13

My room was pink.  I loved my cat Whiskers more than anything. She knew me – when I was happy, sad, when my friends were mad at me. I told her my secrets before I went to bed.  She purred and snuggled close. I had her from age 3 to 18 and I like to think she stuck around just long enough to see me off to college. 

I had a New Kids on the Block pillowcase. I was in love with Jonathan Brandis (RIP adorable boy). I’d wake in the morning, scoot down the big staircase to eat breakfast. My mom often helped me with my socks. I’d eat breakfast and she’d give me a ponytail.

We’d finish and my brother and I would head down the winding driveway to wait for the bus. I’d head out a little before him since his strong legs were faster.

The bus would come to screeching stop and the doors opened. My brother held my crutches as I climbed up and I held on to the seat tops as I walked to my seat. He handed me my crutches and made his way to the back, where the older kids sat.  I always felt bad that he had to help me. I assumed he secretly hated it but our parents made him do it or guilt because his body was perfect. Heck, maybe both.

I was 13. It is a terrible age but even worse when you have a disability.  Hmmm…where to begin…. 

School Dances
I can't dance and hated watching my friends do the things I couldn't.  They’d kick off their shoes and dance around in cute dresses. Sitting off to side seemed lame but standing in the center of dancing girls was not any better.  Those were the days I was crushingly aware that I was “different” - it sucked and life was not fair.

Cute Boys
I liked them but none liked me. That is not the age for taking risks. I’m sure even if one did like me he would have never told me – what if others teased him? I was afraid I would never have a boyfriend. Looking back now, 13 is young and who needs boys anyways! {wink} But at that age I felt old. I was missing out on the things other girls were experiencing.  I wanted a note slipped in my locker too. 

What Will I Be
I couldn't do a job that required lots of standing or a steady strong hand.  That ruled out being a doctor (oh yeah and the fact I took my math/statistics classes over a few times in college). I thought being a teacher sounded fun but I was scared of kids picking on me. Even worse the parents not thinking I would be good enough. I can remember thoughts of how kids might pick on they way I write when using the chalkboard or how every year I would have to explain my disability to a fresh set of kids and teachers. There was no way I was going to subject myself to a lifetime of that.  

School Lunches and Mean Girls 
The hot lunch lines at school and using crutches are not friends. I hated asking people to carry my tray. To top it off, in Junior High and High School it seems like us girls were always in "fights" so there were days when my friends were mad at me and I might not have help. It was easier to bring stuff from home. 

Envy
Dreams of wanting to run, jump, twirl, climb and feel really strong. I would see girls in track. Cheerleaders at football games. My brother climbing a tree. Little girls twirling in a cute dress. I wanted to know what strong legs feel like. That dream hasn't changed. 

With all that said, I’ve learned something over the last 30-something years. It’s not all bad.  Maybe we are the lucky ones? 

I like to think being born with a disability makes us amazing.

In the end it sets us apart and even though if you are anything like me - you would kill to just blend in – it’s a good thing. Our perspective is beyond the average girl, we can give an hour long presentation on using crutches in all terrains, eating with our feet, opening doors in a wheelchair, using a stick to type, we know pain and we are quick to notice when people hold their bodies funny and are secretly in pain/uncomfortable, we know how to guide conversations and turn awkward back to okay and we know how to ask for help.  

Our compassion is huge and our determination is out of this world. Some will call it stubborn. We will see it as survival.  We will be more than a pretty face and some day boys will want to know us. Our personalities and substance will matter. Employers will be proud to have us because we aren’t lazy and we care.  Mean girls grow up too. They will end up being some of our best friends. Our kids will have mommies with magical walking sticks or hot wheels. They will grow up seeing determination and zest and I pray that they soak it in too.

So for those of you out there who wonder, wish and worry about what’s to come – that is what I’ve discovered in my short time here in this world. And I like to think the best is yet to come.

chick fight!

Today was one of those days. When you just want to go back to bed. But you can't - you have to suck it up and go about your day.

My headband totally gave me a headache. It seemed cute at home and really lame in the bathroom at work. Not worthy of a headache so I took that baby off and dealt with weird smooshed hair.

The stitching on the elastic band of my cute flats broke. So before I left work I did what any normal person would do, I grabbed the stapler off my desk and did my own quick "fix" to get me home.  Sigh.

I got to daycare and planned to take the handicapped spot in hopes of avoiding extra steps and having staples stab my foot. Tuesday is just too early in the week to deal with blood.

Parked in the handicapped spot was a seemingly healthy, young woman sporting leggings, tall boots and taking her sweet time buckling in her child. It was obvious that she was parked there out of sheer laziness. I instantly hated her.

Maybe it was my headache. Or the fact I had to go to the bathroom insanely bad. Perhaps my despair over my shoe. Fear of the staples puncturing my flesh.

I like to think it was a combo of it all. I wanted to turn into Hulk or a WWE wrestler. I had crazy urges of running up to her and knocking her down, pulling her hair and calling her lazy. I'd dent in her car door with my super hero strength and run away and hide in my car.

Rest easy, none of this happened. I parked on the street and walked.

I must confess I took a picture of her car. Made me feel better, like I was going to send it to the police department and they'd stop over at her house and school her on how to be a good person...

Looking forward to a fresh start tomorrow. As for tonight, I'm sending myself to bed.

ummm...I want more

My hair gadget from Australia arrived. It worked on the first try, not the prettiest pony on the block, but it served its purpose. I have been trying different ways of doing it to see what works best. Leaning back on couch. Laying on the floor. I have found that being slanted is key to help the hair fall in the right direction and have my hands angled correctly.

The drawback is the long string. What the heck should I do with it? I struggle to wrap it around my pony tight enough to look decent and don't have the strength to tuck the end so it stays.  Since I have only worn it around the house, I just let the long string hang like a tail. One time it got stuck in the couch cushion and yanked my hair when I stood up. Another time I got it caught in the bathroom door.   

After developing a slight fear of strangulation from this elastic bully, I started tucking it in my shirt.  This instantly decreased my odds of whiplash but I found that the pony slowly slides out from the string being tugged on by my shirt.  Lame.

I appreciate the independence of being able to pull my hair back on my own but I still want more. For now I am holding on to my hopes for a pony machine. Always dream big. 

Amazing AMCers: Meet Tracey Schalk

My fellow AMC buddy Tracey shares my ponytail woes. Well, she shared them. This is now another thing she mastered.

Limitations are often the catalyst to conversations where great ideas flow.  It inspires creativity.  It pushes you to try.  No one likes to be told no.

I love Tracey's video showing how she found a way to pull her hair back without help.  It's awesome! I want to master this too - I recently ordered the 1-Up Hair Tie from Australia, I'm hoping it works.  Stay tuned for updates!

ponytails

Ponytails. You see girls pulling their hair back as they walk down the sidewalk. In the locker room before gym class. Or even the dreamy DeAndre Brackensick from American Idol who whipped his curly locks into a perfect ponytail every week.

You may have never given it a thought. It takes seconds to do. Unless you have AMC.

We are all different but most of the AMC ladies I connected with have some variation of bent hands, elbows, limited shoulder range and weak hands/fingers. This puts a big fat damper on our ponytail dreams. 

So just like I covet those who can walk, pull a suitcase, talk on the phone and wear heels at the same time – I also want to be you, the girl who easily throws your hair back in a cute pony.

I dream of a machine. It would look kind of like those big hair dryers they once used.  But it would have a vacuum force that would suck back my hair in the perfect fashion (there would be settings…high pony, low pony, pony with volume on top, pony with volume and thin headband) and then robotic fingers would wrap the elastic band around the hair. It would be so awesome. 

I found things that work for around the house. Clips, headbands and combs are easier to do.  They give you a break from the hair but totally not something you’d sport in public. Last time I had my hair cut the stylist started to flat iron it and I was like, “ehh could I actually have a ponytail?” She looked at me like I was off my rocker. She had no idea that having a pony was a treat.

In our AMC Facebook group this pony discussion led to some awesome ideas. I’m hoping that more will come from my stylist friends and family.  We need your help!

Top 5 Tricks I Learned From Fellow AMCers:

1. Lay on edge of bed or couch – gravity helps pull arms and hair back
2. Take a long string and put around neck, lean back and pull the string up. Tie a knot, cut the extra string.
3. Pull hair to the side and braid (I personally think this would be hard or maybe I just need longer hair)
4. Hair sticks
5. Ask for help

Most of us hate asking for help – even though the world doesn’t mind – we do. You also don’t want to be picky because you are just glad that they pulled it back.  So you might get stuck with a bumpy pony or one that is not high or low enough.

I joked in the string of comments that AMC girls need to marry stylists.  However, I didn’t marry a stylist but I am eternally thankful to have found a guy who can pull off the perfect ponytail in 30 seconds flat and is not too macho to do it. With every ponytail I love him a little bit more than the day before.

I’m still holding out for my machine though. I think it would make the world a better place.