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.