Category Archives: Celiac

Be Prepared

My wife looked at me yesterday and said, “you need to write again”. Granted, I have been busy and I have not put out a post in a few weeks so I agreed and told her that I would get around to it. It was when she asked me again tonight, this time with more of a sarcastic tone, if I ever planned on doing another blog post that I knew that I better get on it. It wasn’t as if I was suffering from writer’s block or experiencing a lack of topics to talk about. Time just has not been on my side. So, with my wife’s sage wisdom as motivation, I decided to carve out a couple of minutes, sit down and write about one of my favorite topics; my son and another way that he conquered the gluten-free obstacles put in front of him.

Literally, and figuratively, I’m no Boy Scout. For some reason or another, I never became a part of the Scouts program growing up. In all honesty, I don’t remember many of my peers growing up being in the Scouts. Maybe there wasn’t a strong interest where I lived, maybe I was just young and didn’t pay attention. It wasn’t because of lack of Scouting experience in my family. My dad was a scout. Following in his grandfather’s footsteps, Cam spent three years as a scout; two as a Webelo and one as a boy scout. It was a great experience for him. Gaining firsthand experience about camping, having a group to be part of, setting a plan to achieve badges and accomplishment; all traits that have helped him since his Scouting days. Another takeaway that has proven useful to Cam since that time is the Scout motto: Be Prepared. Even with my lack of scouting experience, I am one who firmly believes in preparation and due diligence. To me, it makes everything easier. It makes me feel as if I have a jump on a situation, a step ahead of things if you will, and gives me the confidence needed to achieve whatever I put my mind to. Being prepared for a challenge is the best way to face one, a fact that Cam recently found out on his school trip to DC.

Yes, the trip that we had been planning and gearing our attention towards for months had finally arrived. It was a four day trip with his 8th grade to Washington, eight hours each way on a bus, rooming with three other students, and no parents allowed. The trip was well chaperoned, with everyone from the principal to the orchestra teacher being there to watch the kids but as a parent of a pre-pubescent teenager, you still had a tinge of worry. For my wife and I (and for Cam I suppose), our worries were also focused elsewhere. You see, the food itineraries were already set. Three evenings, the kids would be eating somewhere in a mall food court. The fourth evening, the group was headed to a buffet style restaurant. All scream “red alert” when it comes to providing a gluten-free, safe option for Cam to eat. He was going to be away from us for 96 hours, had we prepared him enough for the challenge? Any failure in doing so would result in a “gluten” episode away from home or, worse yet, on a bus bathroom with 1/5 of the entire 8th grade class within close proximity. Talk about social-suicide. We were concerned.

Cam’s principal was nothing short of awesome in the weeks leading up to the trip. We had location itineraries as to where they would be going. He sat down with us, as a family, and eased our concerns. Cam would be allowed to bring his own food in cases where he could not find a suitable option. The principal arranged for his room to have a refrigerator in it so Cam could keep his drinks and his gluten-free lunchmeat cold. He even offered to arrange for a chaperone to go with Cam to safe restaurants on evenings where the food court lacked a safe choice. Again, he went above and beyond to help ease our worries. But, until more restaurants and service locations are regulated, we still had our concerns.

Aside from the arrangements with the principal, we mapped out restaurant choices in proximity of the malls and where he would be during his long days of touring monuments, museums, etc. We may have taken it over the top when we agreed to buy him an iPhone, just so he could have access to apps such as Find Me Gluten Free and phone numbers for restaurants (I still think he suckered us there), but it helped bring a certain level of calm to his mother and I. After days (months) of planning, we all felt pretty good. He had his cooler, his bag of food, his itinerary and where he was going to eat depending on this schedule. He was set and ready to go at it on his own. Despite it all, we still had our concerns.

Those concerns grew when, despite having a new phone, Cam decided that conversations with his parents was not high on his priority list. Yes, I managed to get a “doing fine” text and after some prodding, I did convince him to call home late one night. I know, at some point you have to let him grow up and be on his own, but this being the first time that he has had to be responsible for all of his meals, I had my worries. In looking back, should I have been as worried as I was? Of course not. I should have relied on my faith that we had prepared, as a family, for not only this week but for choices that Cam will have to make throughout his life. And that Friday morning, as Cam devoured his homemade breakfast of two eggs and four sausages, he told us of his adventures. He talked about everything that he got to see (a visit to FBI headquarters being a highlight) and the fun he had with this roommates. We didn’t talk too much about his food but from what he did say, combined with what I have since heard from his principal, Cam was the ambassador of his gluten-free lifestyle. Their group changed itineraries one day and decided to eat at a food truck (not safe) but Cam was prepared, pulling a “just-in-case” sandwich that he had made and packed that morning instead of buying something he was unsure of. Instead of eating buffet style before an eight hour bus ride home, he picked from his packed “safe” foods to avoid an embarrassing “episode” on the bus. His principal says that he was in complete control, telling others when they were and when they were not needed, and teaching them, as a staff, how they can better prepare and provide for future kids making this trip with special diets.

And as he talked between bites of breakfast, it was then that I realized that my boy has grown up. We all say “they are growing up so fast” when we talk about our kids, but sitting right there in front of me was the living proof of that statement. He was teaching others, adults and kids. His roommates respected the snacks that they brought to the room because of what he had told them. He faced the obstacles of eating outside of the safe environment of his home for an entire week, without mom or dad as a crutch, and handled it with a maturity beyond his thirteen years. It’s bittersweet. He’s becoming an independent young man who will be off to college in five short years. Not here for me to get up in the morning, not here for us to watch sports together, not here for me to hug every day. I know that day is coming. As his dad, no matter how much planning I do, I’m not sure that it’s something that I will ever be prepared for.

 

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Familiar Faces

Over the past month, with the start of school for both of our kids, we’ve been busy with curriculum nights, school meetings, and several other types of community events. It seems like during this first month of school, we have had something going almost every night of the week. This can be both a good thing and a bad thing. Let’s get the bad out of the way first, since it’s quite obvious. Having something every night of the week is very taxing. Juggling who takes who where, determining what we’re having for dinner let alone when we have the time to sit down and eat it, etc. can lead to one looking at the calendar and saying “Where did that month go?”. And we only have 2 kids! How did the Brady’s do it?!?

But we manage to find a way to make things work which leads to the good part of having such a busy schedule. Attending all of these activities, especially those related to the beginning of the school year, allows us to reconnect with people that we may not have seen for three to four months, if not longer. This is especially the case when we go to activities related to Cam’s school. These are parents there that, in some cases, we have now known for nine years. We’ve watched their kids grow up right alongside Cam and even if we’re not the closest of friends with them, they are familiar faces in the crowd. They are people that I would trust if my son (or my daughter with her friend’s parents) needed to interact with them. Like most people, I’m more comfortable in a situation when I am surrounded by things familiar to me. It’s that internal fear of the unknown that, when removed, allows us to relax and be ourselves. Seeing these faces, smiling at us when we enter a room, brings me a sense of comfort. I’ve never been one to shy away from meeting and speaking with a stranger but, admittedly, it’s that much easier when you know the person.

There lies the challenge when you are part of the Twitterverse. You communicate with others but are you truly ever comfortable? We are blessed to have so many followers of our Celiac Teen Dad blog on both Twitter and through WordPress. We are part of a worldwide community that is helping to raise awareness for celiac kids and the gluten-free lifestyle. It shows how small the world has become through  the introduction of new technologies when some of the people that we speak with and consider our good acquaintances are people that we have not even met face to face. But, thanks to a few special ladies in the gluten-free community, some of these barriers have been removed. The event was a gluten-free fair in our region and these voices of 140 characters or less became familiar faces to me.  When I met Pam (I’m a Celiac), Jen (GGF Gourmet), Cindy (Vegetarian Mamma) and Lauren (EpiFamily) in person, it was as if I was attending a family reunion. They welcomed me with open arms (literally) to the event and as a part of their community. They took down any uncertainty that I had built up and put a sense of comfort and confidence in its place. More importantly, they asked about Cam. They wanted to know how he was doing and if he was going to be coming to the event that we were all attending. Unfortunately, he was not and in hindsight, I wished that he had been there. For these wonderful ladies are a part of his community now, too. They are the advocates that understand what he is going through and people that I would trust for him to ask any questions of if needed. They, along with so many others that I have been lucky enough to meet within the gluten-free circles, are the new familiar faces for us in this journey. And that brings me nothing but comfort.

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.