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.