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.