Monthly Archives: February 2014

Life’s Mysteries

I’ll admit it. The thought of writing another entry for this blog has intimidated me these past two days. After my last post, which highlighted what we’ve been trying to do as parents to make sure that Cam doesn’t feel alone in his diagnosis, the outpouring of support has been tremendous. Friends and family shared and commented on our site, reminding us of how much we are truly blessed. Beyond that, the post was noticed and commented on by numerous people that we have never even met. It showed us the power of our words and the amount of compassion that exists but is often overlooked in our day-to-day lives. Some opportunities that have come from a simple, 1,000 word heart-felt message are beyond my gratitude and will be highlighted in future entries on this site (how’s that for a teaser?).  But that didn’t stop the pressure that was starting to build. I want to share our stories but I had no answers as to what I was going to write about when I sat down again at my laptop. My next post remained a mystery. 

As pressing as it was, this case of writer’s block hasn’t been the biggest mystery in our house during the past week. Shortly after my last post, Cam experienced another celiac-related episode. It wasn’t as bad as in the past (they last about 30 minutes now) but it’s definitely not something I want my son to have to go through. Just seeing him doubling over and on the verge of tears with severe stomach cramping is enough to rip out your heartstrings. When his stomach settled and he was able to go back to bed, the questions from both my wife and I began. What had caused this? What did we miss? How do we keep this from happening again? We immediately began a run-down of all of the foods that he had eaten that day. We determined that he did not eat one meal that was prepared outside of our home so that ruled out any restaurant-neglect. For breakfast, he had a gluten-free waffle with butter and some chocolate chips. For lunch, gluten-free chicken tenders prepared in our own personal fryer. For dinner, we had pork tenderloin, mashed potatoes and green beans with a small chocolate brownie sundae for dessert (yes, all components again homemade and gluten-free). So to someone on a gluten-free diet, we did everything right. But, to our Celiac, there was still no answers as to what we missed that resulted in his half hour of discomfort. Our search continued. 

When you are a parent of a child with a food allergy, or with any health condition for that matter, you will rack your brain trying to find out the answers to what is causing your child pain. In my head, I went back to breakfast. Did we use Cam’s toaster that is for GF items only? Was the butter we used from the refrigerator his dedicated stick or the “general” butter? I moved to lunch. Did our oil in the fryer somehow get cross-contaminated? At dinner, he had a glass of milk. Was the blunting of his villi in his small intestine and the subsequent absence of lactase causing a brief period of lactose-intolerance until his body healed? If so, why was he safe drinking a glass of milk at dinner the night before? Going through all of these questions and not knowing if you have found the answer that you seek can be extremely frustrating. 

Honestly, we still haven’t figured out what caused Cam’s latest bout with his Celiac foe but in thinking about it, I was reminded that this blog is, first and foremost, about Cam’s well-being. I want to become an advocate for my son’s disease and I want to continue to educate others to make his life easier moving forward. This blog can be an outlet for continued calls for change and recognition in the food and restaurant industries that will allow him to become more comfortable with his independent choices. It can be a blog for learning something new about Celiac disease every day and having a place to share it with others. It may not be the answer to all of our questions but it is a start towards the ultimate goal of understanding. 

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Someone Like Me

    As a parent, I sometimes get the feeling that Cam isn’t as upset about being a Celiac as he is feeling like he is the only person who is a Celiac. Obviously, he knows that he’s not the only kid out there who has to go through what he does but I think he is having issues with being the only one in his peer group. This is purely hypothetical on my part. He could be just fine with everything and I could be conjuring up visions of a pre-teen, angst-filled, emotional battlefield going on inside his mind. After all, I am a parent and part of my job is to over-analyze his thoughts and actions and bug him about something that could be nothing. We all do that, right? I do see him being the only person in his school (not just his grade or classes but the whole building) who has CD. I do see him watch commercials on TV depicting college students texting each other about going out for nuggets and witness his reactionary disdain for that fast food company. No one else in our immediate or extended family has a confirmed diagnosis of having this genetic-based disease. Shortly after our entrance into this new lifestyle, he had a heart-felt conversation with my wife and I, asking us “why him”. Of course we could give him no answers but we could see that he feels alone.

    No one wants to be alone. We crave companionship and love the thought of coming home to a full house. We all want to be a part of something. As a family, we’re hoping to find some connections at the local GIG (Gluten Intolerance Group) meeting tomorrow night but even then, I think that Cam will still feel a little isolated. And that’s where we, as parents, come in. We need to find ways to keep him involved and to keep him from not becoming a 13-year old, hormone-infused powder keg whenever the time comes to eat a meal. We’ve found solutions to eating at home and deal with what the restaurants have given us to work with. We know there are camps and groups and all kinds of other ways to show him that he’s not on an island. But we also need to challenge ourselves to be more creative. And that’s why yesterday was awesome.

    One of my best friends lives and breathes NASCAR. Yesterday marked his annual “holiday” with the running of the Daytona 500. We had picked up a small NASCAR Lego figure for him and was going to present this, along with a cold beverage, as our gift to him on his big day. Before going to his house, I turned on the pre-race coverage to learn a little bit more about the event so I could engage him in conversation and not come off as too much of an idiot. While I was watching, Cam was on our other couch with his full attention turned towards his iPod. He had no interest at all. When I saw this, I don’t know why I did what I did but I think that my parental instincts, to care and nurture of our children, kicked in. I Google’d “NASCAR Celiac”. I was curious. What better way to connect with a 12 year old boy than through sports. Granted, his favorite sports to watch are basketball and college football but this was still a huge, televised event. The results brought up Parker Kligerman.

    Parker is a 23 year old rookie in the NASCAR Cup Series. He’s from Connecticut, started in the 41st position for the race yesterday and is a Celiac. Parker speaks openly about his gluten-intolerance, answering questions about how difficult it can be finding the right thing to eat while travelling from track to track every week. When I told Cam about Parker, his first response was an excited “Really?”. We read more about him on-line and found the number 30 car on the television so we could keep an eye on him during the race. As some of you know, the race ended up being delayed for six and a half hours but that did not cause Cam’s excitement to wane. When the race resumed, he watched for Parker’s name in the standings at the top of the screen; groaning when he dropped, giving a little fist pump when he moved up. The race was about half over when Cam looked at us and said, “I’m actually enjoying this. I normally don’t like NASCAR but I now have someone to root for.” That someone was like him.

    Now, you may think that this is where the awesome ends with this story but it gets even better. As I’ve mentioned, I have taken to Twitter to become an advocate for the Celiac and Gluten-Free lifestyle. Wanting to share this cool moment with the person who had caused it, I found Parker’s racing team Twitter page and sent the following tweet. What I didn’t expect was what I received in return.

    CeliacTeenDad ‏@CeliacTeenDad  15h

    My son hasn’t watched #NASCAR . Now that he found that @PKracing30 is a fellow #celiac , he has a rooting interest in the #Daytona500 Go PK!

     PK Racing ‏@PKracing30  15@CeliacTeenDad Tell him we send a big THANK YOU for cheering for @pkligerman & the No. 30!

    An almost immediate response. Parker was still racing and his team had taken the time to acknowledge us with a “Thank You”. I showed this tweet to Cam and his eyes lit up. BAM! Parker Kligerman, you and your social media team, nailed it. You are an athlete, you were in a huge event and you sending a personal tweet acknowledging my son made his day. Here was someone that he could cheer for. Here was someone, on a very public level, who could relate to what he is going through. Here was someone that didn’t make him feel so alone anymore. So to Parker Kligerman, someone that I honestly did not know existed when I woke up yesterday morning, I give you a huge thank you in return. Your day may not have ended as you wanted to (Parker was caught up in a seven car crash in the last 10 laps of the race) but you became a winner in our house.

    Support Groups

    Have you ever stopped to think about how many social groups you are a part of? It really is a fascinating thing to do if you have a few minutes of time. As I sat down to think about all of the groups that my family is blessed enough to be a part of, I kept having “Oh, yeah, forgot about that one” moments. Just think about all of the circles of friends you have and you’ll understand how well-connected you actually are. College friends, neighbors, kids’ friends’ parents, church friends; the list doesn’t stop. I’m not going to go through all of the groups that I came up with but the number surprised me.

    When Cam was diagnosed in September, we became a part of several more community groups. Some were forced upon us, others we joined voluntarily. Cam became a part of a small but growing group of people diagnosed with Celiac (currently 1 out every 133 people). It’s not a group that he’s a member of by choice. In contrast, by choice I have become part of a wonderful group of people sharing their Celiac and Gluten Free stories out there in the Twitterverse. Learning of their ordeals and following their stories has reiterated to Cam (and myself) that we are not alone with this new challenge. But we were never alone. During the past week, there have been several enlightening moments that have reminded me that we’ve had the support that we’ve needed since day one.

    It started at a conference that my wife and I asked for with Cam’s teacher team. We’re not concerned about his grades or his behavior at school. After the “Oreo Lab” incident, we wanted to make sure that the teachers were understanding of his situation. (Side note: I know in the past day that there has been quite the stir up with a post that a school mom made about not being able to have birthday cake in the class room. While I disagree with most of her flawed statements (read the Gluten Dude’s response for feelings that are similar to mine), this conference was not about chastising the teacher who used the cookies in the class. Cam is mature enough to know where gluten is and is not. Our meeting was more about how he was personally adjusting in an environment where we were not with him.) The meeting with the teachers was great. They listened, asked questions and had a genuine concern for our son’s comfort levels while under their watch. Signs for support continued later in the week when we went to a surprise birthday party for my godfather. Here, among relatives that we see maybe once or twice a year (and that we haven’t seen since Cam’s diagnosis), caring and considerate questions were asked. The hostess of the party asked if they could provide a GF pizza specifically for him, the one person among the group of 40 or 50 present that would need this. A beautiful and non-selfish offer that was definitely noticed. From friends asking us how they can help accommodate our needs to make Cam “comfortable” when inviting us over for a simple get-together to his orthodontist assistant revealing to us that she and her daughter are both Celiac patients and sharing some of their stories, the number of supporters have been shining points during this past week. These are the signs of compassion that makes what we are doing just a little bit easier.

    And we hope to continue to find support in the days to come. This next week, we will be going to our first meeting of the local Gluten Intolerance Group. The group in our town is affectionately known as the Gluten Free Gang (Cam asked if he could get a GFG tattoo, I shot that idea down quickly). He’s looking forward to meeting other kids who has what he has (he’s the only one in his school with Celiac). My wife and I are looking forward to meeting other families who have experienced this lifestyle change and sharing tips and suggestions with them. We all are looking forward to a positive experience and the chance to add one more group to our list to count on.