Monthly Archives: April 2014

Giving and Receiving

I go through times, as I’m sure many bloggers do, when an idea on what I should write about just doesn’t materialize. More often than not, topics pop into my head at strange times, such as when I’m mowing the grass or at 1:00 in the morning during a bout with insomnia. I’ve started keeping a small notebook close by so when these thoughts do come about, I will record them and have the ideas at the ready for when I sit down again at my computer. Since my goal is to advocate Celiac for the purpose of providing an easier life for my son as he gets older, I often write, ad nauseam, about different foods, restaurants and the threats of cross-contamination. I try to stay away from rehashing these topics over and over even though they are the source of the majority of the issues that Cam faces. If I feel bored writing about it, I’m sure the readers of this blog are pretty tired of hearing about it too. So, I try to focus on other things. Things that stand out, such as a positive gluten free experience for Cam that I think deserves more recognition than I can provide by simply saying “thank you” (thinking of you Tina Griffith).

But this week, in terms of topic ideas, has been relatively quiet. Not much traveling. No celiac-related issues from eating out (for which we are very thankful).  Not many new things that I felt were “share-worthy”. A couple of days ago, when my internal clock was telling me that it was time to write another blog, I was getting desperate. I was ready to open my notebook to see what ideas I had in reserve since my mind was not producing anything at the creative level. It was then that, not one, but two things happened. Experiences that occurred within the span of a couple of hours that were totally unrelated to one another but both an example of our lives in the gluten free community. One was an instance where we were able to provide advice for the safety of a Celiac that we haven’t even met. The other, an instance where something was provided to a Celiac that we dearly love.

Since September, my family has been immersed in the world of gluten-free living. It is a 24/7 mentality that we must follow for Cam’s safety. An indirect effect of this is that we are now seen in our social circles as the Google of anything gluten free or Celiac related. By no means are we close to being experts in doing this (I came close to contaminating my son’s lunch the other day) but I guess it comes with the territory and we would rather share and answer questions than not be asked and risk the consequences. My wife and I were out for our anniversary dinner and afterwards, we found ourselves loitering at a WalMart (because doesn’t everyone do this after 16 years of marriage?). While there, we ran into a friend of the family. She was shopping for party favors for her daughter’s first birthday party that was being held the next day. Through the course of the conversation, she brought up that her daughter’s daycare “teacher” was going to be at the party and that this teacher was also a Celiac. Our friend had been using my blog to help her with the planning of the food that she would be serving at the party. She went over what they were having and mentioned that she had bought new jars of peanut butter and containers of cream cheese to help avoid cross-contamination for their Celiac guest. I casually mentioned that she should make the teacher’s meal first, before possibly contaminating the peanut butter and cream cheese when making the non-gluten free offerings. It was a step that she had not thought of. My wife also took the time during this conversation to provide a quick tutorial on what else our friend should look for on the food labels to assure that the other items were safe. We know what Cam goes through and try to provide helpful advice when we can since we do not wish these symptoms upon anyone else. I’m not sure how the party went (I’m sure it was fabulous) or if the Celiac teacher even had any food but it made my wife and I feel good that we could give our knowledge to provide a better experience for a complete stranger.

This same day, Cam came home from school with a smile on his face. I attributed this to the fact that it was a Friday and he was looking forward to a weekend without school work. As I always do, I asked him how his day went. His typical response to this question is a simple “good” and that’s about all the feedback that I receive. This day was different. When I asked about his day, he proceeded to tell me about what he described as “something really cool”. During his Language Arts class, he discovered that his teacher was having her birthday and she brought in a treat for the class to help her celebrate. Normally, classroom treats are a cause for raising the red flag and Cam having to give a polite “no, thank you”. This teacher, though, gave him a gift for her birthday. The treats that she brought in were individual cake mixes to which you just add water and heat up in the microwave. Before distributing these to the rest of the class, she provided Cam with his own treat; a gluten free mix just for him. Not only did she have the forward thinking to bring this in for him, she also had previously cleaned out the microwave and made sure that he got to go first to avoid any cross-contamination from the other treats. No wonder he thought this was “something really cool”. His teacher provided the environment for him to participate in a school activity that we thought was no longer possible. And the result was one smiling pre-teen.

Looking back, I don’t think that it’s coincidence that these events happened on the same day. Some would call it karma. Others may say it’s an example of what goes around, comes around. I just see it as an example of the community that I am proud to be a part of.  One that cares for each other and puts other’s interests before their own. One that understands that giving is better than receiving. In today’s society, communities such as these are less the norm and becoming few and far between. So, when examples of kindness within our community does come up, kindness that I want my own children to exemplify in every day life,  I find it worthy to write about.

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Encouraging Signs

With the changing of the seasons and the long-awaited warmer weather, our family’s daily activities have shifted and we are back into a fun and familiar Spring pattern. On the weekends, we work in the yard, enjoying the fresh air and striving to recreate the landscape enjoyed by the bare feet seen on many lawn care commercials. The kids are doing their best to stay focused in school, knowing that there is a mere seven weeks left before three months of swimming, ice cream and no homework. In the evenings, softball and baseball practices consume a good portion of the week, giving us a chance to meet new teammates and to reconnect with families who we have grown to become friends with over the course of past seasons. After a practice this past week, we had the opportunity to rekindle another activity experienced every baseball season; meeting up at the post-game hangout. You can tell that this is a beloved activity since we didn’t even wait until the season started to meet for the first time this year. Call it a post-practice get together. It’s a chance to sit down and speak with people who we like but haven’t seen for a few months (outside of mandatory school activities that forced us to venture out into the snow and cold). All of the kids, team players and younger siblings, get to hang out in a non-classroom setting and build a camaraderie that will carry through the next four months. The parents get to sit back, enjoy a beverage of their choice and partake in adult conversation that was limited during the winter. It is a time that is missed during the off-season.

Our team’s hangout of choice is the local Buffalo Wild Wings, affectionately called BWs (B-Dubs). We have had success, as a family, eating at BWs since Cam was diagnosed with Celiac. Our branch has a gluten free menu and they have a dedicated fryer for the traditional, non-breaded wings so we don’t have to worry about cross-contamination. It was one of Cam’s favorite restaurants before he was diagnosed so I think that he likes the fact that he can still go there and eat the same thing that he did when he was on a “normal” diet. More importantly, it is a place outside of our home where he feels “comfortable” eating. Unfortunately, these places are few and far between. On this particular night, our practice ended at 8:00. It was a limited team practice so there was only four or five adults and six players in our party. We figured that given the later time and the small number in our group (usually we have more than double this amount), getting a table wasn’t going to be too difficult. Our assumption did not take into account that the local hockey team’s first playoff game was on and the middle school baseball and softball games ended about the same time as our practice. Our wait was 40 minutes. During this time, Cam hung out with his teammates and our party grew in number thanks to chance meetings with other families and friends who were also there. It seemed as if everyone had the same idea.

Once we were seated (parents at one table, kids at another), the waitress came around and matched up which parent was with which teenager and responsible for the large amounts of food that they would be ordering. I took this time to speak with our server about Cam’s limitations and the need for his wing order to be prepared using the dedicated fryer. From our past visits, we have grown to know several of the staff at this BWs location and most are familiar with his dietary challenges. I had not seen this particular waitress before but she was very understanding of Cam’s needs and said that she would speak with her manager to confirm that they were able to abide by our request. Given our track record of gluten free success with this BWs, I was surprised when the manager came out to my table. She wanted to let me know that due to the demands of the evening crowd, they could not keep a dedicated fryer open and there was a risk of cross-contamination with our order. I called Cam over to the table where he spoke with the manager face to face. From her mannerisms, I could tell that the manager was very apologetic with Cam and understanding of his situation. I did not not hear any more of the conversation but Cam gave me the nod, letting me know that he was fine with whatever was said.

Even though our order could not be fulfilled, I viewed the evening as a success, filled with encouraging signs of change.  My confidence and respect for our local hangout grew immensely that night. Our server listened to my request, was able to process the importance of it and took the actions that she needed to when not understanding if they would be able to fill our order. On a night where her restaurant was packed with consumers, the manager took the time to come to our table and explain the situation. She was open with both myself and, more importantly, with Cam. She didn’t have to tell us that the fryer was cross-contaminated. She could have just viewed me as another customer and ignored my request for the sake of gaining my dollar. By compassionately doing the right thing, she saved Cam a night of pain and discomfort. By acting as she did, she earned my return business and hopefully the business of others in a community seeking gluten free answers.

BWs, though, was not the only source of encouragement for me that evening. I’d be remiss if I didn’t mention how proud I was of my son. When I started this blog and my involvement in the gluten free community, I told Cam that I would stop doing what I do at any time if it made him uncomfortable. Here I am, speaking in an open forum about his health issues and symptoms that many may consider embarrassing. I remind him on a weekly basis that this offer to discontinue my advocacy is always on the table. But on that night, at a loud and overcrowded sports bar no less, I witnessed what I deem to be the next step in this process. Cam has accepted his condition and is starting to become his own advocate. He’ll officially be a teenager in three weeks but his understanding and grasp of his situation shows maturity beyond his years. Here he was, standing and speaking with the manager (a complete stranger to him) and talking about how their food preparation affects his health. If I would have needed to speak with a stranger at the age of 12 about my health and the possible “fall-out” from a poor choice, I would have been mortified. But there he was, keeping eye contact during the entire conversation and advocating his lifestyle. And the surprises for me didn’t stop there. After giving me the aforementioned nod, he went back to sit with his friends. I watched as they fulfilled their curiosity and asked him about his conversation with the manager. As if he was talking about the latest video game or an awesome play on SportsCenter, he told them about it. His mannerisms switched from having a very “adult” conversation to talking nonchalantly about his Celiac with his buddies in the blink of an eye.

As I’m sure all parents do, I still view Cam as the small bundle of joy that we brought home on Mother’s Day thirteen years ago. We bend over backwards to protect our children for we still see them as our babies, helpless and needing our encouragement to learn and strive. When these roles change, and your child becomes a teacher, you can’t help but to feel a strong sense of pride tinged with a touch of melancholy. Gaining his partnership in advocating his cause is paired with losing the feeling that my son is still a helpless baby boy. With this loss, though, comes a feeling of accomplishment and confidence. I know that his condition is not a source of embarrassment or cause of alienation among his peer groups. I have seen that he can responsibly handle a challenging situation and understand the ramifications of his choices. He would tell you that he’s just happy that he can still go to BWs with his buddies but I’m encouraged by his openness and similar desire to make his lifestyle easier in the years to come. It is for his own good and I know now that he realizes that.

 

Frustration

QsThe other night, we were reminded of how little it takes for Celiac to rear its ugly head and how quickly it can make Cam’s life miserable.

Cam had not experienced “being glutened” for almost two months. He had gone about 60 days without an incident and the times when he experienced symptoms on a daily basis seemed to be a distant memory. Spring activities and plans for the summer had taken over our primary thoughts and while we always keep his condition in mind, we felt comfortable in our day to day efforts to keep him safe. As if it had taken offense to our false sense of security, Celiac reminded us that we were in this for the long haul. And it reminded us quickly and harshly.

Cam went the whole day without having any issues. He had his usual breakfast, packed his lunch for school and we made dinner here at home. We had family over to celebrate my daughter’s birthday and throughout the duration of the visit, Cam had no problems. After our company had left, he went up to get his shower and I started to help his sister get ready for bed. I remember walking into our bathroom where he was standing there; looking at his reflection and brushing his hair. Typical evening ritual. It wasn’t two minutes from when I left him that I heard a cry. It was a sound that dropped my stomach for I knew exactly what it meant. I had not heard it in two months but it is indistinguishable. I went back to the bathroom and he was doubled over with stomach cramps. Just like that. Quick and relentless. The next 90 minutes was all too familiar. Pain, tears, stomach trauma, hand-holding and frustration.

Cam, unfortunately, has to go through the worst of these symptoms on this own, but frustration is something that we all experience during these episodes. The internal questions, for us as parents, start the minute that you see his discomfort. What caused this? What did he eat to set this off? What could I have done differently to stop it? As he lay in my bed with a sore stomach and his body shaking while recovering, we all discuss our theories as to why this happened. Cam feels that he had too much dairy (Celiacs often have varying levels of lactose intolerance since the lactase enzyme is depleted when gluten blunts the intestinal villi).  My wife takes it personally whenever an episode happens to Cam. She is blinded by his pain and can’t see that she is doing everything and more to protect him. Since all of his meals this day were prepared at home, she’s taking it a little harder than normal. She questions if she cross-contaminated a utensil that she used when preparing his food. I ask myself about a different type of meat that I bought and grilled for dinner. Was the beef modified? Was the grill clean? I rack my brain thinking of items that I grilled prior evenings to see if I can find a solution. But no answers come. We are left with our questions and the frustrations of not knowing what could have been done differently to assure that Cam doesn’t have to go through this again.

We’re not naive. We know that there will be future episodes. We don’t know how severe they will be or how quickly they will come but we know that they will likely be accompanied by more frustration. So, as parents, we need to keep our heads and not let that frustration get the best of us. We need to ask the questions that we do. We need to keep advocating to assure that what he goes through is understood and give Cam a chance at an easier life as he gets older.  But for right now, we just need to be there for him, holding his hand as long as he needs us to.