CAM with Cam

We’re fast approaching a big month in the circles of my world. Growing up, May was always the family birthday month. My dad, grandma, uncle, cousins…you name it, they had /have a birthday in May. It also marked the time when school was winding down, baseball was starting up, and we were spending more time outside as the days continued to get longer. As the years have passed, not much has changed. In fact, May has even become more fun-filled as my interests have developed and life has “happened”. In my neck of the woods, flowers are in bloom, lawnmowers are humming again, and you get to see your neighbors after seven months of hibernation. There’s the annual running of the Kentucky Derby, always a big boxing match around Cinco de Mayo, and both of my kids start their seasons (baseball and softball, respectively). On top of all that, I’ll give you three guesses as to what month Cam was born (and the first two guesses don’t count). It’s busy. It’s fun. It’s May.

In the past couple of years, May has taken on a new significance in our family. May is Celiac Awareness Month (abbreviated CAM…coincidence, I think not!). It seems as if every month is some kind of disease awareness and that someone is always wearing a ribbon (green is the color for this particular cause) but obviously, this one has taken a special meaning for us. As one of the 1 in 133 that has celiac disease, Cam has been doing great. He just had a follow up appointment and his antibody levels are now insignificant. He has put on a good four inches and 15-20 pounds since going gluten-free and his instances of “getting glutened” are few and far between (but it still happens). Despite these changes, he still can’t eat at school, restaurants (outside of our staples) are still a challenge, and there’s always a glimmer of doubt in his eyes when someone puts a plate in front of him. It is for these reasons, that we have the green ribbon in May and we do what we can to help raise awareness.

So, during my travels for work, I got to thinking “what can I do to help with raising awareness for his cause”? Obviously, this blog and sharing our story with friends, families, and others in the community is helpful. But what makes that different from every other month? How can I show him (and others with celiac disease) that I understand the challenges that they face? It is with this thinking in mind that I decided to go gluten-free in May. Now, I do not show any signs of celiac or gluten-sensitivity personally, though I can still be a carrier and it could present itself to me later in life. Part of my awareness efforts in May is having a blood test done and checking my own levels.

As I was going over the logistics of taking this on for 31 days, I got excited. I wondered if I would “feel better” throughout the process. I wonder how my body would react; if I would drop any weight or be even more energetic. Dinners would be no change at home. We have full gluten-free meals as a family as to not isolate Cam under his own roof, so 1/3 of my meals were already accounted for. This was going to be a piece of cake (gluten-free, of course). And then, the thoughts of those May activities came to mind. The thought of hot dogs at the ball game. Drinking beers while watching the Cinco de Mayo boxing matches with my friends. The birthday cakes to celebrate all those birthdays. I began to doubt myself.

It was with this indecision in mind that I realized how selfish and weak I really am. This was a choice for me, something that I could change my mind about at any time. For Cam and for millions like him, that choice is non-existent. His body is forcing him into making decisions that I was wavering about taking on for only four weeks. For me, it was going to be a month. For him, it’s for life. I was embarrassed. And with this shame, came a desire to do what I can for him and all in the gluten-free community. So I will proudly let food places know I’m gluten-free. I will blog my progress, spreading the word as much as I can. If you’re buying me a drink, make it hard cider please. And when the time comes to commemorate one of the best days of my life, I’ll be sitting right next to my 14 year old, smiling as we share that piece of gluten-free cake together.

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How We Celebrate: The Pros and Cons of a Celiac Thanksgiving

Today is a great day. It’s a day to spend with family and friends. It’s a day to sit back in your favorite easy chair and watch some football. Most importantly, it’s a day for us to count all of our blessings. Thanksgiving is the official start of the holiday season (don’t tell that to the retail stores) but it is also one of the only days that we center our lives around food. Yes, we have Memorial Day picnics and Fourth of July cookouts but Thanksgiving is different. It’s all about the turkey, the stuffing, the pumpkin pie. It’s a day to gorge ourselves, feel guilty about it, and then shop off our guilt the next day.

Our day will be like many of yours. We are lucky enough to have both of our immediate families living close to us so we will split our day between two locations. We will go to my wife’s parent’s house first and then go to my aunt’s, where I will see my parents. I only plan on eating at one place as I’m getting old and my body doesn’t accept the challenges of multiple Thanksgiving meals that well any more. But when I was Cam’s age, I would eat on Thanksgiving non-stop. Whenever I walked by the table, I would grab a roll, a piece of turkey, whatever I could get my hands on. Cam doesn’t have that luxury, of course. While many things that we traditionally eat for Thanksgiving are “safe” for him, he still needs to be careful. Many of these are hidden dangers so, for a better understanding, I’ve decided to highlight the pros and cons of the Thanksgiving that he faces.

Food: Turkey = gluten-free. Mashed potatoes = gluten-free. Sweet potatoes = gluten-free. Cranberries = gluten-free. Man, I love this holiday! – PRO

Stuffing: Fortunately, Cam wasn’t a huge “stuffing guy” anyway so this one doesn’t affect him as much. What does affect him is if the turkey is stuffed with stuffing. That turkey is thus cross-contaminated and not safe for him to eat. – CON

Pre-planning: Knowing that the turkey will be stuffed, we purchased our own turkey. We cooked it yesterday, carved it this morning, and we’re bringing some of the turkey breast with us for Cam (and whomever else) to enjoy. We’re also bringing our own gluten-free rolls and pumpkin pie, one of his favorites. – PRO

Kitchen item worries: Was the pot that the potatoes were boiled in also used for any type of wheat pasta in the past? Was a fork used to take that piece of “stuffing turkey” also used to grab his “safe turkey”? The chance that he gets contaminated by things such as this are small but, as a parent, you still are worried and no one likes to worry over the holidays. – CON

Our Blessings: He gets to see both sets of his grandparents, possibly one of his great-grandmothers, two aunts, one uncle, multiple great aunts & uncles, cousins. On top of that, our CeliacTeenDad site on Twitter hit our 1,000th follower yesterday. That’s 1,000 people that is living this with him, listening to what we have to say, and becoming aware of the gluten-free lifestyle. We have so many things to be thankful for and there’s not better day than today to remember that – PRO 

Have a wonderful and safe Thanksgiving everyone!

 

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.