Fighting Apathy: Life Worth Living

Do you ever wish you could rewind time? Unsay something; undo something? As the popular saying goes, it’s not so much the things I’ve done, but the things I haven’t done, that I regret.

Like most kids probably, when I turned 18, I was going to conquer the world.I got married, had a baby, and everyone said I couldn’t conquer the world now. I was going to prove them wrong.

But I woke up a couple years ago and realized I hadn’t proved anybody wrong. I had tried, but it seemed like every time I thought I was making the right decision, I was making the wrong one.

I got too tied up in a paycheck, and forgot about the journey. Forgot about the music and the fun. Forgot to do the things that make life worth living.

I had been able to make my own decisions for almost 9 years, and what did I have to show for it? Just stuff. A couple cars, some furniture, a good credit score. But who did I help? Where was my impact? Where was the music?

So, I decided to start making an impact. To make up for lost time. I would practice music again, volunteer at church and shelters, spend more time with friends and family. But as much as I tried, between work and other responsibilities, by the time I got a chance to do anything, I was too fatigued and in too much pain. Day in and day out, I went to work, came home, and went to bed.

When I quit my job, I had every intention of changing my path. I would play music again, volunteer for things I could do, make a difference.

But recently I realized, I wasn’t really doing any of that.

I wasn’t playing the keyboard, because I was too afraid of getting off the couch. Really. I was afraid that if I got off the couch, the pain would start. Music is my passion, but I was letting the fear of pain make me too apathetic to go after it.

My church has always needed help in the childcare department. I didn’t want to help, because I was afraid of pain. Afraid of committing and then being in pain getting ready early in the morning, and being in pain doing activities with the kids. Afraid I’d get put in the nursery, or with toddlers that I would have to carry and chase. Afraid it would end up like work, where I would have to be calling in all the time. I didn’t do much of anything because of the pain. No, it was sillier than that. I didn’t do anything because of the fear of pain.

I wasn’t really helping anyone or doing anything because I was afraid of the pain that it might cause. I was letting apathy get the best of me. What kind of a life is that?

I started to get angry. Angry that I was just sitting around all the time so I wouldn’t be in pain. Angry that I was letting fear keep me on the couch. The thing is, that’s a ridiculous plan, because I was in pain anyway.

So why shouldn’t I walk across the room and sit in the chair in front of the keyboard? Maybe it’ll hurt more. Well, it probably won’t. And then at least I’ll be doing something. And if it does, chances are it will be short lived. And then at least I’ll have done something.

And then I had this epiphany about helping out at church: I could ask to only be scheduled with school-aged children, so I wouldn’t have to carry or chase anyone. Sitting in my wheelchair talking to kids and teaching them would not be any different physically than sitting in my wheelchair listening to a sermon. And I could ask to only be scheduled at second service, so I wouldn’t have to be up and around too early. Wow. I’m a genius.

So, I’ve been playing music and teaching kids at church, and life has been a lot less boring.

In my efforts to reach out and live life, something really cool happened this weekend.

A few months ago, my brother-in-law, Ian, was diagnosed with cancer. Interestingly, it’s the same form of cancer that my uncle has. On Thursday, we stopped at their house to drop off a couple things, and we noticed they really needed yard work done. I felt kind of bad for not thinking about it before. Of course they need yard work done! He’s going through chemo, and my sister has a job and a 10 month old baby to take care of!

Right that minute I texted one of my community group leaders from church. She got a hold of the rest of my small group, and the next day we were all at my sister’s with shovels, rakes and gardening gloves. I was touched that they were willing to take a Friday night and spend hours doing yard work to help my family. As far as I was concerned, I figured I’d be spending the evening sitting on my sister’s couch while they did all the work. But when we got there, I decided to grab a shovel and see how far I got.

I was pleasantly surprised that I was able to help, and even make a dent in the work. And instead of hurting, it actually felt good to use those muscles I forgot I had. Eventually my back gave in, and I had to stop. I was fully expecting to be in a lot of pain the next day, but I wasn’t. In fact, I woke up with less pain than I have in a long time. Good Karma? Or maybe there’s something to using those muscles…

My nephew Kolby is a little light-skinned version of my son :)

My nephew Kolby is a little light-skinned version of my son 🙂

I’m so glad I decided to put the apathy away. To take the risk of being in a little more pain once in a while in order to live life; to make a difference. I can’t wait for the next opportunity.

Update: Playing my keyboard has been great. The chair we had used to hurt my back after a few minutes. By chance, we got another chair at a yard sale (the one we had had wheels; bad for a walking baby), and that chair doesn’t hurt my back. So I can play until the kids wake up without having any pain.

Childcare is going well. Usually I have someone in there to help me help the kids with their crafts. It’s a little difficult when I don’t, getting around to all the kids to help them. But there was only one day that I really had a hard time and ended up in extra pain. The rest have gone well.

My community group was able to pull all the weeds and scattered saplings out of my sister’s front yard. We will be back on Friday to do the back yard. We learned that they do have a sprinkler system installed, so they’ll be able to water it easily. Also, one of the guys in my community group works for a landscaping company. He was able to get a great deal on setting grass seed for her yard in the fall, and a year of lawn care, where all she would have to do is mow, and set it up so that there is no cost to my sister. Now that’s what church, and family, should be like.

Live with purpose.

Please don't stop the music

❤ Please don’t stop the music ❤

Coolest. Mom. Ever.

I have to admit something. Something that I have never admitted to anyone. And now I’m telling (potentially) the whole world. Ever since my daughter was born, and even before that, as a kid when I imagined having my own kids, I wondered if my disability would be a point of embarrassment for her. I wondered if it would drive us apart. If the things I couldn’t do, which were less back then, would affect our relationship. If I wouldn’t have the same opportunity to be close to my kids as I would if I didn’t have a disability.

I knew it would probably be ok until she started school. But then, maybe the questions, and probably teasing, from the other kids; mixed with the need to fit in, would turn her against me.

Or maybe. Maybe I could teach her to be different. Maybe I could teach her that everyone is different. That we’re supposed to be different, because that’s how God made us. Maybe I could teach her to be friends with the kid everyone teases. To stand up for him, even when it’s not the ‘cool’ thing to do. That people who use wheelchairs, or leg braces, or walkers are just like everyone else. Maybe I could teach her to be a leader and not a follower. Maybe she wouldn’t see me any differently than she saw the other moms.

Fast forward eight years, and it’s not as big of an issue as I worried it would be. There have been a few times when I wished I wasn’t handicap for her sake. Picking her up from school is like going back in time; all the kids staring at the girl who walks funny. I see the expression on her face and I know it bothers her. She tells me she doesn’t like when people stare because it’s rude and it might hurt my feelings. I’m glad she knows this. I’m pretty used to staring and usually I don’t let it bother me, but I’m glad she knows not to stare. Not to hurt someone else’s feelings.
And when she says she wishes she could walk or ride her skateboard to school, I have to say, “I’m sorry, but I can’t walk that far, and you can’t go alone.”

When I imagined being a mom, I imagined taking my kids camping and on hikes, helping build houses in Guatemala, or even just walking them to school. I can’t do any of that now, but I have to remind myself of the positives.

The positives are that she is friends with everyone. That she doesn’t let the way people look or what they can do determine her friendships. That she is just as good of friends with the girl in the wheelchair as she is with the one on the soccer team.

And then there are the times that she has stuck up for me. The time when they didn’t know I could hear them and her friend who had spent the night said “What’s taking your mom so long?! It’s just cereal!” and Romi said “She hurts. She’s in a lot of pain and it’s hard for her to walk. So you shouldn’t say things like that. Besides, we could get our own cereal.” Or the time when the little girl at school said “Why does your mom walk like that?” And she said “She’s right here, why don’t you ask her. She doesn’t mind.”

She’s usually surprised when I thank her. Surprised because she didn’t know I heard what they said, and surprised that I am more glad that she did the right thing than upset at what the other person said.

Needless to say, I don’t usually feel like the cool mom. When my friends are making blue pasta or spider web snacks for preschool out of pretzels and white chocolate, I can usually barely handle heating up leftovers or making a sandwich. While I would love to take them camping or to help underprivileged people in a third world country, there are times when I can’t even get off the couch to take them to the park.

But that feeling changed last weekend. Last weekend our church hosted a ‘drive-in’ movie. They were going to show the movie Cars on the big projector screen in the sanctuary, and the idea was that parents would help make cardboard cars for the kids to sit in while they watched the movie. I love a good, challenging project, and this was fun because the whole family could get in on it, and then we could have some fun watching the movie and hanging out with friends.

After finally finding some boxes the day before, we got to work. One of the boxes was big and long, so Romi decided he wanted a VW bus that she would decorate as a rock star tour bus. So I sat in a chair and directed while Sal carved out the design. Romi also decided she wanted it to be a convertible, so we had to get really creative. After about four hours, we had a convertible VW rock star tour bus, complete with license plates, working headlights and tail lights, a convertible roof, and a VW logo.

 

CardboardCar

 

I posted a picture of it on Facebook, and my cousin made the comment “Coolest. Mom. Ever.”

Seeing those words was a turning point for me. A realization of something that I already knew in theory, but hadn’t let myself really believe: Being a cool mom, a good mom, a mom that is close to my kids, didn’t have to be determined by what I couldn’t do. I could let it be determined by what I could do. Maybe I can’t spend all day creating a Martha Stewart style dinner. I might never be able to take them camping and on a hike through the woods. But you know what? I can create a pretty awesome cardboard car while sitting in a chair. I can help her find videos on YouTube so she can learn how to do the worm and spin on her head, to work toward her dream of being a rocks star/hip hop dancer. I’m one of the few moms that would let her cut her hair short and dye her bangs red and blue, and I can even help her start her own blog.

So yeah, maybe my cousin is right. Maybe I am the Coolest. Mom. Ever.

Don’t let anything be determined by what you can’t do.

*American*Hair*

Check out my kid’s first blog post!

*A*Promising*Life*

Last summer I got my hair cut short & colored. We colored it blue,(only my bangs though!) All through the school year people continued to comment on my hair until, the last day of school came & I went home. Here is a picture of my hair then:

BlueHair

But now this summer I got my hair Completely, Totally Different. Let me guess. You want to know how it’s Completely, Totally Different ? Well now, this summer, I put red in it at the top. Here is a picture of my hair now:

Blue&RedHair

The reason why I wanted my hair blue & red was because I wanted to try something new, different, & unique. You should never be afraid to try something different. My (really nice) hair dresser  Holly, did it for me. While my mom was talking to Holly, She told her that I wanted red in my hair but…

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Fili-busted.

Generally speaking, I do not follow politics. Besides a few issues that are important to our family, I just don’t keep up on them. I’m busy keeping up with Dora the Explorer, how I’m going to handle a baby from a wheelchair, and the drama of second grade. If I need to know something, I call my politically savvy cousin, Shekinah. I don’t know who my state governor or Senators are (Shekinah is probably having a heart attack now), and I usually don’t know what we’re voting on until I get the ballot in the mail. I vote, and I have a good understanding of our political system due to paying attention in class, but that’s as far as it goes.

But something came to my attention the other day. As most of us have heard, Wendy Davis of Texas, recently turned to filibustering as a way of stopping a law from passing.  Now, to be honest, when I first heard about Ms. Davis, I did not know what filibustering was. So I researched it and read about it. Even then, I wasn’t sure I had it right. From what I understood, filibustering is when you take the floor and just talk. For hours on end, without stopping, as a way to stall the political process, to stop a law from passing that you do not agree with. That couldn’t be right. Permitted, recognized stalling? In the government? That’s something akin to a 6 year old distracting his parents so his friend can sneak a frog in the back door. So I called Shekinah, and I had understood correctly. Filibustering is a grown up term for stalling.

*For the record, Shekinah believes that filibusters can be a useful tool when used correctly and when necessary, and I agree with her.

The issue at hand was abortion. For the record I do not agree with abortion, and therefore do not agree with Wendy Davis, but if we look past our disagreement, there is another issue at hand.

Ms. Davis’ filibuster was objected when another senator helped her with a back brace.

Filibustering has strict rules. The rules vary for each of the 13 states that allow filibusters, but they are similar. In the state of Texas, the rules are that the senator has to stay on topic, and is not allowed to eat, drink, use the restroom, or sit or lean on a desk or chair.

“During a filibuster, a senator is limited to topics relevant to the bill being discussed and cannot eat, drink or use the restroom during the speech. The rules also prohibit sitting or leaning on a desk or chair under any circumstances when the senator has the floor and is speaking on the bill or resolution.”

Read more at the Hays Free Press http://haysfreepress.com/2013/06/26/what-are-the-rules-of-a-filibuster/#ixzz2XWbecpJ6

There are multiple things that I find wrong with these rules. And it’s not just a matter of my personal opinion; I believe they are unconstitutional. Specifically the phrase “under any circumstances”.  To start with, they don’t comply with the ADA, Americans with Disabilities Act, which states:

“The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, State and local government services, public accommodations, commercial facilities, and transportation. It also mandates the establishment of TDD/telephone relay services.”

http://www.ada.gov/2010_regs.htm

From reading these rules of filibustering, you cannot do it from a wheelchair. If you are not able to stand for hours on end, your attempt will be unsuccessful. As of now, I don’t know of any disabled senators, but that doesn’t mean there will never be one. And we can’t wait until there is one to change this rule. If a disabled senator wanted to exercise their right to filibuster, they would have to wait for the rules to be changed. That would most likely make it too late for the Senator to filibuster the issue at hand.

I believe those are reasonable guidelines for a perfectly able bodied person. But let’s set disability aside. What about a senator with a back problem? Or a knee problem? I’m sure there are a few senators with those. It is unfair and unconstitutional that they would not have the same opportunity. Add on someone with diabetes or hypoglycemia, who can’t go many hours without eating, and I bet we’ve covered 30 percent of the senate. Not to mention the possibility of someone who has bladder or bowel problems, that isn’t able to wait to use the restroom.

I’m not saying that those rules should be done away with completely. I can see why they are a necessary element of the filibuster. What I am saying is that they should be reasonably flexible. Just as any employer would be required to make reasonable accommodations in order for me to work, the senate should be required to make reasonable accommodations to allow a senator with a medical problem to filibuster. “Under any circumstances” should not be a part of those rules.

These rules should be changed to support equality. No person’s lack of physical ability should keep them from taking part in the political process. From being allowed to fight for their beliefs. In a country where we boast about our freedom and equality, “under any circumstances” should not be a phrase found in our government policies referring to physical ability.

These are the thirteen states that currently allow filibusters:

  • Alabama
  • Alaska
  • Arkansas
  • Connecticut
  • Florida
  • Hawaii
  • Idaho
  • Maine
  • Nebraska
  • South Carolina
  • Texas
  • Utah
  • Vermont

If you were a senator in one of these states, would you be physically able to filibuster under those rules?

As Shekinah would say: Quick! Call your senators!

Filibustering is a common practice at our house, too.

Filibustering is a common practice at our house, too.

“You know what you do?…You don’t feel bad about it.”

I met someone yesterday that I think may have changed my life with something she said, and she probably doesn’t even know it.

Yesterday my community group (like a bible study group) hosted a barbeque in the park. I almost didn’t go, but since we were doing it to reach out to the community and as an act of kindness, I decided to go. After we arrived, a family arrived that I hadn’t met before. They had seven(!) kids, and one of them was using a wheelchair.

I told her that I liked her chair, and that it looked a lot like mine. I wasn’t using my chair, even though I really needed to, because I haven’t figured out the art of baby chasing from a wheelchair (another post for another time).

The way she sat and her shorter stature made me wonder if she had Spina Bifida, so I asked her mom when she was off playing with the other kids. She does have Spina Bifida, which as I’ve mentioned, one of my best friends, Kate, has, so we got to talking.

One of her friends adopted a child that has CP, so she was asking some questions about it, because her friend is looking for information. It came up that one of the biggest challenges I face is cooking.

I can’t stand in the kitchen long enough to make a meal. I’ve tried bringing my wheelchair in to do it, but the counters and stove are right at eye-level from my chair. Also, it’s hard to get around in the tight quarters in a wheelchair. I’ve tried using a barstool, but that doesn’t work, because you have to move all around the kitchen to cook. What doesn’t help is that I don’t particularly like cooking, so it’s already not enjoyable.

I tend to force myself to try to cook to save money. Eating out is expensive, and my husband, who is a cook, doesn’t wasn’t to come home from work and cook some more. The money thing has never really bothered him, so he doesn’t mind eating out. But our family doesn’t have a lot of extra money, so I feel that I need to save wherever I can.

Also, he is from Mexico, where they don’t eat cereal or a sandwich as a meal, so while my daughter and I are fine with eating just that, he is not. And since in Mexico the women tend to spend a lot of their time cooking awesome food, I somehow feel like I’m not as good of a wife for not doing it.

I know this is ridiculous, especially since he has in no way ever made me feel that way, but like I’ve said, sometimes I’m pretty hard on myself.

Recently, I had an opportunity to save money and have some easy, home-made frozen meals on hand, but it meant I would have to cook 2 meals, and make enough food for about 40 people each meal.

I was reluctant to participate. I can barely cook dinner for my own family; why would I want to try doing it for 40 people? Twice? One of the girls offered to help me, but me cooking usually ends in tears, so I declined her help. Plus, I didn’t see much point in me sitting and directing her on what to do.

I liked the idea of saving money and having meals ready to heat. Being a health nut, I’d rather have home-cooked meals available than fast food anyway. My husband offered to help, so I decided to give it a shot. He did the shopping and came home, but within 10 minutes of cooking I was in tears. When I thought of how much I still needed to do, that brought on more tears. He was sweet and brought me some medicine and my wheelchair, and a coke and chocolate (that always calms me down). Somehow we finished it all, but I was in a lot of pain, and I will NOT be doing that again. Well, never say never; perhaps the trick is to not do it all in one day. It was a busy week, so it just worked out that way.

We were supposed to meet to deliver the meals and play some games that night. After cooking, I took a shower (another painful task) and got into my sweats. I really wasn’t feeling well, and I didn’t want to go. I changed my mind at the last minute, so we all went. I still was in a lot of pain, so we left early. While we were leaving, someone said “Thanks for toughing it out, I know it’s frustrating.”

That comment kind of got to me. ‘Frustrating’ is not the right word. I felt that ‘frustrating’ would imply that I simply did not want to do it because it is complicated. ‘Frustrating’ sounds like I simply chose not to be lazy. In cases like this, I wish pain was visible. I wish they could see it and know. Because I chose to dry my tears and have a smile on my face when we arrived.

I am in pain all the time. Sometimes severe, sometimes not, but all the time. But I generally keep it to myself. I don’t go around with a frown on my face, or complain about it all the time. That’s just my choice. The truth is that I have a lot to smile and be happy about, and I think those things are more important. But sometimes I think my smile makes my pain seem less real to those around me. Some tend to think I’m making excuses or being lazy, or that when my family helps me with something, they are babying me.

I have always done as much as I can for myself. I have always pushed myself to be as independent as I can be. But I do have limits, and I know what they are. I can’t do as much physically as other people. So what is frustrating is when other people question those limits. When they assume I am simply not trying.

Don’t get me wrong, I don’t mind when people ask if I can do something. I would much rather they ask than assume that I cannot. What bothers me is when I tell them I can’t, but they want me to do it anyway. When they imply that if I would just put in some effort, I could do it. Kate had a similar incident on the same weekend, and I doubt we are alone in this.

Okay, enough with my rant and tangent. The person didn’t mean it that way, cooking is just a sensitive subject for me.

So, back to the park. I was telling my new friend about how cooking is a difficulty for me, and she was totally understanding why; a reaction that I usually don’t get. You know what she said? She said “You know what you do? You eat out, and don’t feel bad about it.”

Wow. So simple, so silly, but in my world, so profound. I’ve never had anyone really understand before. Nobody ever just give me permission to spend the extra money on something that’s considered a luxury because, well, that’s what I need to do.

So from now on, I’m going to do what I need to do. I’m going to eat out when I the pain is too much to stand, and I’m not going to feel bad about it. I’m going to listen to my body, and not force it to stand. I’m going to use my chair when I need to, baby and all. The more I force myself now, the less I’ll be able to use my legs later. So I’m going to take care of myself, and not let other people be my guide. I’m going to do my best, and let God do the rest.

So thank you new friend, for giving me permission. Something that I didn’t know I needed, but it has kind of set me free.

Sometimes when daddy's at work, we have cereal for dinner. But we like it that way.

Sometimes when daddy’s at work, we have cereal for dinner. But we like it that way.

The Liebster Award

I was nominated for another award! Maria at Creative Ability nominated me for the Liebster Award. I’m touched that you thought of me Maria, thank you!

Blonde Ambition: My Liebster Award

Again, there are some rules I have to follow with this nomination.

These are the rules:

1. When you receive the award, thank the person that gave it to you and post a link to their blog in

your post. (Done!)

2. Post 11 random facts about yourself.

3. Answer the 11 questions set for you.

4. Choose 11 blogs that inspire you with under 200 followers and link their pages to your post.

5. Create 11 questions for them.

6. Go to your nominees page and let them know you have nominated them.

11 random facts

  1. I speak fluent Spanish.
  2. I love live music, and I have music playing almost 24/7.
  3. I read a lot, but not fiction.
  4. My dream job would be DJing or playing music.
  5. I love summer, I hate winter.
  6. I love the rain, especially downpours and thunderstorms.
  7. My favorite place to be is on my couch with my family.
  8. I see my disability as an opportunity (usually).
  9. But I hate wearing braces and using a wheelchair. I feel confined.
  10. I’d rather wear jeans, a tank top, and a pair of Converse than, well, anything else.
  11. I had a really hard time coming up with 11 random facts.

1. What are your hobbies? Playing the keyboard, learning to DJ, reading, blogging, interior decorating.

2. What’s your favorite TV show? I don’t watch much TV, but I do like to watch new episodes of Switched At Birth. I think it’s awesome that they’re spreading awareness of the deaf community, and now about the troubles of vets returning from war. My brother is an Iraq vet, so it hits close to home.

3. Name something you look forward to each day. My kids waking up. Lest I sound too sappy, I also look forward to them going to sleep.

4. Who’s your real-life hero? My two best friends. They’re amazing. Always there when I need them, and always on my side.

5. What’s your favorite comfort food? Dark chocolate and a coke.

6. What’s your favorite movie? Save the last dance. I can’t dance like that, but I wish I could.

7. What/Who makes you giggle? My kids. They’re so cute!

8. Name something that annoys you. Laziness. This probably isn’t a good attitude, but I’m known for saying “If my handicapped butt can do it, then so can you.”

9. What’s your favorite summer-time activity? Swimming!

10. What is the last good deed you have done? Does teaching kids’ church count? Oh, in the drive thru at Starbucks I paid the tab for the car behind me. I think Random Acts of Kindness are really cool. I aim to do one a day… but I usually forget.

11. What’s your best personal trait? Ummm hold on let me ask someone. Ok my husband says that I’m very kind. Awwww.

11 Questions for my nominees

1. Why do you blog?

2. What are your challenges with blogging?

3. What is your biggest inspiration?

4. When was your last Random Act of Kindness?

5. What is your dream career?

6. What’s a cause that’s important to you?

7. Your favorite quote?

8. A quote you are known for saying?

9. Sneakers or something fancy?

10. Favorite store?

11. Favorite activity?

My nominees

Nicola at View From a Walking Frame

Christin at 365 Days of Thanks

Transforming Everything

D.B. Clark at Just Rollin’ On

It’s only four; I had a few more, but then I realized they had more than 200 followers…

Ready nominees?

Aaaaand go!

The Super Sweet Blog Award

Guess what?!

My blog has been nominated for The Super Sweet Blog Award! Nicolanoo over at View From A Walking Frame nominated me. Wasn’t that sweet of her? I’ve only been blogging for about six months, so I don’t really know how these awards work. I think it’s mostly to say “Kuddos”, and maybe a sticker on your home page. Anyone who knows more, feel free to enlighten me 🙂

So, with the nomination, there are some rules I have to follow.

RULES

Thank the Super Sweet BLOGGER that nominated you. (Done!)

Answer 5 Super Sweet questions.

Include the Super Sweet Blogging Award in your blog post.

Nominate your nominees on their blog.

THE 5 SWEET QUESTIONS

(Please all nominees answer the same questions)

  1. Cookies or Cake? – No preference on this one. As long as I have a cup of milk or coffee. But I do love chocolate frosting.
  2. Chocolate or Vanilla? – CHOCOLATE. I’m an addict. It’s a problem. But I prefer dark chocolate, so it’s healthy, right?
  3. Favourite Sweet Treat? – Iced coconut mocha from Starbucks. Perfection in a cup.
  4. Sweet Nickname – Ali is my nickname… but I don’t know if it’s sweet. Ashmo is probably my favorite though, bestowed upon me by my best friend’s dad.

I am supposed to nominate others as well, so here are my nominees:

AF at Adventure of Yasin – Her stories and feelings about her little brother with cerebral palsy are enough to make you tear up.

Maria at Creative Ability – Maria and I have a lot in common. It’s always nice to find a kindred spirit.

Mom from Living With Superman – Her family is so sweet, and her little boy will be getting stem cell therapy soon. I am excited to see how it helps his symptoms!

Lorna at Gin and Lemonade – She is funny and sweet… and getting married soon!

Since I’m new to blogging and technologically impaired, I could only think of four that hadn’t already been nominated. A cool thing about these nominations is that you get to see who else got nominated, so you are introduced to a bunch of new people and their blogs.

Check out my nominees!

Discrimination

When I was a kid, I had a whole list of things I was sure I wouldn’t have to deal with when I was FINALLY a grown-up. Little did I realize, becoming a grown-up didn’t mean you could make your problems go away, and sometimes, adults act just as badly as children.

Among this list of problems was the issue of discrimination. I’m not talking about open discrimination that says you can’t play on the baseball team or work for our company because you’re handicapped. I’m talking about the kind of discrimination that there are no laws against. The kind that we think doesn’t exist anymore. The kind that we tell ourselves we would never take part in.

Imagine this: I’m 10 years old and in 5th grade. I recently decided to stop spending time with the new girl from Florida that had befriended me. After chasing her and her new group around the schoolyard because they said they were running from ‘the weird kid’, and trying to convince them to stop, I finally figured out that ‘the weird kid’ was me.

Not wanting to spend recess embarrassed, walking around alone, I decided to befriend a new group of kids. Some girls from my class were sitting in a circle under a tree. I decided to see what they were up to. A few of them glanced at me as I drew near, making worried expressions. Adrienne* walked over to me.

“Tiffany* wants to know what you want.”

“I just wanted to come sit with you guys”

Adrienne runs back to the group, relays the message, and comes back.

“Tiffany said no.”

“Why not?” Thinking: Seriously? They’re sending a messenger before I get too close? Like I’m contagious?

Adrienne relays the question and comes back

“Um, I’m really sorry, but she says it’s because you’re too fat.”

“Well, no offense Adrienne, but, um, you’re bigger than I am, and she’s letting you sit with them.”

“Well really it’s because of the way you walk.”

“So?”

“I gotta go.”

*Names were changed. If my blog ever goes viral, I don’t want to be sued for slander.

That is a true story. I don’t remember really feeling like people saw me differently because of my disability until 4th grade, when Tiffany was in my class. She was the first one to ever really be mean simply because I walked funny. Unfortunately, Tiffany was also in my 5th grade class, and she spread her disdain to other girls in the class. Tiffany did not attend my middle school, but it had plenty of its own girls that would treat me as a lower class.

So, since then, when I meet new people, I have always wondered if they will view me differently because I am disabled. It definitely affects my confidence. And I always thought “Well at least when I’m a grown-up, people won’t treat me differently, because they will know better. And kids will just respect me because I’m a grown-up.

I have found that that is not necessarily true. People still treat me differently. Recently, I went to a party. The only person I knew at the party was the person who invited me. Originally, I wasn’t going to go. I knew I wouldn’t know anyone else there, and I would sit there, bored and alone. But I didn’t want to make that person feel bad, and I thought, just maybe, it would turn out to be a good time.

When I arrived, we chatted for a minute, and then she went to socialize with other people. I sat awkwardly alone for a while, while everyone else was talking and laughing and having a good time. I thought “This is stupid. I’m in a room full of people, and I’m the only one sitting alone.” So I went to the table next to me and said hello, trying to make conversation. Big mistake. One of them responded, while the other two just glared with irritation. After a few sentences, we had pretty much run out of things to say. So I started on a different subject. One of the girls answered the question I asked, and then all of them turned around and started talking about something else. I decided that was my cue to leave, so I thanked the host and left.

These women were at least 30 years old. Too old to be holding on to cliques. And I could be wrong about them not including me because of my disability, but I don’t think so. I have seen it too many times. Too many times have I struggled to prove that I am ‘a normal person’ in order to be included. This is only one example, but there are many more.

I believe that everyone is equal. No matter what your job title or salary. No matter where you come from or your family background. No matter if you’re the President or a drive thru cashier. No matter your abilities or inabilities. No one person is better than another. And you know, God is no respecter of persons. But we, in order to make ourselves feel important, count ourselves better than other people.

Another side to this is when people over-compensate. I’ve noticed that when I go to the store in a wheelchair, a lot of people treat me as a small child. They smile at me like I’m cute and call me sweetie. I prefer this over acting like I have leprosy, but I would really rather be treated like any other adult.

I want to live in a world where it’s not weird to say hello. Where people don’t think talking to me is social suicide because my knees are turned in or I’m in a wheelchair. I don’t want to worry that maybe someday my kids will be excluded because their mom walks funny and wears braces.

In this case, I don’t want my disability to change, I want the world’s view on people with disabilities to change. I would love to see a day when whether or not you can walk is as unimportant as the color of your hair.

Recently, a fellow blogger wrote a beautiful post, asking her little brother’s potential teacher if she would be able to see past his disability. Be able to see him for the beautiful person that she knew him to be. Read the full post here

I’m not writing this post to get sympathy or throw a fit. I’m writing this post as a challenge to all of us. A challenge to treat people as you would want to be treated. To see people in wheelchairs or with walkers just as you would see them if they could walk like anybody else. To recognize that people who walk differently or talk differently or have Down’s syndrome or autism are regular people on the inside, even if they appear differently on the outside. Even take it one step further and realize that someday, it could be you in that wheelchair. If it was you, would you want people to treat you differently than they do now?

So I challenge you to take a stand for equality. To decide that no matter what your friends think, you will be all-inclusive. Because equality is there whether we choose to recognize it or not.

5th grade

5th grade

Yep, someone actually said that.

The other day, my cousin, Shekinah, shared an article where people of different races share the inconsiderate things people have said to them or asked them about their race. Having the name that she has, and being Caucasian, people have said some bizarre things to her, and how her name ‘doesn’t match her ethnicity’. My husband, kids and I being a biracial family, people have said some pretty crazy things to us too.

But what really came to my mind were the memories of the crazy things people have said to me regarding my disability. So I figured I’d share them with you and we can all have a laugh.

I’ve divided the outrageous statements, and my reactions to them, into three main categories of who I hear from the most. These are bank customers (from when I worked at the bank), the grocery store, and social gatherings. Ready…. Go!

Bank Customers:

“Why are you hopping around like that?”

After informing him that I always ‘hop around like that’, I excused myself to the restroom.

“Why do you limp? Did you get bit by a dog?”

Seriously wondering what was going through his mind when that was the first conclusion he jumped to.

“Your legs are fake, right?”

Um…

“I saw another girl in a wheelchair the other day. It was kind of strange, because she was pretty like you are.”

Read: It is strange that a girl in a wheelchair would be pretty. Much less two of them.

Um, thanks… I think.

“Tell me the truth. Are you faking the limp to get people to do stuff for you?”

I said yes.

“It sure is nice of them to let you work here.”

Yes, it’s a charity job. I don’t do any actual work.

“Back in my day, you wouldn’t have been allowed to be around the rest of us. You’d have been kept in a special home.”

Well I better thank my lucky stars.

“Where’s the cripple girl that used to work here?”

I didn’t have my wheelchair that day. And yes, he asked me.

Grocery store

“I know a guy that has crooked legs like you. He’s still a good parent, just like you appear to be.”

Because I have defied the odds by having a handicap and being a good parent.

“Do you get good grades? Well, at least you got something going for you”

I was 14. My interpretation? ‘You walk funny and you’re not pretty, but someone will love you for your mind.

“You should probably see a doctor about that. I bet you broke something.”

I laughed out loud. It was a reflex.

“Must be nice to sit down all day.”

He had a cocky tone that implied I was lazy. Oh, if you had any idea…

“You need to make sure you get enough exercise.”

This was said by a complete stranger, who was about 30 pounds overweight. Thanks man, it’s a good thing I have you to keep me on track.

“Wanna race?”

I get that one at least once a month. It’s never as funny as they think it is.

“Do you know you’re in a handicap space?”

I get this almost every time I leave the house. Only occasionally do they actually say it. Usually they just give me dirty looks.

Social Gatherings

“They let you have a driver’s license?”

Read: You are in a wheelchair. You should not drive. It is a danger to society.

“What do you need a car for?”

See above.

“Oh you limp? I hadn’t noticed.”

We had just walked half a mile. This is like starting a conversation with someone of another race by assuring them that you’re not prejudice.

“You have kids? I’m surprised they let you adopt.”

My kids are not adopted.
But I would like to adopt some day. Why the assumption that I could not have kids, and that I should not be allowed to adopt?

I know my friend Kate, who has Spina Bifida, has had similar experiences, so I asked her to share some. To start out with, we’ll never forget the time I was pushing her in her wheelchair through a parking lot, and a lady, who was at least 30 (old enough to know better), was so busy staring at us that she ran straight into a lamp post. We both busted out laughing. We couldn’t help it.

Kate’s response:

20-30 year old guy in a parking lot: “You should let someone who actually needs it use that spot.”

(I wasn’t using my wheelchair.)

Older lady: “Walking is better for you.”

Walking through a parking lot (more than once): “Did you break your leg?”

A few different people: “You can drive?!”

Middle aged man: “Must be great to be lazy.”

Random guy: “You don’t need that.”

(I’m going to assume he meant my chair, but as he just walked away after he said it, I really couldn’t tell you.)

For the record, I ‘m not writing this post because I am angry (though I admit I was irritated by a few of them). I understand that some people were just curious, and did not express themselves correctly. Others were just ignorant and rude.

I choose not to be offended, for the most part. We can take offense at just about anything if we look for it. Personally, that would be a pretty miserable life.

My reason for writing this is so we could all have a good laugh. And maybe to point out that we shouldn’t judge a situation when we don’t know the whole picture. What’s that saying about when we assume? Something about a donkey…

Her response was so funny, I had to share.

Her response was so funny, I had to share.

dis(abled)

Sometimes my disability frustrates me. Sometimes I am not as optimistic as I claim to be. Sometimes I wish it would disappear.

I don’t always feel this way. I don’t usually wish I didn’t have CP or count myself unlucky because of it. A lot of time I don’t give it much thought at all. And when I do I am able to see the benefits of it instead of the downfalls. But every once in a while, I just wish it would go away.

The past week has been a hard one. Hard to stand up, hard to sit down, hard to sleep. Hard to carry the baby, change his diaper, give him a bath. Hard to get the dishes done, or the laundry, sweep the floor. Just the thought of getting off the couch is overwhelming sometimes. Not because I’d rather sit and watch TV, but because I know it’s going to hurt more if I get up. And while most everyone would think “Okay, so just sit down and relax.” I can’t. I don’t know how. Sitting on the couch watching TV is a waste of time to me. I’d rather be living my life than just watching someone else live theirs.

I want to have an impact on the world, but sometimes I wonder how I am going to do that stuck on the couch. I don’t want to sit and relax, I want to hike mountains, run marathons, build a house with Habitat For Humanity. I’m tired of offering to help with something, and then ‘warning’ them of my physical limitations. I just want to do what I want to do, and not have to think about whether I have the ability to do it.

And for the times I really do want to just sit down because it hurts too much, usually I can’t. There’s a diaper to change or a baby to chase or dinner to make.

Sometimes it makes me bratty. Sunday, I was a brat all day and I knew it. But I couldn’t change it. I took my wheelchair into church, because we were supposed to help greet and hand out bulletins. We were late getting there (because of my pain), so they already had it covered. I was frustrated that we were late (again) and missed out on helping because of my disability.

In the service, the baby started fussing. I realized that we forgot to check him into the computer for childcare when we arrived, so my husband couldn’t just go drop him off at the nursery. The baby needed to be checked in first, but Sal didn’t know how to do it. I instantly got irritated with him for not knowing how to do it. This meant I had to do it. The reason I didn’t want to have to do it? Pain. I can’t hold a baby and wheel my chair. So I had to get up and carry him. Trying to stand up, I stumbled on the footrests of my chair, and almost fell. We were sitting near the front, so I felt like everyone saw. I needed the childcare card on the key ring, so I asked Sal for the keys. When he asked “What for?” I snapped “Just give them to me.” Because I wanted to do things quickly and not have a conversation about keys while people were trying to hear the sermon. In hindsight, it wasn’t very WWJD of me.

So I took the baby and rushed out to the foyer. At the check-in computer, it would only give me the option to check out, not check in. I thought maybe if there’s someone in the nursery that knows me well, I can leave him anyway. Buuut then I realized I left the diaper bag, with his bottle, in the sanctuary, all the way at the front. I was not about to walk all that way past all those people and back with a crying baby. I looked at the keys in my hand and decided I’d just take him to the van and nurse him. The back seat has tinted windows and screens to block the sun, so nobody can see in. I hoped that Sal would notice I left the diaper bag and come to my rescue, but he didn’t. Oh well, I needed a time out anyway.

When we were finally done, we went back inside, but everyone was coming out because the sermon was over. Sal came pushing my chair. I sat in it, and we tried to make our way through the crowd to find my daughter. He asked me a question, and when I answered, he didn’t hear me (a common occurrence when I’m in my chair). Someone else heard me and they said “What?”, so I told them that I was talking to Sal, but they didn’t hear me clearly and said “What?” again. Frustrated that nobody can hear me because I’m so far down and there are a lot of people around, I turn around to answer Sal. He had a Soda in his hand and his hand was over my sweater, so when I jerked around, his hand slipped and the soda splashed. He made a loud smacking sound with his mouth, indicating he was irritated. That hurt my feelings (again, in hindsight, he was irritated that the soda spilled, not necessarily with me). I felt like “Well, I don’t wanna be in this stupid chair where nobody can hear me, but I have to be.” So I got out of the chair and walked.

On Tuesday we stopped at the store to pick up a few things. I wanted to take my wheelchair into the store, but the baby was asleep, so we needed the stroller, which meant I would need to push the cart. For the first time, I decided to use one of the motorized scooters the store offers. That way I could sit down, and there’s a basket on the front for the items we need. I’d never used one before, because I’m always afraid I’m going to run someone over or knock down a shelf, but now I had no choice.

I was able to handle it ok without running in to anything, but all through the store I kept getting head shakes and eye rolls. I already knew why; in fact I kind of anticipated it. People see me, young and thin, and think I have no business being on that thing. That I’m just messing around, depriving some poor old lady who actually needs it. Same reason I get dirty looks in the handicap parking space. The fact is if I were 77 instead of 27, or if I were 50 pounds heavier, people would think I had the ‘right’ to use the motor cart. But I don’t ‘look’ like I need it. And kids these days just don’t respect anything.

As one gentleman stood there staring with his hands on his hips, I thought “Say something. I dare you.” Again, admittedly not the attitude I should have had. Sometimes I just get fed up. Well trust me sir, I’d rather be walking around just like you.

We went to the store again yesterday to pick up some supplies for a Relay fundraiser I’m working on. I used my wheelchair. And again when we went to the pharmacy. And you know something? I wasn’t in a whole lot of pain last night. I was able to sit on a stool and make dinner without having a breakdown about not being able to make dinner (something that’s happened every night this week. And at least once a week every week.) So it looks like the simple solution is to start using my chair when I go to the store or do other things that require a lot of walking, even if I don’t feel like I need to. I don’t like it, but it’s the smart thing to do. It will help me function better when I have to be on my feet.

So there you have it. I don’t always see my disability as a blessing in disguise. Sometimes I wish someone else had gotten it instead of me. Someone that doesn’t mind sitting on the couch all day. But I have to remember that nobody has it perfect, and we all have problems we have to contend with. This is mine, and it’s not as bad as it could be. Something good will come out of it. I can still have an effect on the world, even if I have to do it from my couch.

Sometimes it's difficult, but this face makes it totally worth it.

Sometimes it’s difficult, but this face makes it totally worth it.