Little Hero

My youngest has been at camp for a solid week. It was at a YMCA camp, staffed the way they usually do the big summer camps – lots of imported students or fresh Uni grads, who agree to herd masses of rowdy kids through obstacle courses, swim tests and talent shows six days a week for an entire summer, in return for the “time abroad.” Sunday off, that’s it. This was the first week of camp, since school just quit last week, so the counselors were all green and expectant as we dropped kids off last Saturday.

This was the first time he’d be away from friends and family for so long. This particular camp week was for ulcerative colitis and Crohn’s kids, to help them be a bit more self reliant and learn more about it in the safety of nurses and docs, with a group of similar kids. So after I prepped the nurse with all the injections, pills and regular other stuff that the other kids were also dealing with, I jumped in with his other “thing.”

My 9-year-old, besides being an ulcerative colitis patient, also has PKU (phenylketonuria) which means he is restricted from eating protein, and required to drink a special formula to provide amino acid replacement for the whole proteins he can’t ingest. He’s relatively easy for an afternoon playdate or even a sleepover (I send snacks and his formula and keep it really simple), but a whole week away from anyone who had managed him before had me a little nervous. Camp policy said no outside food is allowed. Rats, mice and peanut allergies out in the boonies, and I can see why.

I don’t prep people on PKU protocol very often because the learning curve is steep. I always follow, “Well, can he have…?” with, “he doesn’t eat: meat, fish, eggs, dairy, legumes, nuts, soy, whole grains, pasta, or anything that has lots of wheat flour in it.”

Yes, then they look at me sideways, white-faced, blankly (like you might be now) and ask what he CAN have. “All fruits, most veggies, except the ones I just named.” It’s the dance. We’ve done it for almost ten years. I often forget how much I had to learn before I could condense it down to that short list. But the nurse and I had gone back and forth for several emails and phone calls before camp. She was confident they could feed him and substitute from the kitchen when they ran into a meal item he couldn’t have. It ended up that every main course was something he couldn’t have.

Today I drove back to camp to fetch him after a week. I met with the nurse to see how the week went. She was in the middle of gushing over his effervescent personality when he appeared with one of this cabin counselors in tow. “Mama!!” He wrapped me in a waist-hug, beaming. I asked her how the foods went. She smiled and said he did very well except when they had to correct him a couple times. No bagels, no noodles. She motioned to the counselor who had followed saying that he had taken on my son’s extra food requirements personally. He nodded and stood silently behind my son. His name tag said Umear. I remembered meeting him at drop off. He was soft spoken, from England, with dark, gentle features and heavy glasses. I shook his hand and thanked him, then turned to leave.

“He’s an amazing kid,” he managed to say before pulling off his glasses and wiping his eyes. I was shocked. It’s been a while since I’ve seen a college guy tear up. Then he collected himself and said, “he has given me a greater appreciation for life. He has been so uplifting for me…” then he broke down completely. He’d wiped his face twice already and was presently fighting himself to follow protocol and let us go, or tell me more. I hugged him, told him it meant a lot to me to hear that, and asked him for more. He sobbed openly and wiped his eyes again.

“What he is doing is so hard. I mean, he couldn’t eat anything, but he was still so happy every day….”

“Yeah.” I teared up too.

“That is so hard! I mean, I am fasting right now, so I know how hard it is to watch everyone else have what you can’t have. And he is so good about it!”


“Yeah.” I puzzled for a moment about how a 20-year-old guy could possibly wrangle camp kids all day without food or water during daylight hours, and whether Allah considered his followers above the 45th parallel when he decided Ramadan should ever fall in the month of summer solstice. Then I wondered if the camp was accommodating him by feeding him before 4 am and and after 10 pm. I didn’t ask. We walked together toward the pile of sleeping bags and gear as he continued.  “I had to take pasta away from him one dinnertime because he thought he could have it and then we found out he couldn’t. We saw it on the sheet you sent.” And this is when it occurred to me how much he had undertaken. My apprehension in the weeks before wasn’t in filling out piles of paperwork, sending refrigerated meds, or worrying that my bubbly, gregarious son would make friends. It was this. That someone else would have to take this on and succeed at it.

“You did my job this week. I know how hard that is, and I’ve been doing it for nine years. We’ve had a little practice. But it sounds like you did great!” I thanked him again and asked what he was studying in school.

“General nutrition medicine. But now, after this week, I think I want to work with special diet nutrition instead.” By this time we both had tears running down our faces. We exchanged information. I ask him to write to my son and began listing nutrition and special diet medical contacts, off the tip of my tongue, in case that might be of interest to him. He promised to write. My boy was standing between us, smiling and looking at both of us sideways, wondering what all the fuss was about. He hugged Umear, to which Umear said, “you keep drinking that shake of yours, okay?” then turned to me, “he was a leader all week. He was the front of the pack everywhere we went and helped the other kids all the time. He’s got great energy and enthusiasm… a great kid.” Then he turned to my son again, “you come back next year, okay, and I will try very hard to do the same.” They nodded at each other from across the parking lot.

All the way home I asked about camp, with Harry Potter Number Seven muffling answers and stories. My kid has inspired a college kid to be something special; something more than he would otherwise want to be, if he hadn’t spent a week with my kid. I think I was teary about the whole exchange until we were off the peninsula, over the Tacoma Narrows Bridge, and stuck in Tacoma traffic. And yes, he had a great time at camp.

Skills Rec 3 104-XL