It has been a beautiful summer. Perhaps not as hot as it could have been, I for one like to stockpile the feeling of the sun on my skin for the cold winter months when I can't remember what it feels like not to have goosebumps, but a pretty summer nonetheless. We've made a bunch of trips to the island, spent plenty of weekends relaxing at home, and have tried to make the most of the summer. I even started a bit of creative writing, which made me surprisingly happy. I won't say that what I was writing was all that great, but I'm fairly confident it didn't suck, and that's something! I was interrupted from my writing by an onslaught of bookkeeping duties and just when those were letting up again I've been consumed with something entirely different: figuring out how to keep my kid healthy.
About a month ago Ben starting having some stomach troubles. It didn't seem severe, he wasn't in a lot of pain, didn't complain that much, but spent an increasingly larger amount of time on the toilet every day. After force feeding him bananas, probiotics and even cutting dairy out of his diet, we went to see the doctor for some help. Last Friday we found out that Ben tested positive for Celiac Disease.
I shouldn't have been surprised, but I was. I still am to be honest. And as I've researched and read about Celiac my surprise has gone from frustration to horror to sadness to determination. I've known, sort of, what celiac is since I was just out of high school. I've actually been tested for it several times, but I don't have it. I knew that it was essentially an allergy to gluten, something that I, a die hard fan of all things bread related, couldn't possibly comprehend having. So when I was told Ben has celiac I was not really sure what we were talking about. Did he actually have celiac, or was it a gluten sensitivity? Was it something he could outgrow? Could he still eat small amounts of gluten or did it have to be eliminated entirely?
Our pediatrician was less than helpful, telling us only to stop feeding him gluten. Fortunately I have good friends and a knowledgeable family who was able to point us in the right direction. We're getting him a referral to a GI doctor to confirm the test results and hopefully help us figure out how to adopt a gluten free lifestyle. I've done some reading and realized that celiac is not the same as a gluten sensitivity. While we all know someone right now that has cut gluten out of their diet, they don't necessarily have celiac disease. Gluten sensitivities also make people feel pretty crappy so cutting gluten out of their diet makes them feel better. Celiac disease, however, is an autoimmune disease. Instead of gluten just making my kid feel crappy, his body actually starts attacking itself causing damage to his intestines. Obviously, damaging your intestines really isn't a good idea, so the gluten has got to go. The more I read, the more I discover just how difficult this is to do. Gluten is in EVERYTHING. And even if it isn't in it, there's a good chance it's been around gluten. And, as I've been reading, the longer you stop eating gluten, the more sensitive you can become to exposure to gluten. Any exposure. It's mind boggling really. Depending on how sensitive he is to gluten, we may have to eventually get all gluten out of the house all together, meaning none of us can eat gluten around Ben.
This is NOT what I expected when I took him to the doctors last week to figure out why his stomach was bothering him. But this is our new reality. I will be packing his lunches now for the rest of his childhood. I will be bringing all his food with us when we travel. When he goes to school he will likely be grouped with the other allergy kids to keep him healthy. When he goes to friends' houses and birthday parties I will be bringing his food. I will be that mom. The one that makes their kid was their hands a zillion times day, feeding him weird things like raw almonds and bread-less sandwiches. The one that makes him eat granola bars instead of cupcakes and macaroni and cheese that tastes like cardboard.
It really sucks, and it's still very overwhelming. I know that things could have been worse, much worse. Celiac disease isn't a death sentence, it isn't something that's going to noticeably affect how he grows and develops. It is going to change him though and it's not something that he'll ever outgrow or stop being aware of. There will probably be times when it makes him really sick. But he will get better and he will learn how to live with it. And so will I. I will embrace being that mom. I will be the best that mom that you've ever seen. Because my kid is awesome and he WILL be healthy.