Thursday, September 13, 2018

To My Precious Little Girl: You have Celiac Disease. And Mommy Can't Fix It

“MOMMYYYY!!!” You yelled from your room as I finished up the lunch dishes. I grabbed a towel and hastily dried my still drippy hands as I rushed in to help. 
“What’s wrong baby?”
“My princess fell behind my toy chest!!” You said, distress dripping from your words.
“Don’t worry. I can get her.” Your face lit up. 
“Thanks mommy! You always fix everything.” You throw your arms around me as I hand you the small toy, as though I had just saved your whole world. Tears filled my eyes almost instantly. 
Oh how I wish I could fix everything. Oh how I wish I could take this away from you. 
You see, you have celiac disease. And mommy can’t fix it. 


I've suspected for awhile now that you have celiac disease. It runs in the family and you were showing all the signs. Your little belly is always round and bloated, full of gas the same way that your cousin's was before he was diagnosed. And then there are the dark circles under your eyes. They are always there, even though you sleep 11-12 hours at night and take a good nap each day. And then there's the fact that you haven't grown even a centimeter or gained even an ounce in the last 6 months. I'm sorry that I didn't have the test done earlier. I guess I was scared. But now I'm mostly just relieved to know how to help you. I am almost always super positive about it and I generally feel like it won't be a big deal. There are lots of good gluten free options these days and I am confident that you can lead a normal, happy life. Yes, most days I am fully positive about it. But then there are some days that I just want to hold you and wish I could take it away. 

A few days after the princess incident, we were talking about eating gluten free. You’ve had the best attitude about your disease. You seem to understand it more fully than a three year old should be able to understand. You even march around the house chanting “gluten free, gluten free, gluten free!” You ask if your favorite foods are gluten free and if something is not, you respond “that’s okay! We can find a way to make it gluten free. Or I can eat something else.” Yes, you are pretty incredible. But that day was different. As we talked about your new diet and why you would need it (because you see, this isn’t just an allergy. Your body is producing antibodies to attack the gluten, which mistakenly attack your small intestine instead), your face fell. 
“Mommy,” you asked, “when my tummy is all better, can I eat normal food again?”
“No baby. Celiac doesn’t go away. Eating the gluten free food makes it so that your tummy stays healthy. You will have to eat gluten free for your whole life.”
“Oh." You pause, and then, "Having Celiac is kind of hard.” 
I wrapped you in my arms and just hugged you. I didn't know what to say. I couldn’t fix it. 
It’s the first time that I haven’t been able to fix it. And I won’t be able to fix so many things. 

I won’t be able to fix it when you go to your best friend’s birthday party and you have to eat the special cake that mommy sends you while all your friends eat the pretty cupcakes. And even though yours is still yummy, it will be hard being different. 

I won’t be able to fix it when your teacher gives out treats for rewards and you have to have something different than the rest of your friends. 

I won’t be able to fix it when we go to Disneyland and you can’t have the churro that everyone else seems to be eating. 

I won’t be able to fix it when we go to a church potluck and you can only eat the things that mommy took because we don’t know what’s in the other dishes.

I won’t be able to fix it when your class earns a pizza party and I have to bring you your own special pizza. 

I won’t be able to fix it when a kid at school asks why you can’t eat “normal” food. Or when that one mean kid calls you weird. 

I won’t be able to fix it when you go out to eat and only have one choice on the menu. 

I won’t be able to fix it when you get asked to the prom but have to tell your date that you can’t go to the restaurant he chose because they don’t have any gluten free options. Because being 16 isn’t hard enough already. 

But I will always wrap you in my arms and hold you tight on the days when having celiac is kind of hard. 

I will bake and bake and bake again until I can make the perfect gluten free chocolate chip cookie. 

I will try my hardest to never leave you in a situation where everyone else gets a treat but you don't.

I will search the internet and cookbooks for recipes that are not only gluten free but completely delicious. Because “pretty good for gluten free” isn’t good enough for you. 

I will advocate for more gluten free options in stores and restaurants. Especially kid friendly restaurants. 

And on the days when it’s kind of hard to have celiac, I’ll let you be sad. Because it’s okay to feel sad sometimes. And I’ll be sad right along with you. But then we’ll do our best to make the most of every situation so that those sad days don’t come up all that often. We can do this. You can do this. And even though I can’t fix it this time, I’ll be by your side every step of the way. 
I love you, my brave little girl. 

Love,
Mommy


4 comments:

  1. This is so common now. I noticed gluten free pizza crust and bread for sandwiches at Barro's Pizza the other day at no extra charge, so restaurants are kinder and more thoughtful now. It's hard to have to read every ingredient in so many grocery items. Our 22 yr old granddaughter went off gluten one week and her rashes went away and she hopes after awhile to put a bit of regular bread etc back into her diet. We have a sister missionary here that can't eat anything with tomato in it which I decided is in about half the things we cook. But after the initial shock of being limited in cooking for the missionaries, I found lots of things I could fix and so hopefully maybe things will get better when it becomes "old hat" to you. Let's hope that's her only big challenge in life. Your girls are adorable and you are such good parents. You'll handle this so well.

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  2. I don't know how my daughter in laws name got in there....Karen Ruddell

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  3. My mother-in-law and sister-in-law both have celiac and eat gluten free. They've both been doing it for the last six years and it's hard, but we've all learned to adapt. I check all of the ingredients before I make foods for family gatherings and we always have a good gluten free option for treats when we have birthday cake or something. You've got this!!! It's hard, but you'll learn things and I have no doubt that your daughter will love you for it because she'll recognize how much you love her through what you're doing!

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  4. Oh, Kailei!! I'm so sorry your family has to deal with this! Your daughter is right; it's going to be hard. But, the burden will feel lighter because she has such a wonderful mother like you who is aware of the situations that will be the hardest and you are going to try your best best to make them easier.

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