Monthly Archives: August 2014

Not Now

If you couldn’t tell by everyone’s Facebook pages in the past week, school has started for many kids around the country. It seems that posting the first day of school picture has become an obligatory step in being a part of the social media world. And I won’t lie. I do it with my kids and I think that they are fun to look at. From afar, you get to watch your friend’s kids grow up year after year. You find yourself nodding your head as you look at the pictures and you recognize that the smiles on the parents’ faces are a little wider than that of the kids on that first day. But behind that large smile for the cameras, the parents (if they are like me) are wondering where the time is going and saying to themselves, “I can’t believe I have a (fill the blank) grader”. It’s a bitter-sweet day.

We treat the first day of school in our house as a big day. The kids recognize that, much like my full time position and my wife’s employment, school is their “job”. We tell them that we expect them to take school seriously and that they need to put forth their best effort on a daily basis. In order to achieve this, they know that they need to be rested, well-nourished and prepared. So, last week, before the first day of school, we took our kids to one of their favorite restaurants for an “end of summer” dinner. It was our way of celebrating the start of another year and letting them know how proud of them we are. We were going to nourish them and then they would get a good night’s rest before their “big” day.

We went to dinner at our local wing place, a restaurant where we know the servers and have spoken with management about Cam’s dietary needs. He had been there multiple times this summer and never with any negative consequences. It is a restaurant that we consider a “safe” place. Cam got his typical order, traditional wings that do not have breading and are prepared in their own separate fryer. He was six or seven wings into his meal when he suddenly stopped and said “Uh oh”. I looked across the table at him and there was a genuine look of worry on this face. We asked him what was wrong and he reached into his mouth and pulled out what looked to be a crumb. “I think I just ate a piece of breading”, he said, looking at the crumb he held in his fingers. When I asked him if we was sure that it was a breading, he said, “It tasted different than the rest and it had more flavor, like I haven’t had in a while”. It was my turn to say “uh, oh”.

I never want to show panic when I think that Cam has been cross-contaminated. I feel that I need to be the confident figure, someone who he can look at and know that “if Dad thinks it’s ok, I’m going to be ok”. I put up the same front that evening, letting him know that we weren’t sure what it was that he ate but if he pulled most of it out of his mouth, he was going to be just fine. Inside my head, I wasn’t so sure and my own inner-confidence was showing some cracks. Not now, I thought. If he starts having a “bout” in four hours, which is similar to what has happened to him with prior cross-contamination issues, it will start at almost midnight. When finished, his body would be wiped out from both physical and mental exhaustion. That’s no way to go into your first day at a new “job”. Thinking about that first day with new teachers and new schedules can already be stressful enough. I didn’t want him to feel even more pressure in the last few hours of his summer break in thinking of whether or not he would be getting sick later. Not now. So, with a nod of my head, I let him know it would be ok and not something that he needed to worry about. Did he believe me? Maybe. Did the anticipation of possible stomach issues stay in his head until he went to sleep? Probably. But did we let it consume the rest of our evening. No. And that’s a mind-set that we have adopted as a family. We will not let this disease consume any of us in what we do. We have and we will continue to adapt. It’s how we “win”.

It turned out that Cam did not have any issues that evening. He had a good night’s rest, woke up replenished and smiled for the obligatory picture. My smile was bigger than his in our picture, but not for the reasons that usually are associated with a first day. I felt relief. Our “no panic” response to what happened the night before paid off this time. We succeeded by not allowing the situation to dictate our actions. It’s something that I want to make sure never happens; not now, not ever.

 

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Hello Faddah…Stories from Camp Kanata

After a couple of weeks of reflection and allowing him to get back into his regular daily routine, I did an interview with Cam about his Camp Kanata experience. Here is what he had to say.

Q. So, you’ve had a week back from camp. Are you tired anymore?

A. I was exhausted the first few days after camp but I’m not that tired anymore.

Q. How was it?

A. It was really fun. There was a lot of stuff to do and I made a lot of new friends.

Q. Give me an example of what you did every day.

A. We did chapel every morning and then we got to go to our activities. You could pick three activities that you wanted to do. I did dodgeball, canoeing and archery. In the afternoon, we got general swim time.

Q. What was your favorite activity that you did?

A. My favorite was canoeing. At the end of the week we had a long canoe trip that went 11 miles. I had never gone canoeing before so it was a new experience for me and really fun.

Q. Talk about your sleeping arrangements?

A. We had a cabin that was filled with kids all my age. We had to get up at 7:00 in the morning every day and went to bed around 10:00 every night.

Q. Did you hang out with the guys in your cabin or did you go your separate ways during the day?

A. Yes, we had our own cabin table in the dining hall and we did all of our activities together. We became very close.

Q. Were you the only one with celiac disease?

A. Yes, in my cabin. One of the guys in my cabin was at camp with his younger brother and his younger brother is also a celiac. There were about 30 gluten-free kids at the camp.

Q. So you had your own table in the dining hall. Tell me how food was handled.

A. You passed around all of the food, which I didn’t have any problems with doing but I did get nervous when some of the other boys passed food over my plate. I was worried about any crumbs falling into my food.

Q. Did they all pass around your gluten-free food?

A. No, I went to a separate table to pick up my food for every meal. They had it all set up where you could just go back this table and the staff asked what you wanted. It was cool because you could get as much of whatever you felt like eating.

Q. Was it different from the regular menu?

A. It was pretty much the same food as the regular menu but with substitutions like a gluten-free bun. One day we all had hot dogs. The other guys in my cabin had their food brought to the table. I had to go back to the other table to get mine.

 Q. What about drinks?

A. Everyone got water or juice. The gluten-free kids had to bring their own water bottles since in the dining hall, they set the food trays on top of the drinks because the tables were crowded. We brought bottles so nothing would fall in our drinks.

Q. What was your favorite food?

A. Anything at breakfast. The sausage with toast was really good. Oh, and one night they made gluten-free funnel cakes. I had not had a funnel cake since I was diagnosed and it was really good. The other kids only had a regular-type of cake so that cool that we got these.

Q. Were you ever worried about “getting glutened” when you were at camp?

A. Yes, like the first few days I was a little worried but then I figured out that it was all safe and that they had prepared for this and I was going to be fine. Even if I did get “glutented” I felt like I had a good support base with my cabin and my cabin leaders. They also had a couple of celiac counselors that helped run the gluten-free food in our cabin unit.

Q. Any advice that you would give to a kid that was thinking about going to a gluten-free camp like this but still unsure if they would be safe or not?

A. I would say that you wouldn’t need to worry as the camp takes really good care of you. They prepare food separately, know about cross-contamination and the meals are really good. After a few days, I got used to going to another table and didn’t worry about what I was eating. It was nice to not have to think about my food as much.

 Q. So would you go back?

A. Yes, I was really sad when I left. I wanted to stay an extra week. I hope that I am able to back next year.

 

As a dad, I want to personally thank everyone that helped to make this week for Cameron as memorable as it was. The staff at Camp Kanata treated all of us wonderfully and made this not just a week away from home, but a life experience that he will cherish forever.

Unexpected

I can usually get a good read on my kids. I mean, I am their Dad and I’m around them quite a bit. I’ve been blessed to get to spend some ‘extra’ time with them the past couple of years during a few rounds of job-seeking so I think I can label myself a qualified expert in terms of interpreting their thoughts. I think most parents fall into this “expert” category when it comes to their children. You know when they’re not telling you the truth (mine both have a certain expression that they use during the act of fibbing). You know when something it bothering them, even if they don’t tell you and put up the front of everything being ok. It’s an expertise that comes with raising them and having them under your roof 24/7. So, when we picked Cam up from camp this past weekend, I thought that I had a good idea as to what his reaction to being there was going to be. What he shared with us shattered my parental assumption. (Yes, this is another camp story. I know, they have dominated the CTD blog here the past few weeks but it was the big thing in Cam’s life and it had a gluten-free relation so it’s been a popular topic. And, yes, there is going to be one more “interview” type of blog with Cam answering questions about his experience so you’ve been warned).

Mother Nature joined us for pick up much as she did for our drop off a week earlier. It wasn’t raining too much, just enough to be annoying. The camp had invited all of the parents, siblings, etc. who were there to pick up the campers, to join them in one last Chapel get-together down by the lake. They let us in at 9:00 and directed us to the amphitheater where this would take place. To get there, we had to walk past the dining hall where all the campers were finishing up breakfast and their morning routine. And, wow, was it loud in there. You could hear chants, cheers, singing, etc. as if you were right in the dining hall with them. After about 15 minutes, the campers came down to the amphitheater where the parents were all seated and waiting. As they settled in, each camper found their loved ones and gave them hugs. Cam found us and said “hi” (he even hugged his sister). I had a chance to ask him how his week was and he gave me a quick nod, a smile and said “good”. That was the reaction I expected. He’s never been one to share his emotions too much or to ramble on about something that has happened. He’s much more an observer than one to speak his mind (much like his mother and nothing like his old man). He then left to join his cabin at their assigned Chapel spot. Chapel consisted of prayers and songs and even a skit to share a life lesson. The agenda was cut short due to the rain picking up a bit more but at the end, all the campers linked arms, swayed back and forth, and sang a song about “until my friends are together again”. The singing was subdued, completely the opposite from the ruckus at breakfast. Some of the kids were emotional but Cam’s cabin (the 13-year old boys) looked as if they were having a competition of who could squeeze each other’s arms the hardest. Again, the expected reaction from him.

But then it changed. As they were dismissed, the campers stood up and were released to go and get their belongings. It was then that Cam turned and hugged one of his cabin mates. This was repeated three or four more times with other members of Cabin 13. I was taken aback. Now, I have no problem with hugging. I hug my friends all of the time. With my male friends, it’s more of a handshake that falls into a hug. It’s a natural thing for me but it’s always been hard to get my son to hug me in public and, like I said, he’s under my roof almost 24/7. Here, with kids he only met a week ago, he was openly sharing his feelings. These unexpected events continued as we got closer to our time to leave. As we were picking up his things from in front of his cabin, I reminded him to thank his main counselor. He went up to the counselor (the same one that told me that he would be with Cam should any gluten-attack occur) to say his good-bye. Again, to my surprise, Cam reached out and hugged him. The counselor said something to him, which I did not try to interpret or listen to because it wasn’t a conversation for me to hear. After this brief interaction, I could see the tears in the counselor’s eyes and though he tried to keep them diverted from me, Cam’s eyes had tears in them as well. Again, I was stunned.

As we pulled out the camp driveway and started on our journey down the road, Cam told us about his week. All of his stories involved the boys in his cabin. It sounded as if every activity that he did had at least one of the other members of Cabin 13 there with him. I casually slipped in a question about his emotional goodbye to his friends and counselor and he opened up even more. He said that on both Thursday and Friday nights, during their nightly Devotion, they did activities where everyone in the cabin was overwhelmed with emotion. During those evening meetings, it was shared by some of the boys who had been to camp before, that this was the best cabin group that they had ever had. The realization that their time together was rapidly approaching an end was too much for all of them and Cam said that all ten of them were in tears. He had found that group of guys and created a bond that we had hoped he would find during his time away. We didn’t realize how strong that bond would be and how hard it would be for him to leave it behind. It wasn’t long after this story that Cam went to sleep, his exhausted body finally winning the battle.

As I watched my son in the rear view mirror catch up on his sleep, I tried to put myself into his shoes. During his school years, he has always been on the fringe of various friend circles. He gets along with the “popular” kids but he’s not on the ‘A’ list for hanging-out or parties. He got along with the members of his baseball team but they were not people that he hung out with outside of game activities. He’s “known” but his quiet demeanor has left him as an “unknown”. This week, all of the conceptions and barriers that have been made by his peer groups at home, were no longer there. This week, his gluten-free lifestyle was celebrated and not seen as different. This week, he was part of the core group; not a fringe acquaintance. And now, this week was done. Later that night, I could tell that lack of sleep and his emotions were still weighing on him. As we talked, he told me that he wanted to go back. I asked if he meant now or next year. He replied, “Both”. My heart hurt for him.

These days the world is a small place, but not small enough sometimes. Most of these boys live more than eight hours from us, not just a bike ride away. They all have already communicated through social media, sharing camp cheers via Instagram just 12 hours after leaving each other, but sadly I know that this will probably fade away as school starts and they each get back to their day to day routines. But who knows? Maybe the pact and bond that they shared at camp will overcome the odds. For Cam’s sake, I hope I’ll be surprised again.