Thursday, January 29, 2015

Reinventing the Wheel

Written: 2/26/12

As a child growing up with Cerebral Palsy, dance was not something on my radar. I loved being active. I envied my brothers and sister, who all played team sports. I loved running around in my reverse posture walker. At 13, when my parents turned up the living room stereo and danced with each other, I busted an awkward move with my Canadian crutches - standing with one, pointing with the other.

It wasn't until I was 18 that I really began to notice dance. At the church I'd started attending, dancing and singing were synonymous. It was not uncommon for churchgoers to move around the floor in the sanctuary, as the music led them. It was beautiful. I loved singing and I longed for the ability to move freely - for my body to be able to express the joy I was feeling inside. One Wednesday, when I was early to youth group, this longing overcame me. It was late afternoon, and sunlight was streaming through the church windows. It was completely empty but for my sister and our best friend, practicing in order to lead the youth worship team in a few hours.

I don't feel this longing very often, but as I sit here in the sanctuary, I just want to run and dance and jump! I don't miss it very much, but right now I do and I am! I want this so much! I can't even tell you how I want to just throw these crutches aside and go running across this wide open empty floor... I wrote, to try and deal with the sudden rush of feeling. I battled anger and frustration. I fought feeling trapped in a body that physically could not do what I wanted more than anything to do.

The next week, I wasn't crazy about returning to youth group and having the sunshine and openness there like something so unattainable. I remember ducking out, probably to get away from all the people dancing. It hurt too much. To put off returning, I stopped at the water fountain on my way back to the sanctuary. When I glanced up, honest to God, there was this tiny toddler standing there. A baby girl, maybe a year old. She was exceedingly common, but what she did will stay with me forever. She was completely taken by my metallic blue and black crutches. She kept touching them. Running her hands up and down them so gently, and just staring at me, smiling. Today, the girl is probably a teenager. She has no idea what a gift she gave me by accepting about me what I could not accept about myself. 

From that moment, a week earlier, dance was inside me. In a way, I don't think it has ever left. Over the next ten years, dance became a more obvious part of our culture, thanks, in large part, to television shows like So You Think You Can Dance. Thanks to that show, and its subsequent tour, I met contemporary dancer, Jaimie Goodwin. When she moved, it moved me. We stayed in touch over the coming years, and I even connected with her sister, Cara. 

One morning, in late July, 2010, I woke from a dream so vivid I wasn't sure it was a dream at all. I was in a gymnasium and it was very dark. I felt heavy with grief. In my dream, I was without crutches, without a wheelchair. I was crawling out onto the main floor where a young woman was dancing. There were crowds of people along the sides, and music playing. For some reason, I grabbed onto the dancing girl. Suddenly, we were doing improvisational dance. Somehow, my weak legs were able to hold onto her, and I arched my back, stretching toward the floor, while she spun us in a circle. The floor was gentle, like an old friend, not rough, like I feared it might be. On and on we went like that, until I woke up wanting more than anything to reclaim the feeling I'd had. Not of being fixed, but of being that free.

I wrote to Cara and told her I'd had a dream that I could dance. I told her how freeing it felt and asked her how it felt when she danced. Days later, I saw this:

Dancing is amazing, but it's not the most amazing thing in life.

Love is....

And you've got soooooooo much of that. You are more blessed than most!!!!


It was moments like these that prepared me to observe a dance workshop, taught by Jaimie in June of 2011. For the first time in years, I could watch the gym full of kids stretch and dance and feel grateful that they had the ability to create something so awesome. For the first time, I was able to watch them without jealousy. I witnessed my cousin, Jake, being picked out by his peers as someone who brought something special to the contemporary choreography, despite this being his first dance class ever, and I was so proud.

More than that, though, I was able to realize something else. Everyone might not able to dance the same...but everyone can dance. My body might not be able to dance, but my words can. My little brother, Tanner, "hates writing with a burning passion" but he is a phenomenal athlete. Everybody might not possess everything they want, but I firmly believe that everyone has what they need for this life.

These are a few lessons that I took away from the dance workshop:

Fingers, Feet, Focus:
To be a writer, your fingers have to move, at least figuratively. In order to start writing, you just have to do it. Do your best to keep your feet on the ground and have a focus for the story you want to tell. It might be broad, but it will matter.

Push Yourself:
Be your own motivator. Don't be strictly reliant on outside approval for your own feelings of success. Conversely, don't throw in the towel, because your first attempt was not a success. Keep trying and know there is always room for improvement.

The Importance of a Strong Core:
Know who you are and be confident in that. If you are not, then do your best to get to know you. Be willing to share what got you from point A to point B. You never know how your own journey or your own story, may impact someone else.

Hold Your Head Up:
The neck is a very vulnerable part of the body. At the workshop, Jaimie taught the kids that if they held their neck up it really changed the choreography. And that because it's a weaker part of the body, if they were confident enough to show that, it was a great thing. Not everything you share has to be deeply personal, but if you find a way to "show your neck" in anything you write, it has the ability to elevate your writing. 

Write Your Name Differently Each Time:
During improv, Jaimie started by having the class write their names with different parts of their bodies, facing different parts of the room. There are only so many ways to say, "Hey, my name is Tonia. This is who I am." But try to keep it fresh, while retaining your own integrity. Maybe look at your life, or the story you are telling from someone else's point of view and start there. Maybe close your eyes, and share the first thing that comes to your mind. Even the most mundane detail about you might be moving to someone else. (Any dancers reading this? Any runners? Anybody play Little League? How does it feel?)

Connect and Do What Comes Naturally:
The most important thing is to connect with the topic at hand. Even if you have to rethink your original plan, and even if it takes a few days to formulate...good things are worth the wait. And we've all heard this time and again, but no one can write your own story like you can. As Jaimie shared with the kids, "If you don't want to pirouette, don't pirouette." Write what's true for you, whether that comes through most clearly in fiction, poetry, humor, nonfiction, angst or whatever. Just trust yourself and move.

Hit that ball out of the park. Pirouette or don't. Dream. Write. Love. Be.

Everybody has their own journey. Don't be afraid to share yours.

Photo: Me, Jake's friend, Jaimie, Tara and Jake.
Dance workshop - 6/11/11

Some Assembly Required

Written: 1/27/12

It's weird, isn't it, the things that catch our attention at the prospect of a baby visiting? My honorary niece, Eleanor, (the daughter of my best friend) brought about this kind of crazy attention to detail when she was born last April. 

When Eleanor was 5 months old, we offered to baby-sit every other week. Suddenly, my tiny apartment seemed overrun with hazards. I asked Tara to purchase outlet covers when Eleanor was still months away from crawling. The prospect of watching her on my own for two hours had me concerned. Though I have been an older sister - and thus around babies for most of my life - Tara usually did the delicate stuff. The handling of the baby. The taking of the baby from one place to another. Now, it would be all up to me.

I was grateful for my manual wheelchair, but knew it could use some work to be the best it could be for little Eleanor. Therefore, I set about finding pieces of my chair I had discarded. The guards that I previously saw as protecting clothing from my wheels now protected little fingers from the spokes. I also found the seatbelt, which had been more a nuisance to me than anything else had. I got out some basic spray cleanser and did my best to clean the chair itself. Then, I went to work, trying to figure out how in the world to install the seatbelt and guards. It took more time than you'd think, as I do not have anything resembling a mechanical mind.

In the coming days before my solo day with Eleanor, I searched for any information on parenting with a disability. I found nothing explaining how someone in my situation might take care of a baby, and I was shocked. Instead, I watched videos of mothers who were congenital amputees - changing diapers with their feet. I told myself, if they could do that, I could definitely do this.

I practiced handling a newborn baby doll. I practiced picking it up and laying it down. Before I went ahead with childcare all alone, I had Tara there to observe my baby-handling skills. The goal was simple. Pick Eleanor up and lay her down in her Pack-n-Play. Thankfully, the mattress wasn't too low and I was able to reach her, no problem. The seatbelt proved useful for the first time in years, anchoring me, while I handled her.

The work I did on the chair seems minimal, and it probably is. However, it's significant. When Eleanor goes about contorting herself in awkward positions to check out my wheels, my brakes, or my seatbelt strap, it's absolutely necessary to be belted in myself so I can hold onto her while she explores everything. 

She loves my wheelchair, so much so that I'm not sure she recognizes me when I am not in it. When Eleanor arrived yesterday - dressed as the cutest, tiniest 9-month-old polar bear - she stared, trying to figure me out while I stood with my crutches. However, when I sat in my chair, she smiled, showing off her two bottom teeth.

Babies don't come with manuals, but sometimes it's better to figure it out as you go. 

Photo: Eleanor's tiny newborn baby feet at 6 days old.

Insight on My Trach

Written: 11/4/11

I have no use for a tracheostomy now, but for the first five years of my life, it was vital to my survival. I was born 30 years ago, nine weeks premature, with a dangerously narrow airway. 

A tracheostomy - or a trach as my family called it - is a small incision through the neck and into the trachea. A tube is placed there to, primarily, keep the airway open. My trach also had other functions: if I was sick, it secreted mucous like a second nose. Also, it was just plain reassuring to have an extra opening to breathe through. In fact, more than twenty-five years after I had the hole surgically closed, it still feels a little bit wrong not to be able to breathe through my neck.

When my sister, Tara, and I went to bed at home, the first night without my extra airway, our dad came in and had a serious talk with us (after we said our prayers, and I reprimanded Tara, as always, for saying "Lord Jesus." I was of the firm opinion that the pray-er could only say "Lord" or "Jesus", not both.) Actually, the talk was more a series of directions for Tara. I just happened to be there, listening. 

As an LPN in his early twenties, our dad lived in a world of medical crises - and had likely heard the harrowing story of me as a tiny three-month-old being rushed back to the hospital as my airway started to close the first time they attempted to take out my trach. The second time, no chances were taken. I had my trach, with a very narrow tube - so it would have less chance of affecting my vocal cords - until I was five. The small hole was left to close on its own, but never quite managed to do so. I was around seven years old when it was finally stitched closed and I experienced breathing like most everyone else. 

"Now, if she starts making any noises, I want you to come and get me. Or if she starts to turn blue. Do you understand?"

Tara nodded seriously, always my protector. Always playing the "big sister" though in reality, she is just 15 minutes older than I am. 

It was an odd conversation to be present for, and I don't remember being particularly anxious about things going wrong. But something must have seeped into my seven-year-old consciousness. That evening, like most others, Tara and I prepared to stay up "late" and play pretend, where she was always the hero. I was the one in peril, who needed saving. I wanted her to promise me that she would wake me up if I fell asleep. I made her promise to come climb down from the top bunk above me to shake me awake. To tell me if I talked too much. Or wasn't talking. Or said something wrong. 

"Okay," Tara answered dutifully. Again and again. Until she sounded less devoted to my well-being and more irritated at my irrational demands. Finally, she fell asleep.

I had no problems that night or any other, though I still have an airway so narrow that it often sounds as if I am sucking all the oxygen out of a room when I yawn suddenly. 

I still have the scar - a couple inches long in the center of my neck - and shaped like a smile. It's an identifying characteristic for two little girls who dressed and looked so alike that in certain pictures even we can't tell each other apart. 

I don't need the trach today, but I'm grateful to have had it. Of course no one wants a tube protruding from their neck for their first five years. No one wants to wear hankies like a cowboy to catch their neck snot, but considering the alternative, I know it was worth it. 

I don’t remember traumatic trach changes, when the tube had to be suctioned and changed. I still have my voice. 

What was needed, I kept, and what I had to let go of, I lost.

Rolling Stop

Written: 4/26/10

Bathrooms are my nemesis. This is because they usually require me to stand, and use my upper body simultaneously. And this leaves me without any way to keep my balance. At the least, it takes a while. And at most, there's pain involved. 

My grandma's toilet is set so far off in no-man's land that there is literally nothing nearby to grab hold of. It takes a ridiculous amount of time for me to take care of things. Her bathtub produces a similar conundrum.

I could step in okay, holding onto the wall for support. But getting out? Well, that was another story.

At around eleven years old, I had rarely, if ever, bathed there, and now I knew why. I glanced around to see what was available as a supportive surface. The toilet was out. It faced the wrong direction.

And there was nothing else.

Finally, I had an idea, and planted my hands on the mat outside the tub. I crawled out, wheelbarrow-fashion, and considered it a victory. 


Outside of the bathroom, my family has never been the kind to ignore a sign of someone in need. And when I say someone in need, I mean me. 

At eight years old, Trent hauled me up around the waist toward the binocular-stand on vacation. When Mom asked what he was doing, he replied simply, "I'm helping."

My mom will still wrap her arms around my waist, using her tiny five-foot frame as a counter-balance for me, while I navigate the garage steps.

Years ago, I went to Tanner's elementary school Track-and-Field Day with my dad. I had taken my wheelchair, and it didn't take Dad long to notice the lack of ramps and general accessibility outdoors.

"This is just stupid," he muttered under his breath, mindful of the school full of children at various events. "How the hell are you supposed to get anywhere?"

"There's a ramp over there."

After hours spent searching for ramps or closer access to the events, Dad had enough.

"I'm writing a letter!" he insisted, ignoring my many attempts to tell him that this was just the way things were. 

And then there's Tanner.

We were in Mexico, on vacation when he pushed me up a steep ramp. I knew he was strong, but I also knew he was only ten, so I asked if he was okay or if I should help push.

There was a brief pause, as he kept pushing. Then he asked, "How much do you weigh?"

Unoffended, I answered, "I don't know... Around 100 pounds? Maybe a little less. Why?"

"Oh, yeah! I could lift you so easily! Okay, get on my shoulders!" he said, sounding proud, and completely serious.

Tanner wasn't always so willing to help me, though. When he was six, I asked him if he would please take my plate and put it in the sink for me. He barely blinked before he asked, "Well, why can't you just push it across the floor?"

Little did he know, when I was a lot younger, I used to make sandwiches without a plate at all. Just bread on the floor and a jar of peanut butter. It took too much time and energy for me to make a sandwich at the counter, where I had to always use one arm to support myself, no matter what I was doing.

In my kitchen, counters extended around nearly the entire room, but abruptly stopped just before the dining room table. No matter how far I stretched, I couldn't reach the table, and still hold onto the counter.

But there was plenty of floor space to be had.


Every bathroom has its own difficulties. 

If it has throw rugs, those are a slipping hazard. Outhouses in the rain pose the same problem, except my crutches slip on the filth that covers the floor. Mud and shoe-germs and God knows what other kind of germs. 

When I worked at a summer camp I never took a single shower. It was impossible, with no railing and nowhere to sit. Instead, I washed up at the bathroom sink, when the campers were out doing other activities.

It was okay at first. But the summer I worked ten weeks there, I came home on weekends, dying for a real shower in a place where I could use my shower chair, or to soak in a tub that I could actually get in and out of.

Unfortunately, both bathrooms at my parents house were being remodeled. The shower downstairs was completely unusable, and the upstairs one and now had a sliding shower door installed on the tub's edge, and no railing attached as there had been my whole life. 

I could get in. Barely. That lip, and its extra inch of height was almost insurmountable for my spastic leg, but I managed.

As usual, my trouble came in getting out. This time, I could manage to step out with one leg before I had to figure out how to get my other leg out.

I put my hands down and tried to army-crawl, which worked so well every time I needed a fast escape from a cumbersome tub.

But it was no use. The track for the shower door made it impossible.

Finally, I gave up and set about jerking my leg over the side to freedom. 

I had bruises for a month afterward, but at least I was clean.

But it didn't take long for me to get tired of it. I was done with getting bruises on top of my bruises, and looking like an abuse victim, when I was really a victim of remodeling. So, I did something about it.

I moved out, to a place with a shower.

Life In The Key of Cerebral P.

Written: 3/21/10

Popsicle Takedown:
I've never had much by way of balance or core strength. I was twelve when I realized that I was no match for a hungry seven-year-old.

It was a hot summer night and we had all come inside after doing a lot of running around. Mom and Dad let the four of us have a snack before sending us to get ready for bed.

I grabbed the last orange popsicle.

My mouth had barely closed around it, to savor the cold, sweet flavor, when Trent plowed into me from the side. 

"No fair!" he cried angrily. "I wanted the orange one!"

Apparently, this was a big enough injustice that Trent decided he had to take me to the floor in order to exact his revenge.

I was shocked, but unhurt as I climbed clumsily back into my chair.

Trent, though, was inconsolable. He offered me a tearful apology, and was banished to his room without a popsicle. 

I took a long lick, reveling in the treat, and the fact that it was still in one piece and not broken on the floor. 

My balance and strength might have been lacking, but my grip was amazing.

Proper Technique:
It was never easy for me to fight back. And I never especially wanted to. In fact, I was a teenager before I fully took advantage of the arsenal of defenses I had at my fingertips.

I discovered that my wheelchair could be used like a tank and it came in handy for ramming into my sister when she wouldn't let me out of a room. My crutch became a bo staff on my annoying little brothers and I didn't hesitate to use it like one.

Tye could be especially irritating and relentless. He would hide in the laundry room just outside my bedroom, and jump out, yelling "Boo!" just to see my exaggerated startle response to unexpected noise. If I could catch him, I'd smack him in the legs. I'd aim low on purpose, knowing that getting hit with anything heavy as my blue metal crutch was bound to hurt.

And after all, I didn't want to kill him, just to get him back.

It was no secret that I wasn't a physical match for any of my siblings in a fight. But once I learned to use what I had at my disposal, life became a little easier.

And a little more fun.

Panic Response:
I couldn't swim. Not at thirteen, and not ever.

When a wave I didn't see coming knocked my inner-tube end over end across the ocean, I didn't feel like I was dying. It was only when I settled at the bottom, like a stone, with the water mere inches above my head that I started to panic.

But then, I heard Tara's voice, muffled by the waves and the water in my ears:

"Help is on the way, dear!" she called, in the perfect English accent of Mrs. Doubtfire. Then, she set about trying to save me.

"Tara, help me!" I kept gasping, whenever she could lift me up for a second to get a breath.

I clung to her. Pulled on her. If this had been wrestling, my 70-pound, all-muscle self would have won the match for sure.

Finally, Mom noticed us, and got me up. Between her and Tara, I managed to walk back to shore. It was then that I heard Mom whisper something to Tara:

"Fix your bathing suit."

Tara and I noticed at the same time that my complete terror had had an unfortunate affect on my twin's modest, black one-piece, pulling her top down. There had been so much commotion, none of the three of us had noticed until we were walking toward the beach together. The beach full of people.

Embarrassed, Tara fixed the problem.

I was deposited on a beach towel, still trying to get rid of the saltwater taste in my mouth, and the burning in my eyes and nose.

"You want a hot dog?" my dad asked, clueless, distracted by the grill.

Startled, I accepted it and took a bite.

I probably needed the protein anyway.

Pressing Issue:
If the stairs were broken, there would be a note. I guarantee it.

But when the elevator broke down after I made my way to the second floor of my residence hall, I received no notice at all. When they plowed the snow on campus, it was piled in unnaturally huge balls blocking the ramps onto the sidewalk.

Now I was stranded in the second floor computer lab as it neared eleven o'clock when the computer lab closed - pressing the elevator button to no avail. All I wanted to do was return to my dorm and go to bed, but instead I had to wait for a repair man.

By the time it was running again, my butt was numb and my legs hadn't had natural circulation in several hours.

I wish I could say that things went smoothly the rest of college, but they didn't. I was late to classes due to snow, and stranded in the middle of slushy streets.

But on the up side, I was never stranded upstairs again.

And luckily for everyone else, the stairs remained in perfect working order.

Power Struggle:
I have no depth-perception. 

Proof of that was never more evident than when I hurried out of a building in Washington DC, determined to get a head-start, so that my family wouldn't have to wait for me. I had no idea just how ahead of them I might be by the time I came to a stop.

What I thought was a flat expanse was, in fact, set at a dangerous incline. Before I knew it, I was careening down the unfamiliar sidewalk, doing my best to avoid innocent people, walking by. But whenever I tried to slow myself down by grabbing the rims of my wheels and squeezing, the friction from the speed burned my hands.

My heart beat crazily, when all of a sudden, I heard footsteps. I felt a steady resistance behind me, as somebody pulled hard on my handle bars. Before I knew what was happening, the chair was on its side. I was seatbelted in place, suspended in the air.

That's when I noticed Trent, picking himself up from the ground, where he had fallen, in his fight to stop my runaway chair. 

"Trent! What did you do?!" Dad snapped probably flashing back to the kid three years earlier who had taken me to the floor for eating his dessert.

"No, Dad, he saved me," I said, knowing how ridiculous it sounded.

Trent was ten years old. He was more prone to daydream his way through life, thinking of new and interesting things to build with whatever he could get his hands on. Trent was apt to make huge, impressive messes that took days to clean up. Saving his older sister wasn't on his radar.

"Oh," Dad said, sounding confused, as he righted my chair and me. "Okay, then."

And as is typical in my family, we went on, as if nothing was amiss. Only this time, I lagged behind on purpose, to make sure I didn't mistake a slant for level ground.

This time, I followed Trent.

After all, what are little brothers for?

Mom (left), me (center) and Trent (right) a few days after he saved me.

Padded Landing:
When something happens, I'm rarely the first to react. My reflexes are just too slow. But this once, things worked out to where I could be of some help.

My uncle, aunt, sister and I were in the high school cafeteria, waiting for my cousin's choir concert to begin when my uncle stumbled.

It just so happened that there was a chair perfectly placed behind him to cushion his fall.

Of course, I was in the chair, too, but I wouldn't have had it any other way.

Because of my fortuitous placement, my uncle landed not on the floor, but squarely on my lap - the bulk him on my right leg. Pain shot through my knee, ankle and heel as my leg was torqued uncomfortably against the footrest of my chair.

Suffice it to say that I love my uncle, but he is not a small man.

I clamped my hand over my mouth.

"Are you okay?" he asked, trying to shake off any discomfort at the public spectacle with a smile.

I nodded, my hand still in place. I may be physically small, but I wasn't about to start crying in front of a room full of people.

I gritted my teeth. I breathed. I watched the concert I had come to see. I got through the evening in one piece. 

My uncle was just fine.

And so was I, with plenty of ice and Tylenol at my disposal.

Sometimes, it's just about being at the right place, at the right time.


Written: 3/15/10

I had no idea Kayla was watching.

The little girl with her impossibly long light brown hair in braided pigtails. She had such a somber face, her hazel eyes always watching and studying. She dressed like she was in a time warp, in a long skirt, and a conservative blouse so that she looked like a little Amish girl, or a milkmaid. And she couldn't have been more than eleven. 

Then again, I shouldn't have been surprised that Kayla was watching me. Tara and I were friends with her older sister, Danielle. Whenever we talked, Kayla was always looking in our direction, no doubt wanting to be a part of our conversation.

That Sunday was no different from the others in the past year I had attended the huge, beautiful church set so far off the road in the woods it was hidden from view. Worship was plentiful, complete with dancing and praying and crying. Then a message was shared, and finally, the congregation was excused. But usually, this was closely followed by an announcement that anyone who wanted prayer for financial concerns, depression or physical healing was invited to come forward.

I remained seated. Ever since the healing conference I had attended had gone inexcusably wrong, I made up my mind that I was fine just as I was. Cerebral Palsy, crutches, and all.

But from her seat across the sanctuary, Kayla was concerned, and leaned over to whisper to a friend of mine, who was beside her.

"Why isn't she going up? Doesn't she want prayer?"

No doubt, in her mind, prayer was a help. Physical healing would make me better and happier. The fact that I would decline it confused her. 

My friend explained gently that I didn't want healing. That God didn't heal everybody, but that He made me perfect just the way I am. 


Infiltration was my least favorite night game.

But high school week at the Bible camp where I worked, meant that Infiltration was going to happen. The kids were divided into two teams, and the goal was to try and bring back multiple items back to a certain location without getting caught by guards (counselors) who were positioned around the building - making their entrance with a canoe paddle, popsicle stick, or any other random item - impossible.

If they were caught, the kids were sent to jail, for a predetermined amount of time.

Traditionally, I was the jailer. This meant, I was set up in the dark, unoccupied part of the chapel with a stopwatch, freezing, and struggling to keep track of which campers' ten minutes were up, and which ones still had time left.

But my second year working there, Andrew took over my position. He was a year older than me, with light blonde hair and dark eyes. He was definitely handsome, and also had a sense of humor, and deep compassion that we all appreciated. He also possessed a deep intelligence and knew the Bible admirably well. 

Andrew had Muscular Dystrophy, which affected his balance and coordination. At camp, he rode a blue motorized scooter. On a purely selfish level, it was wonderful to have someone else on staff with a physical disability. It meant that I didn't stand out, and I didn't have to stand alone. It was a comfort to have him there.

I was elated to be free of jail duty, until I realized I would be at headquarters, which was the recreation building - the farthest thing away from the rest of camp - helping count up the random things the kids were turning in.

By the time the game was over, it was 11 PM and I was exhausted. Counselors only got two one-hour breaks a day. We were on-duty all the time. At least with high school kids, I didn't have to worry about homesickness, or bed wetters or any of the other commonalities with younger kids. 

The lights were flipped in the rec building, and it was flooded with light. The garage-style door was raised, and I squinted. It was so black outside, I couldn't see my hand in front of my face.

"Oh, no..." I moaned, laughing nervously, talking as much to myself as to any of my several coworkers who remained. 

"How the heck am I gonna get back now? I can barely walk across the grounds when it's light out. I tripped over a pile of gravel in front of my cabin door this afternoon! It was totally obvious..." I went on, seriously worried for my safety.

All around me, other staff were striking confidently into the inky darkness, heedless of the uneven ground, the hole that had yet to be filled in, or the sludge-filled moat that separated the girls side of camp from the rest. All hazards. 

Instead of leading the way on his scooter, as he had past weeks, this time, Andrew drove up beside me and maneuvered his body so there might be room for me to ride as well.

"Get on," he said, in a tone that left no room for argument.

"Are you sure?" I asked, knowing that my Cerebral Palsy affected my balance considerably, and one of the hallmarks of his form of Muscular Dystrophy was in balance. I imagined us both toppling off in the night, while his scooter continued to drive, boasting a bumper sticker that read: IN CASE OF RAPTURE, THIS VEHICLE WILL BE UNMANNED.

"Yes. Come on. Somebody will carry your crutches."

So, I climbed on. 

The last thing I expected was heckling.

Calls of, "Ooh, Andrew!" and "All right, buddy!" were heard from the remaining staff members.

"I'm just doing a sister a service!" he snapped, and we carefully headed out, each hanging onto a handle.

We didn't crash. We didn't fall off. He got me safely to where I needed to be, just as he promised.


Camp was something of a summer tradition when I arrived at a fellow staff-member's house to carpool the hour-and-a-half north. Several had spent the night there, and the first person I saw upon climbing the stairs, was Ryan.

I had known him since he was fifteen. In fact, my first week on staff, Ryan was a camper. He wore bright, Hawaiian-style button-down shirts and he was a pale, skinny little guy with a head full of curly copper hair. 

If I ever wondered where Ryan was at camp, he wasn't hard to find. Usually, he was a row behind me in chapel, using the back of my pew to keep drum beats. I was used to the deep congested cough that came with Cystic Fibrosis - something he considered his greatest blessing. 

I was used to his sarcasm, his wit, his talk of death with the same casualness that others might discuss an upcoming test or exam. I was used to his crazy antics, eating chunks of butter out of the dish, offering fellow campers some digestive enzyme pills that "he didn't really need" and telling them passionately that "Jesus wants you to have a good digestive system!"

In the coming years, Ryan beside me, as a coworker. He would hold a door, or crack a joke. Once, he convinced his entire cabin full of seventh grade boys that he had fought in the Vietnam War. On my birthday, he serenaded me with a morbid song about being one year closer to dying. I burst out laughing, because it was Ryan.

When I walked in and saw him as we all prepared to go back up to camp, Ryan was wearing his vibrating vest as part of his respiratory therapy. It was a common sight. So, I greeted him, and went on.

"Okay! Let's get going!" someone called.

I started back down the stairs, only to discover that I was in trouble. I had been rushing to rejoin everyone, and hadn't fully dried my hands after washing them. The railing was on my right side, and that hand was known to be a little more spastic. I couldn't even sit down to scoot.

"Um...guys?" I called to the group of ten gathered around the door.

"Oh, do you need help?" someone asked.

"Yeah, I do," I said, because it was either admit it, or take a nosedive.

There was a murmur, but no one moved. I heard someone offer "piggyback ride" like it could be conjured out of nothing.

"I'll help you, Tonia," Ryan offered, crouching, with his back to me. "Hang on."

I did so, hesitantly at first, and then stronger, because I didn't want to be dropped. 

His body shook the whole way down the stairs - he was slight, and possibly less muscular than I was - weaker from the battle to simply breathe. Still not yet eighteen, Ryan was a true gentleman, and the only one to step up and offer to help.


I had no idea that, ten years after Kayla watched me in the church sanctuary that Sunday so long ago, I would consider her one of my closest friends. But she is, and has been for the last few years. 

One August, she invited me to the State Fair with her. 

Two girls, closer to my age were also going, and I agreed, leaving my crutches behind, and opting for my manual wheelchair which could be dissembled and put in the back seat of a car.

The process of taking apart the chair was more complicated than I had thought, but the girls managed it, and finally we were on the road. 

"We have to stop by church and pick up Bekah first," Kayla told me, and I nodded.

So, we did. 

But I wasn't planning on an impromptu bathroom break, once we pulled into the parking lot. I knew I had no way in, unless I could convince the girls to somehow put the chair together for me to go in and take it apart once I returned. It was too much hassle, and I sighed, wishing I had thought to bring my crutches in case of unforeseen circumstances like these.

The other passenger, closer to my own age got out of the car, and started for the church. 

I closed my eyes.

"Do you need to use the ladies room?" Kayla asked sweetly, startling me out of my thoughts. She stood, waiting for a response. Then, she offered me her arm.

And I was speechless.

Kayla was seventeen, and had grown into a stunningly beautiful young woman. Her hair was still long, but she wore it pulled back simply. Now, she dressed like a modern, conservative teenager, wearing capri pants and fancy bright colored tops. In recent years, she had discovered jewelry, and wore earrings, bracelets and necklaces. She loved to coordinate pink and brown, and was attracted to anything sparkly.

She was patient and steady, dealing with my balance issues and lack of coordination. She was quiet when I needed to concentrate. She steadied me when I needed it.

Kayla walked with me all the way in, and all the way out, like it was the most natural thing ever. She treated me with more wisdom and sensitivity than people twice her age.

I didn't know that what she heard five years earlier would continue to resonate so strongly within her. But it had. The moment Kayla was told that I was perfect just as I was, she stopped thinking of me as someone who needed healing, and started thinking of me as someone.

It wasn't just that Andrew, Ryan and Kayla helped me, it's how they helped me that made an impact. They each respected me and honored me enough as a human being to not ignore a simple need. All three of them treated me not only with kindness and compassion but also with a natural sense of ease and matter-of-factness that I craved.

I find it a little bit ironic that it's the people in the most vulnerable positions in life, the ones who struggle for the simplest things - moving, breathing - who act first when there is a need. It's the young, the innocent, with faith still like a child - who have made the most difference in my life.

And I so deeply appreciate their love.