she said, but he was heavier than I expected. I managed to get his front legs off the ground, but not his hind legs. I was really frustrated and upset with myself, and my sister said, “It just looks like he’s too heavy physically for you to lift him.” I might have been okay had she not said “physically.” I am aware of my physical challenges, but they really bug me sometimes. I was admittedly a little sarcastic with her, which happens sometimes when I’m upset. I am not a sarcastic person otherwise. Anyway, I was frustrated and sad that because of my physical shortcomings, I might never get to have a bond with Milo to the extent that I wanted. The next day, however, my sister, who usually accompanied Milo outside throughout the weekend, was helping my grandfather with something, so I volunteered to go outside with Milo. I was nervous because all I thought I could do if he tried to escape was grab him by his harness. (I had done that and had effectively stopped him from escaping once so far on this trip.) So Milo and I went outside, and since he is a beagle and beagles love to follow their noses, Milo was sniffing something pretty intently and walked over to the gap in the gate. He didn’t try to escape, just stuck his nose through the fence. It was really hot and I was sweating. After Milo used the bathroom and I let him roam around for about ten minutes, I was ready to go inside—but Milo wasn’t. I made his favorite sound, trying to get him to come to me, but he wouldn’t. I whistled and clapped my hands and called, “Milo, come! Come here, Milo!” to no response. I gritted my teeth, gently grabbed Milo by the harness, and attempted to drag him back inside (his harness wraps around his middle, so when someone drags him it doesn’t make him choke) but I knew I could not drag him all the way back. My back was already starting to hurt from bending over. So I put one of my hands below Milo’s chest, the other around his butt, and tried to lift him. It took me two tries to get his whole body up in the air, but I did it. I was overjoyed that I actually lifted him, but now came the hard part—walking with him in my arms. My grandparents’ land is pretty hilly, so it was difficult to walk for me anyway. But I went really slowly and carried Milo back to the house and gently set him in his kennel. When I told my parents, they were proud of me because I don’t really think they expected me to carry him—which was okay, because I really didn’t either! I had achieved a milestone! I had carried one of the most precious weights I would ever lift. It was a triumph for me, because I thought that my CP might stop me from ever being able to hold my dog in my arms and lift him up. That turned out not to be true.

Glass

You’re the reason I have walls

Are you gonna care enough

To tear them down?

I’m broken on the inside

Had to turn my heart to stone so

You couldn’t get through

In the end,

Will you betray me….

If my emotions don’t 

betray me first

Had to seal myself off so I don’t get hurt.

In the end, you’re like everyone else 

You say you want to know me

But when you get deep inside

Will you just

back off and hide? 

When I start to trust you

Will you let me down again?

I saw love

I saw peace

In blue eyes once

My trust was theirs,

though they could

Shatter me like glass.

But something isn’t beautiful

Because it lasts.

You gotta prove yourself to me

Will you just be

One in the crowd?

Will I have to deal with

your mockery,

Shut off the pain of your laughs

If you really love me

You can shatter me like glass

But

Something isn’t beautiful

Because it lasts.

If I really trust you

Will you let me down again? 

Break my heart

with the pain of your laughs

Is it possible to love you

without splintering apart?

If I just broke

here and now

I’d be up above

Staring into blue

Blue skies,

Blue eyes

that love me so much.

I want them

To be with me.

I have you

Instead.

But something isn’t beautiful

Because it lasts

So prove yourself to me

Or shatter me like glass

I’ll lie to myself, say

I’m not hurt

Wonder how long

I’ll believe in that?

But something isn’t beautiful 

Because it lasts.

The Useless Helper

 Do you ever feel like you’re useless? Maybe you do. But you might not feel that way as frequently as I do. 

About five years ago—the summer before fourth grade—I woke up with horrible pain in my knees. It hurt to walk. When I was younger—say, four to nine years old or maybe even when I was a toddler; I don’t remember—I had hamstrings that were so tight it hurt all over my legs, my thighs especially. But it always went away by the next day. Worst case back then was that I took some Tylenol or ibuprofen and I got pain relief. This kind of pain was different. It was stabbing pain. My knees throbbed no matter what I was doing. My mom ended up calling my physical therapist after I complained of pain for two days straight. He said it was probably just a growth spurt.

Five years later—after at least six different medications, countless doctors, and an (inaccurate) diagnosis of fibromyalgia—here I am. The pain is manageable on some days, and nearly unbearable on others. The fact is, I don’t have the kind of time to sit around and nurse my aching hips. Or at least, I’m too stubborn to do that.

I am blessed with an understanding family who doesn’t pressure me to do things when I’m hurting. However, my pride kicks in. For example, I was helping out at my Nana’s garage sale and everyone was active, setting up folding tables, carrying boxes to different tables, and generally rearranging things. For the first thirty minutes of this, I was active, too, helping to organize the table that my sister and I were selling our stuff at. After that time, though, I was exhausted—and really, really frustrated. Most kids my age can run for a long time without getting super tired, much less move some things around at a garage sale. 

I was the first to sit down on a lawn chair, guzzling from a water bottle, grateful that my exhausted, aching feet were getting a break. Then I looked around at my family members, who were all scurrying around, effortlessly (at least, that’s what it seemed like) carrying boxes and things like that—all physical things that required legs that were “fully charged”, aka not super tired like mine were.

I felt so useless sitting in that chair. I was angry and I resented that my legs couldn’t cooperate for what I considered simple activities—especially since I had taken my medicine that morning, which admittedly, I’m not always so great about. I also resented that I didn’t get to experience a so-called “normal” childhood. As much as I hate that word—“normal”—I do feel like it has a point. But mostly, I was frustrated because the rest of my family seemed to not even get tired as they helped, while I probably sat in that lawn chair for longer than I had helped! It was annoying. 

Not to mention that it happened again! I was cleaning out my grandpa’s thousands of CDs (literally I have never seen that many CDs in all my life!) and putting them in boxes. There were so many that I maybe was boxing for an hour. I’m not complaining here, because I really like to help my family. I’m just saying there were tons! I was getting tired because the CDs were on a high shelf, which meant I had to stand up as I reached for them to put them in a box. My legs were shaking, which they do when they’re tired. (I have learned to read the signs.) My sister noticed and told me to go sit down; she would finish packing my grandpa’s CDs. It was a sweet offer, it really was. But I got mad (not really at her, but at my legs), and told her I was fine. I was not trying to be dishonest. I was trying to save my pride, which was a bit bruised though my sister had offered in the sweetest way possible. I just wished I could complete a chore without my legs giving out. Is that too much to ask? If I sound bitter, I’m sorry. I know how fortunate I am. I just get exasperated because I feel like I’m useless—no matter how many times my family tells me I’m not.

Reflection

 When you look in the mirror…. what do you see?

Some answers to this might be your hair, long or short, your height, tall or short, or maybe your eyes, whether you think they’re an interesting color or big, whatever the reason. Each of us see different things when we look in the mirror. Do we see what we consider our “flaws” or the features that we are proud of?

This past weekend, I was out shopping for clothes when I passed by a large mirror. I stopped, a bit in surprise and a little self-consciously. I had noticed my legs and the way they twisted when I walked.

Believe me, I was not surprised that my feet were turned in. I’m aware that I walk like that usually, except for when I’m unusually loose or if I’m thinking about my feet. But for some reason, on this particular shopping trip, it hit me that this is how people might see me. A dorky-looking (which I’m not ashamed of) little girl with twisted-in feet. To be clear, this is not something to be ashamed of. I have a disability, a difference, and that is perfectly okay! All I’m saying is that right then I felt a little self-conscious and a little too aware of how I might have been perceived. 

This might have bothered me for two reasons—one, because I work hard at physical therapy—until I’m exhausted, even—but as we all know, hard work doesn’t always lead to perfection. I am unbelievably appreciative of my circumstances, but at the store looking in that mirror I was a little depressed that my hard work hadn’t paid off quite as much as I had wanted it to. I know I am going to have to work hard, and I accept that. But I was bothered anyway.

The second reason that I was bothered is because I frequently make the mistake that a mirror is an accurate perception of what others see. This is not true. Mirrors cannot show our hardships and our struggles, our triumphs or our joys or our personalities, or our defining attributes. A mirror can only show what’s on the outside, and maybe not even an accurate depiction of that. The thing is, sometimes when we look in mirrors, we only see what we think of as our flaws.

“Oh, is my hair messed up?”

“Ugh, my face looks weird.”

But mirrors can also show the features that we like—whether you have “perfect” lips or sparkling eyes or whatever else. 

So do you choose to focus on the good or the bad? Because here’s the thing—because mirrors can only show what’s on the outside, mirrors are actually very limited if you think of it that way. And if others choose to see only what’s on the outside of a person—not their personalities or passions—then those people are pretty limited, too.

If people choose to “see” me based on my legs, then that is their choice and their problem. And they really don’t see me at all. They don’t see all I’ve gone through. They don’t see my accomplishments or my sorrows. The only thing they see—or choose to see—is legs and feet that turn in a little. Wow. What a limited view.

So how do you see yourself? 

The next time you need to reflect on yourself, don’t look in a mirror! No matter how much we all rely on it, a mirror can only show us so much!

Why I Love Fireworks (And Why I Don’t)

 

Happy July 4th!! Happy birthday, America! In honor of the holiday, you may have celebrated. Maybe that included a barbecue or brunch with family. Maybe you watched movies. Most likely, you also either purchased or saw fireworks. 

Fireworks are big and beautiful and sparkly. They go off with a boom that signals you that a firework is coming. No big deal, right? Just a signature sound. If you think that, your experience is oh-so-different than mine. As a person with SPD (sensory processing disorder), that sound is not far off from torture. I think my dog and I are in total agreement. (He hates fireworks.) Fireworks are so pretty, but without headphones, the noise would make me cower and hold my ear closed with my finger and/or shoulder. I love the fireworks, but I can only sit outside and watch for a few minutes before the sound overwhelms me—sometimes even with headphones on. I always feel like I’m spoiling the fun when I say I’m ready to go inside. 

To solve this problem, my family gets sparklers that don’t make any sound. They’re pretty and they don’t make noise. But when the sparkler lights on fire and makes a flash, I guess I either expect it to make noise or burn my hands. (I almost burned my shirt once.) In spite of my sensory problems, I enjoy waving sparklers around my backyard and celebrating the Fourth of July.

The birth of America is really special, and there are different ways to celebrate it. Maybe fireworks aren’t for me, but that’s okay. There are plenty of things that I can do to celebrate.