Category Archives: Parenting, Food

Gluten-free, Celiac’s, teenage

A Reason to Celebrate

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One year ago, through tears of pain, Cam asked me to “make it stop”. One year ago, we were introduced to a challenge that will affect our family for the rest of our lives. One year ago, Cam was confirmed a Celiac. Not many families will celebrate an anniversary of the discovery of a “disease”. But we don’t see what we have been challenged with to be anything but an opportunity. One year ago, we were given the chance to help our son; to allow him to feel better and to provide him some freedoms that had been lost to him. And from what we have discovered over the course of this past year, we consider ourselves lucky.

Did you know that 83% of the people who have celiac disease don’t know that they even have it? Did you know that this number jumps to 95% when the demographic is children? Think about that. Only 5% of children who suffer from celiac are properly diagnosed. With over 300 symptoms, ranging from intestinal issues to brain fog to even partial blindness, celiac patients are often given the wrong answer to their question of why they feel the way that they do. We are lucky.

But in hindsight, looking back over the past 12 months, we have been lucky in so many other ways. Every day, I remind my son of how blessed we are to have my wife be his “personal” chef. She has embraced the challenge presented to her, changed everything that she had traditionally learned and has made herself a tremendous maker of gluten-free meals. In our house, everyone has the same dinner. There is no separating what is being served based on someone’s likes or another’s dietary concerns. The pressure to produce is on her every meal and she knocks it out of the park every time. I didn’t fully appreciate how special she truly is until we were participating in a gluten-free Twitter chat last week.  During the course of the chat, she remarked how she could feel the difference in the gluten-free flours and doughs that she uses in comparison with wheat flour dough. Yep, she feels the difference between the two with her hands. Not only did she win the admiration of the chat participants, she further solidified my belief that she is my son’s greatest asset. We are lucky.

Speaking of chat participants, that is another area where we have been lucky. Through this blog, participation on social media channels such as Twitter and in experiencing random acts of kindness, we have met and become part of a caring and thoughtful gluten-free community. The support that we receive from people, some that we have never even met in person, has been tremendous. These relationships have not only showed Cam that he’s not alone in this journey but it has led to memories for him such as his life-changing week at summer camp and the awe-inspiring experience we had at the Final Four. Even my life has changed as there have been doors opened for me, professionally, to become a bigger part of this community and to continue to advocate on his behalf. We are lucky.

But aside from all of this wonderful support, in both our personal and our professional lives, my wife and I realize that where we are the most lucky is with Cam himself. Time and time again, he has proven to us that he can handle a situation such as the one he has been given. He knows that these are the cards that he has been dealt in his life and, with this in mind, he focuses on the solutions rather than dwell on his problems. He knows that he is his biggest advocate and we could not have asked for a better kid.  We are lucky.

So, on this one year anniversary of his diagnosis, I am not celebrating his “disease”. I am celebrating him. I love you, B.

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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.

So Far, So Great

It’s amazing how fast a week goes. Remember when you were a kid and the weeks leading up to your birthday or to Christmas or a vacation seemed to drag on forever. Now, as we accumulate years of memories, the days and weeks make up such a small part of the time that they seem to go by in the blink of an eye.  This week was a perfect example. Just six days ago, my wife, Cam and I made a trek down to North Carolina to drop Cam off at Camp Kanata. After months of waiting (I’m guessing that for Cam it seemed like an eternity), his chance to go to the gluten-free summer camp just north of Raleigh was finally here. And now, six nights later, we are back to pick him up in the morning. Just like that, the week has passed. As a parent, you hope that your kid missed you as much as you did them but, deep down, you know that they didn’t and that makes you even more happy. For you want them to have so much fun meeting new people and doing activities that you want to be (as hard as it is to say) an afterthought. From the looks of the pictures posted daily on the camper’s page to the nightly update, I’ll be surprised if he’s happy to see us tomorrow, being that it will be the sign that his week is done. If his entire week made him as comfortable being at camp as the drop off process made us, as parents, feel confident that his celiac needs were taken care of, he may even hide in an effort to stay another week.

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To be honest, the drop off day didn’t start so well. The culprit…Mother Nature. The morning consisted of off and on showers and even a rumble of thunder. We watched the radar as lines of heavy rain all pointed towards and moved in the direction of the campgrounds. We knew he would get dirty but we didn’t expect the muddiness to start before we even had him settled in to his cabin. You are asked to get to the campgrounds early to complete any forgotten forms and to avoid a “rush” during the check-in process. When we arrived, the first sign that the week was going to be great for him appeared. The rain stopped. It was as if the camp was under an invisible dome. We were able to get out of the car, walk around and explore where he would be living for the week (the picture above was taken during that time; note the sunshine and dry ground).  An intermittent shower did come and go but it was nothing like the deluge we had experienced earlier in the day. And from what I understand, the whole week was ideal weather; some of the most comfortable weather you can get in North Carolina during the last week of July. Upper 70s and low 80s, low humidity and cool nights. Cam gets hot easy so someone was smiling down on him.

When check-in time came, we headed down to the dining hall to pick up his camp shirt and to get his cabin number. He was in Cabin 13 (yes, Friday the 13th and Camp Crystal Lake references came to mind). Also located in the dining hall was the gluten-free table. The Gluten Intolerance Group was sponsoring this week of camp and a representative from the organization was there to introduce herself to us and, especially, to Cam. She told us that she would be at the camp all week and she would be preparing the gluten-free meals for the almost 30 campers there that week that required different food needs than the rest of the campers. She was going to be Cam’s “point of contact” for anything food-related; from meals, to snacks, to the packed lunch for his all day canoe trip. Her being there lifted a burden off of my wife’s and my shoulders. She understood what was needed for Cam to avoid being “glutened”. Someone was going to be looking out for him.

But, being “glutened” was still a concern for us. This is a camp. If you haven’t been to one lately, the restroom situation is not one to be confused with that of a fancy resort. If any cross-contamination did take place, Cam having to go through the pain that he does, in a camp restroom facility, did not bring me happy thoughts. Again though, our fears and uncertainties were pushed away. While Cam was setting up his bunk, putting his stuff away and meeting some of his cabin-mates, my wife and I quietly pulled the cabin counselor aside to familiarize him with our son’s disease. To our great relief, he already knew of Cam’s condition. The cabin counselor let us know that two of the counselors on grounds that week also suffered from celiac disease and came back to help out, based on their previous positive experiences. He indicated that they would be discussing that first day, as a cabin, the significance of the gluten-free week. He wasn’t going to make Cam an example but he was going to raise immediate awareness. He also let us know that if Cam did experience any issues during the week, there was a “lodge” restroom that was air-conditioned and more “comfortable” than the regular bath house where he would take him. He added that if anything did happen, he’d stay there with Cam as he went through what he does… so Cam wouldn’t be alone. Another “words can not begin to describe” moment for us in this journey.

It was kindness like this, that we discovered everywhere that we went on those campgrounds, that stuck with me and kept replaying in my head during that long, late car ride home. I had just dropped my boy off at his first week-long camp experience, in another state, with no one that he knew. He was on his own, but after that first day, I knew that he really wasn’t and that he was in good hands.