A Day in the Life of Rob

April 6, 2021

3:00AM

“My eyes pop open. I can’t say I’ve been deeply asleep because I haven’t let myself do that. I’ve told my mind to stay alert, and just like the phenomenon of telling your brain to wake up 10 minutes before your alarm, it actually listens. I hear my camper call my name so I jump out of bed. He asks to be turned over. It’s typical that someone will wake up and need something during the night. A quick couple of turns and shifting in bed and my camper is situated for the rest of the night.

At this point it’s my turn to take watch. Among the counselors in my cabin, we decided to split the night into shifts to make sure someone is always awake in case campers need something in the middle of the night. It’s Day 2 of camp and the bond between everyone in the cabin has grown. My shift is with Josh, a personable teenage counselor who despite being an outgoing jokester has a lot of depth. I feel like I know him pretty well for someone I’ve only met 36 hours before. We’ve yet to share childhood experiences or deep feelings about anything, but knowing the guys in my cabin is how I imagine firefighters and military soldiers build camaraderie among themselves. We are a collection of individuals pulled together looking for a positive life experience. We are a unit.

We have some hours before sunrise and my mind instantly goes into prank-mode. In the cover of the night, I tape a blue tarp over the door of the camp directors’ cabin. Later I find out that these pranks are tiddlywinks. These folks are clever and well-versed in pranking. I am out of my league.”

8:00AM

“The cabin starts to move with life. Counselors start tending to campers’ needs. My campers are normal teenagers and most awake in a ‘I don’t want to go to school’ mood. The cabin has banter like a gym locker room. Mild grumbles and inventive crudeness are thrown around simply to get laughs from one another. The process of preparing the group takes about one hour. Most of the campers in my cabin can support their heads and move their hands or fingers, but many are unable to move their arms or legs, so they need assistance getting ready for the day. It takes time to learn our campers’ routines, but I’m learning and Day 2 is quicker than Day 1. Slowly but surely I’m perfecting the little things, like putting a long sleeved shirt on someone.”

9:00AM

“The trek down to breakfast is filled with light conversation—my camper and I are finding similarities between ourselves. Music, news, websites and books, whatever stirs a thought or story to pass back and forth. This campsite has steep hills, but these seem to terrify me more than my camper. It gives me the understanding that any tool can be like a third hand, that my camper could ride a tightrope with his incredible chair control skills.

Entering the mess hall for breakfast has an open air of light heartedness. There, some are more groggy than others, and just like any group of people, it will surprise you who grumbles ‘I can’t think before coffee’.

The most significant part of the first meal was learning what it’s like to feed someone else. Good communication is always necessary when supporting a camper, but getting comfortable with it requires picking up on little cues from my camper. How often and how much each forkful of pancake should have comes with time; this is the fine tuning between me and my camper. Meal times allow me to reflect upon how often I focus on my carnal needs. Outside of camp, my meals are mine and when I’m hungry, I eat and wait for no one. But, at camp I’m responsible for feeding my camper and myself, all at the same time.”

10:00AM

“My mind is taking in the good conversation and the spectacular beauty of the landscape. As a first-year counselor there really isn’t much to worry about. The activities are organized during the week and we’re free to come and go to them as we please. After breakfast, we can try out anything we want: archery, a boat trip, meals, arts and crafts, etc. That’s how we approached Day 1.

Of course everyone wants to dabble and take part in everything. All the campers want to take home great memories, and their ideas and suggestions are received openly and with enthusiasm, no matter how old the camper or counselor.”

The Afternoon

“The joy is all around, mostly because everyone is here for the same purpose, to have fun. Announcements are transformed into sideshows and everyone takes part, even the cooks. It all feels like an improv theater stage for anyone to express themselves. When the whole group is together it’s free and open and welcoming. Camp is full of good people, so being brave and stepping up to entertain is welcomed and encouraged.

The camp experience is personal to you and your camper and each camper-counselor pair is different. Throughout the day there will be a range of available activities and the picking and choosing can be decided. There are challenging parts, like taking bathroom breaks and showering, but at Camp Promise you’re amongst instant friends and family. These family members understand you’re doing something with good intention, and there are no judgments that make for uncomfortable situations. Helping another person shower is no big deal once you get over yourself. In fact by the end of the first day, I was so in a mode of helping and learning whatever I could, that I’d jump into situations that normally would make me squeamish.”

Evening

“By the end of the day I am tired. But it’s the kind of tired you get from having a great day and building memories. Delirious, but happy. The week ends with a dance and that makes me feel like a kid again, but this time all the middle school anxiety or self-consciousness is removed. I am more free than being my kid-self and that’s a lasting sensation. Every time I look at photos from camp I feel that again and I can’t wait to get back.”

Experience the magic this summer!

How is the rare disease community accomplishing goals?

Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!

Your gift helps Jett Foundation provide programming and opportunities, such as Camp Promise, to many families impacted by Duchenne muscular dystrophy each year.

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