This time a year ago was when we got the call that we'd suspected was coming...Audrey's endoscopy results confirmed that she has Celiac Disease. (To read the long version of the diagnosis, click here.) A year into this, I wanted to write out some thoughts about how the past 365 days have been for us.
Before I dive in, let me preface this post by stating that I know there are so many worse things out there that people are enduring with their children. Every day my Facebook newsfeed is filled with heartbreaking pictures and pleas for prayers and donations on behalf of kids battling cancer, cystic fibrosis, and other horrific diseases. Even some close friends of ours have to deal with worse food allergies and the fear of anaphylactic shock, which I can only imagine must be constantly terrifying. It is a huge dose of perspective and believe me when I acknowledge that I know how good we have it. That disclaimer aside, though, Celiac Disease is not nothing and I do get to have some feelings about it.
My overwhelming emotion is gratitude. When I reread my post from last year, tears came to my eyes as I realized how far we have come. I remember feeling so depressed and overwhelmed at the enormity of what we were facing. And yet, God has been so faithful to help us through all of the adjustments and heal the damage that had been done to her little body. He even blessed her with a precious friend in her class that is also gluten-free, which has been such a gift in helping her feel she isn't alone.
Truly, the Lord has helped us adjust to everything in a way I doubted was even possible a year ago. Just as other parents in similar situations promised, her being gluten free really has become normal to us. I am so proud of what an AMAZING job Audrey does handling her restrictions. She never whines or complains and is very matter-of-fact about her diet, which is a big help. She's even developed a taste for many gluten-free items that she hated in the beginning, which is honestly both happy and sad to me ("You're right, honey, that cardboard cookie DOES taste delicious!")
Shopping for, cooking, and ordering gluten-free food has become second nature to me. I can read a list of ingredients in record speed and determine whether it's safe for her or not. For those things I'm still unsure about, I have a handy app that scans the barcode and can usually clarify. I've become well-versed in the menus of area restaurants and know how to spot true allergy-friendly places vs. clueless fad followers.
Still, I have to be honest about the slight undercurrent of frustration and worry that has also become second (third?) nature to me. It has gotten so much better, but I don't know that it will ever truly dissipate as long as I'm the primary cook for Audrey...and probably long after, really.
My frustration stems from several things. Dealing with people for whom this is a fad diet and, admittedly undeservingly, sometimes those people that are so ignorant, is definitely at the top of the list of annoyances. I was in their shoes a year ago, so I do try to be empathetic, but sometimes being the educator wears on me. Questions like "So she can't have ANY gluten?" (Nope) or "But isn't that just in bread or pasta?" (No, it's in a ton of stuff including things you would never imagine, like some medicines and sports drinks) do get old. We have to use a different toaster, different condiment jars, and different wooden spoons to avoid cross-contamination. It's checking every party treat bag, holiday goodie, and teacher reward that's offered. Trips take on a new level of preplanning and research. It consumes every thought about every meal and every snack of every day. It permeates our lives. And some people think "gluten-free" just means buying a different kind of bread. And OH my word, the expense! Slapping a gluten-free label on it automatically means you get to cut the amount in half while doubling the price.
The biggest day-to-day struggle, though, is the lack of convenience that comes with a restrictive diet. I confess that sometimes I still get irritated with the extra work. I've had to tell myself that that's okay...that you can still be very accepting and used to something but be frustrated by it (see also: laundry, carpool, taxes, etc...) With the new gluten-free hype, there are many more options available to us than there used to be for people with Celiac. I cannot imagine doing this five or ten years ago! But of course we do not have all of the options that someone without Celiac has. For example, I have to pack Audrey's lunch for school every day. She rarely bought it before, but now it's not a choice at all. Though her school does offer a gluten-free lunch option of the salad bar, like most six year olds, she will not eat that. It doesn't matter if our week is slammed or I'm sick or I just run out of time...I have to pack her lunch or she doesn't eat. And then I double, triple check every day when she gets out of the van at carpool that she grabbed her lunchbox. I've coached her that if she does leave it and I don't notice, she can always eat a piece of fruit or her emergency snack until I can bring something to her. And while we have about six to eight tried and true restaurants to choose from, that's a far cry from the dozens and dozens of options that everyone else gets. Not that we did fast food often, but now I can't ask David to drive-thru anywhere but Chick-fil-A on the way home. Even though I love me some "Christian chicken", I wouldn't mind Wendy's now and then. And of course every meal she eats out runs the risk of her getting "glutened."
The other emotion that has become an old friend in this diagnosis is worry. It's not necessarily constant and it's rarely overwhelming anymore, but it's often nagging in the back of my mind. Will she sense my frustration? Am I somehow silently conveying this burden to her? What if I forget to check a label and make her sick? Is that tummy-ache normal or did she somehow eat some gluten? Does she feel different or left out? (Like that time she came home and the whole class had a treat but the lunch lady couldn't find her special ice cream bars so she didn't get anything. She was completely fine with it, but I was furious.) Will her check-up prove that we've been doing everything the way we should? Can I trust that this parent or teacher truly understands? Will she be sad about the Valentine's/Halloween/birthday goodie bag candy that she can't have? And, the biggest and worst questions: what permanent damage was done and what awful things could this bring about down the road?
So that's an honest look at where we are a year in. We're a thousand times better than we were (and, again, infinitely better than others facing way worse diagnoses) but we're never going to be completely rid of the frustration and worry that came knocking at our door a year ago. It ebbs and flows, but we will never be totally free of it. I pray we'll have some viable options for a cure in the future but that even if we don't, that this will be something God uses to make Audrey more special and amazing than ever.
Thank you for walking this past year with us. For every prayer you said, every recipe you shared, every product you recommended, and every time you made sure she had safe choices at a party or meal, we are truly grateful.
"And we know that God causes all things to work together for good to those that love God, to those that are called according to His purpose." Romans 8:28
Update: I realized after I posted that I probably came off as a total jerk for admitting my frustration with ignorance. I am always happy to educate and answer questions from anyone willing to ask and learn! It's just become such a fad diet that there are a lot of uneducated "experts". It works in our favor with the amount of new choices in stores, but against us when people assume it's a preference and don't disclose ingredients or handle food properly.
