Camp No Limits – A personal experience

We have arrived for Camp No Limits Missouri 2013. Our memories of this year are just getting started… Like this tiny moment when Jordan grabbed onto her friend’s float with her little arm as they walked together. I’m in awe by the number of families we have met at camp this year who we know through the Born Just Right community. It’s SO exciting to meet them in person and have a chance to spend time together. I look forward to taking time telling the stories of this year’s camp soon.

In the meantime, I’d like to share an experience from this year’s Camp No Limits Arizona. Born Just Right mom, Rosey, wrote about her experience and wanted to reshare it with you. The biggest and littlest moments mean the most during Camp No Limits. It’s pretty special when you have the chance to sit back and watch it happen. This camp makes those moments possible and it’s why I’m committed to raising money so every family has a chance to attend if they want to.

I have a donation box to the right of this article or you can visit this link to our Firstgiving page. Your donations for 2013 helped raise enough to send eight people to camp. Let’s keep the funds coming in for next year’s camp!

As you consider donating, enjoy Rosey’s Camp No Limits experience:

Glassblowing is a sweaty, dirty art that takes many years of apprenticeship to become skilled at. The terminology sounds a bit rough, too. “Jack it down,” or “glory hole” are among the treasures you’d hear bandied about in a garage studio. Language is inadequate to describe the beautiful movements, and choreography that happens when dancing with liquid danger at a range from about 1600 to 2400 degrees Fahrenheit.

One wrong move by anyone, and disaster can strike. Aside from the whirs and hums of equipment generating enough heat to keep a pot of molten glass orange-yellow hot, the pssst of glass and iron tools quenching off their heat, the slam of a kiln door just before the heat penetrates the last layer in your elbow-length Kevlar gloves (OUCH!), a poorly timed attempt at something and the resulting smash, the smells of sweaty people and off gassing of supplies, a glass studio may be one of the quietest and most beautiful places you could ever hope to be.

Glass is mesmerizing in and of itself, though. It’s something we take for granted, that we don’t think of until we hear the sound of it breaking. Then, we are generally frozen for a moment, and then afraid or mad as hell when our instincts are triggered. A window, a windshield, a drinking glass, medical laboratory studies and experiments, glass is an integral part of our existence. It keeps us safe from high speeds, predators, weather. Lets us see how dinner is progressing in the oven. Yet no one knows how it came to be, or why.

Just as no one truly knows how Rumi’s little arm, or her “lucky fin,” came to be. There are medical guesses, and I’ve heard a few. Although the cause may not matter as what’s done is done, I’d still like to know. I navigate the world with information. It helps me frame questions, provides key search words, empowers me when I am belittled or otherwise disrespected even if just by circumstance.

It helps me kick ass. Overcome. Solve problems. Achieve.

I found other “lucky fin” moms who supported me during my pregnancy by telling me their birthing and childrearing experiences. I later found other expectant moms, in turn, while they were pregnant, and helped empower them. Would you believe that the mother of a lucky fin friend (who is just a few months old now, baby not mom) birthed the baby, and had the nurse tell her the doctor was out Googling the baby’s hand differences, because he’d never before seen it? Roll your eyes along with me, and rhetorically ask what century we live in, but realize that a congenital upper limb difference truly is just that rare.

I initially thought Rumi was too little to take to Camp No Limits just days after her second birthday. She wasn’t in need of learning occupational tasks such as tying her shoes or fastening buttons. I had no place to leave her sister, and it just seemed foolish to travel alone them for days. However, as the time came upon us, I changed my mind. I wasn’t sure how I’d manage the camp costs, as I’d just paid off the majority of a Gruesome Twosome breathing emergency. Complete with ambulance and everything. I just had to have faith, which is not something that someone so hungry for data, facts, and language with which to frame the world is on familiar terms with. I was shaky, and out of my element. Heck though, parenthood does that anyway!

We went, in the cold, sunny Arizona snow. Abnormal Arizona snow. In the deserts. I grew more excited as we approached Camp No Limits for its first Arizona session. I only knew the names of a couple of families who were going, and one little friend, James. I wanted to meet people. I needed to see children like Rumi after so much anecdotal information, and making major medical decisions from it. Mostly, I wanted the reassurance that the pediatric orthopedist we’d had the displeasure of obtaining consolation from was indeed the jackass I still think he is. Not for my ego, though. I’ll admit I like to be right. Anyone who knows me knows that. I need to be right, in some instances, in order to control my universe. In this case, I needed to know that Rumi had far more options than I’d been led to believe she had. Than I’d been able to find on my own keyboard and screen.

I needed to know that I had not done irreparable harm by basing my decisions on crap information by other equally controlling parents and physicians. So I approached Camp No Limits abuzz with excitement and nerves. Feeling I had little to offer in terms of experience, as my child was so young. Not knowing what I could expect, being new to the “lucky fin world.” Worried that I might take too much, without having anything to give back. I’m just like that. Afraid to say the awkward things, having experienced much of it online through research and chat forums. Questioning the wisdom of taking a two year old somewhere for four days, while hoping to balance her toddler needs with soaking up as much of our experience as possible. Wondering what the hell I’d been thinking when I changed my mind and decided to attend Camp No Limits. With a baby. In the snow. To a campground I had attended some 30 years before as a teenager.

We got to know other Arizona families. That Camp No Limits session was the first for most of us. The volunteers ranged from 14 year old Keegan to several young men who are Paralympians. One young woman, Clara, hadn’t been on her prosthetic legs for long. When the campers were busy, the young men helped her learn new skills, such as trekking over uneven terrain on her “legs.” One little girl, Fernanda, had lost her kidneys and her legs to a staph infection. Her parents were obviously stressed, and tired. Fernanda was demandingly dependent. Her Daddy’s donated kidney kept her alive, and free from dialysis. Over the four days of Camp No Limits, I enjoyed support groups, meals, and various activities with other campers. I watched as Fernanda gained some independence, and her parents blossomed with relaxation.  

The “information” some of us parents came with was indeed, as far from the practical truth as it could be: I was right! That jackass ortho who told me not to bother with prosthetics as most kids “fail,” and his advice to surgically remove Rumi’s “worthless” nubbins was more of the same, it turns out. Keegan’s mom, Missy, and the camp director, Mary, assured me: “We hear that from a LOT of parents. But any good prosthetist will work around them as much as possible.” 

I tried on a “dummy” body powered prosthetic hook (made for those of us with all limbs to see what it’s like). Then I picked up tidbits of paper from the floor! I shared my Mommy guilt with other Mommies. Some shared their husband’s Daddy guilt. We discussed how we are teaching our children to define themselves in terms of disability. Which public events we choose, or not, to participate in. I watched as amputees with various types of “helper hardware” demonstrated the ins and outs of operating them, of avoiding chafing injuries, the pros and cons of individual types.  

I listened to some hard truths of others’ lives, talking about how they acquired their amputations. My reality was rocked as I watched a quadruple amputee man named Mike told of his 3 month “nap” after acquiring a hospital infection. How he woke up without his arms and legs thanks to a staph infection, and had to discover ways to regain his independence.  His wife helps a lot by ordering him to cook dinner at least once per week. No infection can touch a sense of humor though! Mike proved that time and time again. Golly when another guy went down, crashing into chairs, we all froze, stunned. Mike just laughed, and made jokes about how we’d be seeing a whole LOT of that in the days to come!

I swallowed back the bile that arises from hearing just how cruel people can be to little kids. I shared my own story of the day my loud reply to some mean old bag’s unkind inquiry as to Rumi’s difference disrupted (stopped) a business. I noticed how none of the kids seemed to be body conscious of their differences, even if they had a bit of stranger shyness about them. Our friend Jimmy really seemed to take to me. Hugs and kisses, lots of flirty little winks, oh yes indeed! I gobbled them up while I could.

There was one family from England who were a bit odd in their relation to me. The mom approached me outside one morning, to chat. It turns out that her son, a little superstar of sorts, attracted a stalker. Who had looked just like me. “Only thin, without children,” she said. Which begs the question of their confusion to begin with, but apparently she committed some crimes during her stalking, including gaining nighttime entrance into the family’s hotel room. I truly felt badly for upsetting the little guy with my appearance. He dodged me as much as he could, and I respected him for it.

There are two specific experiences I wish to write about.

The last night of camp held the usual fun activities: skits, awards, and dancing. The lodge was a huge building set into a hillside. The outer stairs were thusly tall, with different sections. Rumi and I ran into two of our friends in the dining area as we made our way to the ground level. The girls were excited, all prettied up in their dresses, not wearing coats in their nod to fashion. The windchill was in the 20s. It had been a long day, and now the evening program was set to begin, so I tried to hurry the girls along to the stairs. Rumi growled that she wanted to be put down. After lots of whining to be carried, she wanted to go down all the stairs herself. During the daytime, she’d practiced climbing up a few stairs. 

For her birthday, the week before, we’d rented shared cabins up in the pines, and the girls had discovered the joys of climbing up and down short, carpeted steps. Now, though, it really was too cold and dark. Rumi insisted this was the time she’d conquer the stairs, so down she went, to try it on her own. With her short little legs, and her two assistants, there was quite a crowd of girls waiting for Rumi to step down, across, then down, across, etc each stairstep. She refused to crawl down them like Halo did. Standing up, on her feet, like a big girl, those stairs were hers to leave in the dust.

While it was adorable, I really just wanted to get it over with so the girls wouldn’t get too cold. Then, a dad came through the dining room door to find us out there in the first third of the whole project. He is a big, tall, firefighter of a man. He is direct, and pretty funny too. His wife and kids were downstairs waiting for him, as evidenced by the two steaming Styrofoam cups of coffee in his hands. Out of respect for a chair and a warm beverage, I tried to get the girls to move out of his way.

“Eh, no worries,” he said. He smiled, and just watched this whole procession. He was higher up the stairs than I was, so he appeared even taller. Sipping his coffee, he relaxed as we worked our way slowly down the stairs. Step down, cross, step down. As those drinks got cold, as his family waited on him. As the tweenaged girls doted on, and supported Rumi’s effort to master a skill. In those perfect few minutes, I saw a magnificent world of possibility. And now, I must swallow the lump in my throat, and wipe the tears from my eyes as I confess to have reached the limitations of what language can do for me here as far as conveying anything further about that moment. 

Earlier that day, we’d had rock wall climbing and ziplining activities. Rumi and I awoke in the middle of the night slightly under the weather, so we took a nap while the others enjoyed lunch. We caught up with the group, well into their activities. I was interested in ziplining, as I’d never done it. I did it, and although I scrambled my big butt up the pole, looking down was a different story. A 30 foot jump seems so short of a distance, until it’s your own self looking down at the ground.

Mike attempted to go up that pole, but he had technical difficulties (“My leg’s coming off!”). He returned to terra firma, and he must have been devising a plan. That man refused to give up! He found some limits, but a short while later, with the help of two of the dads, and the safety belayer, he squashed those limits. They began to work together as if by magic, or some choreographed thing they all knew the parts to. Perhaps a flash mob. Up he went! Back and forth across the ground went the men, following the rope, hoisting Mike when he asked, releasing him down a bit when he needed to find his “footing.”  Mike would hook himself to the pole, standing upon a heavy, wire step, shouting orders below. The only thing I could do was kneel on the ground, trying to hold my Flip camera as steady as possible in the heavy wind, and capture that moment forever. Somehow, I’d been stunned into a rare silence as I watched that man climp up a pole, and jump!  

Since when do men who wear prosthetic legs jump off poles? Since when is Caryn Walsh silent? Since we have such a wonderful resource in Camp No Limits. Listen, if you know me, you know I have (fill in your own adjectives here) stories. Stories are what I do, what I give, what I collect. My stories are the kind that aren’t made up, however. So let me add here about another guy we met. Josh was born differently, as well. He happens to be a congenital quadruple amputee, but that’s not the interesting thing about him. The interesting thing about him is that as an independent, driven adult, he holds the Paralympian world record in long jump. I’ve been working on writing this piece for some time, during which he’s broken his own records at least twice. The other interesting thing about him is that he attends Camp No Limits sessions to school parents in raising kids like ours, and inspire the kids we raise.

All right, I’d best focus in here. The other thing I wanted to tell you about is Fernanda. Out there on the basketball courts, as we cheered on the ones who climbed and the others who jumped, other things were happening too. Fernanda came to Camp No Limits refusing to wear her “stubbies.” Stubbies are more of that “helper hardware.” They attach to residual legs (I hate the term “stump”), with a hard rubber pad on the bottom. They’re used for getting around in casual settings. Stubbies don’t add any height, they just serve as a sort of shoe. You still have to have skills to use them, though.

As I sat out there with Rumi and her bunny blanket, I noticed that Fernanda’s parents were by the rock wall watching the climbing. Fernanda was being tended to by Clara. Clara, with her bright smile, was patiently leading her little camper back and forth along the basketball court, both wearing stubbies. What was that? Holding hands, they’d move together until Fernanda would fall down. Clara would just tell her to get back up, and wait until she did. There was no scene, no cheering, no tough love, it was just happening. Now and again, Fernanda’s well rested, relaxed, carefree (compared to how they looked when they arrived, at least) parents would occasionally look over to see where she was. Nothing more. That in and of itself was a triumph. Keegan came to assist, Liam and David and Rumi too. Fernanda fell off the edge, unable to make that short step down. No limits, off they all went again when she was ready. No hurry, but no giving up, either.

I watched this, knowing I was watching a miracle. Perhaps not a newsworthy miracle of any variety, but a miracle nonetheless. Fernanda’s miracle was independence. Healing from the unimaginable hell of drug resistant infection. Paz y luz (peace and light) returning to her family, perhaps for just a brief respite. I watched the chilly wind blow her long, brown hair as she focused her young face toward the ground, learning to coordinate her stubbies with her thoughts to go places. Places without limits, however far away they might be, however difficult they may be to achieve. I was, once again, mostly speechless as I observed this activity. I had nothing to offer, yet everything to gain.

I noticed another thing that afternoon. I saw Fernanda’s detested walker, and Clara’s prosthetic legs abandoned. They sat along the sidelines together, ignored. Once again, I am short on words as emotion overtakes me. Shooting the image of that helper hardware was a great moment for me. It’s my favorite Camp No Limits photograph. It’s not perfectly framed or focused. It’s merely symbolic of the perfection of children, and adults and therapists and parents with every level of physicality you can imagine helping each other trod all over limits of any and every variety. Helping each other determine what “no limits” means to them, without judgment or even a timetable. Or even gravity!

So, what’s with the glass talk? Once upon a time, I found beads, then glass beadmaking. I didn’t know how to become an artist, but I worked at it. It was so hard to try to become self-taught, but I didn’t think I was smart enough to attend expensive classes until I had a basic foundation. Once I traveled abroad and got real help, handling melted glass was second nature to my munitions factory trained hands. My jewelry started getting pretty good, and I became a teacher. I walked into a glass blowing studio and within hours, other people thought I’d been there for years. They said, “We trust you with our legs!” Not just anyone can show up and swing molten glass on the end of a 6 foot rod with great results.

The stories were what always made my work better than it technically ever was. Then I had a long period of challenges that got the best of me, and I gave up. My creativity was turned elsewhere, but I had no enthusiasm for anything with danger, or holes in it. My glass torch recently found itself burning again after many years. I didn’t have much to offer at camp, but I was able to make beads, then jewelry, to donate for fundraising. I didn’t raise much money, but there were some happy children who gave their happier moms treasured mementos.

Inspired by camp, redefining my limitations has been my recent goal. Trying to work with that I have, in terms of focus, time, skills, weather, I’ve been able to enjoy the solitude of late night glass melting again! Finding my creativity and exercising it has also been strongly encouraged by the rest of my family. They didn’t understand my enthusiasm for glass, and travel, and whatever mischief, or country, I meandered into. They sure missed it once it was gone, though. With hundreds of pounds of glass rods, and two little fashion curious daughters it all becomes very clear. I’ve been making the beads, some jewelry, and an artist’s webpage. Challenging my limits once again, with older eyes and fingers. I have faith that whether I am creating a vast inheritance, or I can sell enough to get us there, we’re going back to Camp No Limits in three weeks. This time it’s in California, where we’ll see old friends, meet new ones, and spend a few days watching miracles unfold.

Click here if you’d like to contribute to Rumi’s fundraiser to attend the California camp.