Please teach your kids

 

“It is time for parents to teach young people early on that in diversity there is beauty and there is strength.”

-Maya Angelou

Kids say the darnest things. Kids can be so sweet, so innocent, and so accepting of others. But they can also be brutally honest, rude at times, and not have a filter on what they say.
Looking slightly different from most, I’ve had a few too many experiences with rude kids and tend to avoid small children. Not that I have anything against little kids, they can be adorable! But unless I know the parents aka how they’ve been raised, I’m not super comfortable with them.

Every year for Halloween, my work hands out candy to a day care center. Newborns, toddlers, moms, and other helpers parade around the building, showing off their costumes and collecting candy! It is so cute to watch all the little ones come through the hallways! 

As the kids paraded around this year, my co-workers and I handed out candy, commenting on each costume. As I was handing out candy, a girl around 4 years old looked at me and asked me “Why do you look like that? Why do you look weird? What’s wrong with your face?” She repeated this over and over. I would’ve understood if I had something on my face or was wearing a mask but I wasn’t. I was wearing my glasses and a headband, nothing too out of the ordinary.

Other kids were gathered around me waiting for candy and the parade was still going on so I figured she would just follow the group but instead she stayed near me, repeating her question. I did not mean to ignore her question, it just didn’t seem like the time to answer it. Plus, shouldn’t that be something a parent deals with?!

After giving her candy and commenting on her pretty costume, she left with the parade of kids. I heard her echoing down the hallway asking my co-workers “What’s wrong with that girl’s face?” There’s nothing quite like being made to feel insecure about myself by a 4-year-old!

A multitude of thoughts went through my mind that afternoon but one that kept popping into my head was how did this child not know any better? Did anyone ever take time to explain disabilities or special needs individuals to her?! I get being curious and kids wanting to learn but there is a fine between curiosity and being rude/ignorant. Please teach your kids that! 

don't stare

The next day, my co-worker and I were discussing what happened and how important it is to teach your kids. Teach them to be aware of the fact that some people may look or act differently from them. Teach them about individuals who are disabled, that we are people just like you. Teach them that it is okay to ask questions but sometimes  when you’re unsure of something, especially when it comes to dealing with people, just be kind and ask later. 

On Halloween night, I handed out candy at my house and there were kids who definitely stared at my face with puzzled looks. But despite their curiosity, they were kind and respectful.

I understand staring, that’s just something kids do but teach them how to react, educate them as much as possible. Kids are the future. 

“We cannot always build the future for our youth, but we can build our youth for the future.” 
― Franklin D. Roosevelt

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It’s the little things in life

“Find beauty in the simple things”

-Unknown

Throughout life, I’ve found that sometimes the smallest things are the sweetest. Those moments that force us to stop and smile. Or the little things in life we take for granted like breathing in a cool breeze, seeing the sunset, or being able to swallow your food.

Lately, I am very grateful for this; to eat, drink, and swallow. Not being able to swallow or having something lodged in your throat isn’t very pleasant. As a result of childhood cancer and too much radiation therapy , I have many physical disabilities. Although most of them I can easily deal with them, one in particular has the tendency to cause issues every now and then.One side of my throat is paralyzed which forces me to eat slower than most and to make sure I chew well. After getting food stuck in my throat several times and having it surgically removed, I had another procedure to expand my esophagus.

Well flash forward a couple of years, I still take my time eating and sometimes have difficulty swallowing but usually taking a short walk or putting my hands above my head move things around enough for the food to go down correctly.

Last weekend, I went to the renaissance faire with my friends. It was my first time at a ren faire and it was so much fun! As my friend said best “we had a wonderful time minus a couple hiccups!”

For lunch, I had a chicken kabob, chicken on a stick, and it wasn’t very easy to eat or cut into pieces. So, I tried tearing it apart and thought I had done a pretty good job but guess not good enough. With the first bite, I quickly felt a huge piece of chicken sliding into my throat before it was properly chewed. Immediately, I grabbed my friend and went to the bathroom in hopes that I could cough the chicken up.  However, the chicken never came up. It was lodged in my throat and I wasn’t able to eat or drink without it coming right back up. As I mentioned, this had happened to me before and I wasn’t too worried. Since my esophagus had been stretched, maybe the chicken would slide down to my stomach as I walk around. That was a poor assumption.

After spending several hours exploring the grounds, having fun with my friends and going to the bathroom every now and then to try throwing up the chicken, I did what every mature 28-year-old does, call my mom for help. My stomach felt very irritated, kind of like when you drink too much water and your stomach wants to explode. Having experienced this before, I knew this feeling wasn’t a good sign. When my mom arrived, she convinced me to go the ER. So a great day with friends turned into an exciting evening at the ER.

Before going straight to surgically removing the chicken, the nurses gave me a muscle relaxant to calm my throat and stomach muscles with the hopes that any built up tension would disappear and would release the food. Usually this doesn’t work but it did this time around, although it took a while to take effect. About 20 minutes after taking the medicine with no food coming up but still not being able to swallow. I went to get X-rays for surgery. Just as the technician was helping me get situated, I felt it coming and immediately covered my mouth as she grabbed the throw up bin. Out came a huge strip of chicken, fully intact! It was disgusting but also pretty impressive, no wonder I couldn’t cough it up all day.  I felt so relieved and a million times better. And the best part was I didn’t have to go through another surgery, even if it was only a minor one. (that would have been surgery 15, not that anyone is counting)

After returning to my room and seeing what I threw up, a nurse gave me water just to make sure it would stay down this time and it did! After not drinking for hours, that was the best water I’ve tasted in a long time! Then, they gave me graham crackers and it was like a little slice of heaven! My empty and irritated stomach started to feel normal. It was so great to swallow again! What a wonderful thing! I ate so much the next day, it was amazing to be able to swallow.

It made me think how we take something as simple as swallowing for granted. On a daily basis, how many times do you actually think about swallowing? For the majority of people, swallowing is just a natural function of the body like breathing. But have you ever stopped to think how awesome it is to swallow? How awesome it is to breath? How lucky I am to be able to swallow, to be able to enjoy the taste of food, to be able to breath on my own, and to live everyday.

simplethings

“The power of finding beauty in the humblest things

makes home happy and life lovely”

-Louisa May Alcott

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Ignorance is bliss…and annoying

“Nothing in the world is more dangerous than sincere ignorance and conscientious stupidity”

-Martin Luther King Jr.

 

Traveling can be such a pain. I love seeing new places and meeting new people but traveling is exhausting. Once you get to your final destination, all the hustle and bustle of traveling seems worth it but when you’re in the moment, traveling can seem like anything but fun.

Having lived in Pittsburgh on my own for a semester, I used to fly home quite often and actually had it down to an art. The people who drove me to the airport would help me to get checked in on my flight and would request a wheelchair for me which is so much easier instead of struggling to walk through the airport with my less than perfect balance. Once a wheelchair arrived, an airport employee would take me through security and straight to my gate. Having that treatment made traveling seem like a piece of cake, it was so simple!

 

Although being pushed around in a wheelchair made everything less stressful, I’m not the biggest fan of the idea. Using a wheelchair or any device to help with my walking is something I avoid at all possible costs. It’s not that I have anything against wheelchairs, walkers, scooters, etc, I’m just too stubborn to use one on a regular basis. Even in college, using a scooter was a little shot to my pride but it made getting around campus so much easier and gave me independence.

 

Despite my hesitations, I have learned that it’s easier to use a wheelchair in an airport instead of dealing with my shaky legs, whether I’m traveling by myself or with somebody. So when flying to Michigan last week to visit family, I used a wheelchair to navigate through the airport. After we made our way through security, we stopped to grab something to eat before heading to the flight gate. However, a problem we ran into was trying to fit this massive wheelchair into the eating areas just to order something. The register was tucked back in a narrow corner with tables and chairs on one side and a counter on the other. Barely one person with a suitcase could fit through, let alone one of the airport’s wheelchairs. I understand restaurants at airports are limited in space to work with and probably have to follow certain regulations due to security but some of the places were impossible to squeeze a wheelchair into; it’s not the difficult to make an area wide enough for a wheelchair and at least another person to stand side by side. Sometimes I wish everyone was forced to experience what it is like to be physically disabled and then people might see firsthand how inaccessible the world is. Yes, there are ADA regulations and requirements but most able-bodied people don’t comply with these rules because it does not directly affect them or it costs too much money to make it more accessible.

 

After struggling to find a wide enough area to fit into the line, we finally made it back to the register. As i was waiting for my mom to order the food, a woman came up to the chair and in a slightly condescending voice (although she probably had kind intentions), she went on to tell me what a beautiful girl I was and how pretty my dress was.

This was all very nice to hear and personally I really liked my dress too but her tone of voice was not appreciated. It was very obvious that she saw the wheelchair, my slightly different facial expressions and assumed I must be mentally or developmentally disabled. Although I wanted to say something to her about making such an ignorant assumption, I smiled sweetly and replied “Thank you, that’s so kind of you to say”.

After placing our order and knowing exactly what was happening, my mom turned around, reiterating what I had said to the woman and backed the wheelchair out of the tight area.

What gives people the right to assume things like that?! I was just sitting in the wheelchair, minding my own business waiting for my mom to place the order because I could not reach the counter top and all of a sudden this women decides to come up to me, assuming I’m mentally disabled. Just because I was in a wheelchair and look somewhat different from you, does not mean I’m mentally disabled. A wheelchair should tell you I have trouble walking or am not able to walk, that’s it. Making any other assumption about me being mentally disabled insults my intelligence and what I’ve accomplished in life. The woman probably thought talking to me was a nice gesture or maybe she was making small talk but it came off rude and made me feel very self-conscious, depressed, and angry.

Nothing irritates me more than narrow-minded, uneducated people like that who make assumptions based on their limited knowledge. Not all people with disabilities are the same. So next time you see someone with a handicap or disability, please don’t make an assumption about their disability, don’t talk down to them or treat them like a two-year old, rather treat them with respect, like you would want to be treated.

 

“You are not entitled to your opinion. You’re entitled to your informed opinion. No one is entitled to be ignorant”

-Harlan Ellison

 

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A new look at beauty

“Everything has beauty but not everyone sees it”

-Confucius

Lately I’ve found myself thinking about what the definition of beautiful really is. The world is full of beauty but each of us seems to have a different idea or perspective on what beauty is.

I used to compare myself all the time to people based on how they looked and what I judged to be beautiful. But both age and experience has changed my opinion of what beautiful really means. To me, what makes a person beautiful depends on how they treat others and their actions, not their appearance. Beauty is not in what the eye sees but rather what the heart feels and how it speaks to our soul.

Earlier this morning, while trying to watch the sunrise, although it was very cloudy, I was reminded something about beauty, that sometimes you have to change your perspective in order to find it. Despite the dark clouds and incoming rain, the sun managed to peek through for a while. It’s brilliant orange rays glowed against the little bit of blue sky and reflected off the water. It was absolutely beautiful! But when I turned my head to look at the sky in the other direction, it was completely different but equally as beautiful. It was filled with various shades of grey and black clouds mixing together. The colors seemed to be airbrushed and looked as if someone had cleaned out dirty lint from a dryer vent, placing it in the sky. So there I sat, captivated by both sides of the sky. One side was majestic and radiant while the other was ominous and threatening. Both were beautiful, captivating, and spoke to my soul.

Although it was not a typical blue sky and cloudless sunrise that I’m used to, it was still a beautiful way to start the day. Sometimes, more than often, in order to find beauty in life, we need to adjust our perspective. You never know what beauty you might find.

“Butterflies can’t see their wings. They can’t see how beautiful they are but everyone else can. People are like that as well.”

-Anonymous

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One step at a time

“Some lessons in life can’t be taught. They simply have to be learned”

-Jodi Picoult

Have you ever made a decision and then shortly afterwards, completely regret it? Like you replay it in your mind a million times, thinking “why was I so stupid?! That was an awful decision.”

My mom’s birthday was last week and to celebrate it my immediate family got together at this cute inn along the Chesapeake Bay. (it’s my mom’s happy place…mine too).  The inn has its own private beach with kayaks and paddleboards and is so peaceful. The grounds are beautifully landscaped with all sorts of flowers. All worries wash away when I’m there.

As everyone gets older and busy with their own lives, it’s rare that we all can get together as a family, so I was definitely excited to see everyone. Well long story short, by the time my brothers and wives arrived, I was already laying out on the beach. As my mom checked into the place, my one brother and his wife came to help me walk back to our place. As I started to stand up from nearly falling asleep in the sun, my brother asked me if I wanted to put shoes on before walking. Being stupid, in a rush, and not thinking, I replied no, walking barefoot. After a couple of minutes of walking, I realized this was a bad decision and the bottoms of my feet started to burn. By the time we reached our place, my feet had burned so much that I couldn’t even stand. Both feet had burn marks but part of my right foot turned black like I had stepped in volcanic ash. Trying to be optimistic, I told everyone it was no big deal but inside I was freaking out. It looked as though it was 3rd degree burn on my right foot. I was so disappointed in myself, how could I be so careless?! I had ruined my feet. Upon finally sitting down in the kitchen and seeing this, we did what any intelligent person would do and “Googled”  how to treat burned feet. Since then, my feet have been wrapped with gauze, covered to avoid infection, and occasionally soaked in epsom salt.

During this week while regretting my decision and being disappointed in myself, I tried to remember what was going through my mind as I made this terrible decision to not wear shoes. My first thought, was really stupid. I had decided that it would look totally ridiculous to walk in a bathing suit and shoes. As I thought of this later in the week, my only thoughts afterwards were “what kind of horrible logic is this?! It’s was a beach! No one cares how you look and while at the beach, most people throw all fashion sense out the window!” My second thought was that of being stubborn and determined to keep walking despite the pain. I could have easily asked my brother to give me a piggy-back ride or to get my shoes because my feet hurt. But no, I was stubborn and stupid!

Within a couple of days after the burn, my left foot started to heal and return to normal but my right foot was still black. Although I had protested going to the doctor, thinking it would be useless, I decided to make an appointment and see if they knew how to save my foot. The fact that part of my right foot was black bothered me but it didn’t hurt as much anymore, making me think maybe the burn had affected my feeling somehow, which really made me start to panic.

Well the doctor didn’t prove useless because they said the big black spot is just a really big blood blister and will probably go away in a couple of weeks. I was so relieved to hear that news and to know my foot wouldn’t have to be amputated or permanently look like I stepped in black tar.

Moral of the story, when walking on hot pavement, always wear your shoes. Who cares if your shoes don’t match your outfit, protecting your feet is much more important. You can always buy new shoes, you can’t always buy new feet. And if you’re in pain or need help, stop, tell someone, and readjust, there is no sense in hiding the truth.

Be determined not stubborn.

Determination is positive, is light, and will take you far. It’s a willingness to change as needed, keeping an open mind.

Stubborn is a heavy feeling, a refusal to budge, a negative, closed mind and will take you nowhere.

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Overcoming my fear of the dishwasher

“What is the biggest thing that stops people from living their lives in the present moment? Fear – and we must learn how to overcome fear”

Brian Weiss

For the past several months, my dishwasher has been slowly dying.

Shortly after I graduated high school, my mom and I decided to redo our kitchen; new counters, new cabinets, new appliances, new everything. Along with choosing the design for the counters, backsplash, and cabinets,; there were several changes I made to the layout so it would be more accommodating for me. First of all, we had a wall knocked down, making the kitchen bigger.  Also, we installed a wall oven so I no longer had to worry about bending down and falling into the oven like Hansel and Gretel. We had several pull-down cabinets installed (great for the vertically challenged) and positioned the stove top near the sink so when making pasta noodles, the pot could just be slid across the counter and drained, instead of having to carry a hot pot across the room (and most likely burning myself). But my favorite thing, which was not cheap, was a dishwasher with drawers!
Years ago, as I was relearning to walk after cancer and radiation, I used to fall quite often. Imagine a baby first learning to walk, except I was 8 years old, was overweight from steroids, and my falls definitely caused a little more damage. My poor knees have permanent scars from some of my greatest falls or those scraps that kept getting reopened. I used to have the tendency to fall into things and break them. The dishwasher happened to be one of those things, one with a single door that pulls down  I landed on top of the door several times when it was open, nearly breaking the door off and causing it to leak as it ran. Needless to say, I felt terrible when this happened and avoided the dishwasher at all costs when it was open. I became afraid of a dishwasher.
So you can imagine my surprise when I found a dishwasher with drawers that I couldn’t break. I was actually really excited about a dishwasher! It had two separate drawers just like a dresser, both equal in size, and you didn’t have to run both at the same time. Sometimes I loaded and washed only the top drawer, other times I loaded both drawers. And the best part was, if I lost my balance accidentally, I didn’t have to worry about breaking it!
dishwasher
But as the saying goes, all good things come to an end and after almost ten years, the dishwasher started dying. The top would no longer drain properly and one day, it just stopped working. So we were stuck with only the bottom drawer, minimizing the amount of dishes we used and more than often, just hand-washing them instead. Then after about four months of this, the dishwater started to make a terrible grinding noise when it was on. I was worried it was going to start a fire, my mom was worried it would flood the kitchen. We attempted to have someone take a look at it and fix it but it ended up that a dishwasher with drawers is so rare and only manufactured by one company so finding someone was next to impossible. So we decided it was finally time to get a new one but were quickly reminded how expensive the dishwasher with drawers was compared to standard dishwashers with a pull-down door. I even searched ADA websites because honestly, dishwashers with a pull-down door are not that user-friendly for people who are wheelchair bound or have other physical limitations. But I couldn’t find anything.  It baffles me how able-bodied people and companies don’t consider these things sometimes, how a simple appliance is not always user-friendly when you’re disabled. After debating over whether the cost would be worth it to get my dream dishwasher again,  I decided to face my fear of breaking the dishwasher and go back to using one with the pull-down door.
After going to Lowes and testing out the doors, I swallowed my fear and bought one with a very sturdy door that would not snap immediately if it was accidentally bumped or fallen on top of.
But something I realized in this process is that my walking is not like it was 20 years ago. Yes, I may not walk straight, have a slight limp, stumble at times, and walk as if I’m drunk but I am no longer an overgrown baby first learning to walk. I do not fall everyday like I used to and thank goodness for that because my knees can’t handle that much falling anymore.  I have better control of my walking, and am more aware of my movements.  Through therapists and coaches, I have learned what works best for me. For example, saying “slow down” is not always good for me. I learned that walking slow also gives my brain too much time to disrupt the signals it sends to my feet. Therefore, what starts out as good foot placement becomes bad foot placement and could result in falling. It is best for me to walk at a steady, controlled,semi-quick pace, not giving my brain time to think or mess up things. This does mean I should walk fast, not a good idea, but is just something I’ve come to be aware of with my body.
The style of my new dishwasher may have some negative memories attached to it but my fear and past experiences should not dictate the present moment. I am a different person now compared to who I was 20 years ago and I am not going to let my fear keep me having clean dishes. So bring it on dishwasher,  I’m not afraid of you!
Live with intention,
Be bold in the face of adversity,
Live the life you were destined for

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Accept yourself with no exceptions

“Positive thinking isn’t about expecting the best to happen every time, it is about accepting that whatever happens is the best for that moment”

We all have had those moments where we go to check Facebook for a quick second and end up spending a half-hour on there, scrolling through our news feed, comparing ourselves to other people. Asking ourselves questions the entire time like “They look like they’re having so much fun and do so many cool things, why is my life so boring?” Or “I wonder why they didn’t invite me? Maybe there’s something wrong with me.” Or “How do your selfies look so perfect? It takes me at least 5 shots to get a picture I don’t hate.”

Admit it. We’ve all been down that road, comparing ourselves to the people around us. Even the most confident and self-assured people are guilty of this. If you have never done that, well kudos to you.

Tonight I had my high school reunion and to be completely honest, I was kind of anxious about it. Seeing what everyone has been up to is awesome and how much everyone has changed. I am so happy for my friends and everything they’ve accomplished. But at the same time I couldn’t help compare myself, it’s human nature.

So after throwing a pity party and momentarily freaking out about my life, I started to come back to reality. The thing is although I am happy for my friends, I would never want their lives and I’m pretty sure they wouldn’t want mine. Where I am in life right now may not be where I expected to be but as we all know too well, life is a wild journey. Having expectations just leads to disappointments.  And comparing ourselves to others is pointless. The world would be incredibly boring if everyone was exactly alike. When we accept ourselves and love who we are, we become empowered and respect ourselves. Therefore attracting respect from others too.

The other week, I met up with a friend for brunch. After spending hours catching up and laughing, we both went our seperate ways. As I was heading home, I thought how nice it was to see my friend and what great things she’s doing with her life but of course, I started comparing myself. Because of my disabilities, I will most likely never be able to drive and although it seems like no big deal, I feel like it holds me back in life. As my mind started to think how if I could drive, my life would more exciting like hers and started to get depressed, my mom and I were rear-ended. Everyone was fine thankfully and besides some minor damage, the car was okay. But in the quick second, I remembered why I’m glad I don’t drive. As a cancer survivor, I would rather go out in another way besides a car accident. Maybe something a little less dramatic. But moral of the story, guess that’s what I get for comparing myself to someone else.

“When you know yourself, you’re empowered.  When you accept yourself, you’re invincible”

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