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.

“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.

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

Catwalk in a Wheelchair

I’m interrupting my CP Awareness series to bring you some breaking news: Yesterday I got to model in my wheelchair.

As some of you know, my uncle was diagnosed with cancer last January. To show our support and help fight cancer, our family has participated in Relay For Life the past couple years. Macy’s does a Mother’s Day brunch and fashion show to support Relay For Life. They use volunteer Relayers to model some of their new clothing. My daughter loves to be in the spot light, so she was super excited to volunteer. They said they wanted mother/daughter teams, and she really wanted me to do it with her, but I wasn’t so excited. Let’s just say she doesn’t get her love of the spotlight from me. I wasn’t so sure, but I didn’t want to disappoint her. A million things ran through my head, the first one being a clear vision of me tripping and falling in front of a restaurant full of people. So I thought, what if I modeled in a wheelchair? I wouldn’t be as nervous, there would be no falling, and I wouldn’t have to worry about how long of a ‘runway’ it was or whether there would be chairs behind the curtains or in the dressing room. I asked my aunt about it and got into contact with the people in charge of the event. Everyone liked the idea, so reluctantly, I went for it. We had a fitting at Macy’s last Friday, and the brunch and fashion show was yesterday at a local restaurant.

There were a few teams of models, including my aunt, cousin, and beautiful 7 month old niece, and the cutest, nicest, spunkiest little elderly lady I’ve ever met. I was pretty nervous up until the first couple teams went, and then I started to calm down. The weird thing is, in situations like this, it’s not the strangers that make me nervous, it’s the people I know. Am I alone in that?  I was pretty sure my mom was gonna start cheering and clapping (Love you mom!), but she didn’t. Somebody did do an “awww”. I hope they were doing it for my 8 year old… but I think they were doing it for my wheelchair.
The ‘runway’ wasn’t too long, but there were no chairs backstage. The fitting room was the bathroom, so there were no chairs there either. I wouldn’t have been able to stand that long, and I can’t get dressed standing up, so I’m really glad I did it in my wheelchair.
It was fun though, and Romi is already making plans for next year’s cat walk 🙂

Here are some highlights:

Romi and me before the show. Rock n Roll!

Romi and me before the show. Rock n Roll!

Macy's outfit #1. Just keep smiling!

Macy’s outfit #1. Just keep smiling!

 

Macy's outfit #2

Macy’s outfit #2

Outfit #3. The lady called it a jogging outfit. I thought it was kind of ironic...

Outfit #3. The lady called it a jogging outfit. I thought it was kind of ironic…

She liked this dress and jacket so much she used the gift cards they gave her to buy it after the show :)

She liked this dress and jacket so much she used the gift cards they gave her to buy it after the show 🙂

I could never be a real model; I like my chocolate too much. But was a lot of fun, for a good cause; and everyone, especially the Macy’s ladies, was really nice. The clothes I modeled were pretty, but honestly… I still shop in the juniors department lol. Maybe if I still worked at the bank…