how the little boy with celiac disease changed his mother

Sometimes I forget, my friends. I forget.

I look at Samuel – healthy Samuel – wandering around our home. His rather large head with crazy blond hair popping up in the back if it’s cut too short, cute blue eyes, and sweet little voice walking through my kitchen. Healthy. As if nothing happened.

Do you think he really has Celiac Disease?

Those words will leave my mouth. It’s kind of a whisper, a soft whisper laced with just a glimmer of crazy hope. I’ll look at my husband and I’ll ask, I’ll implore of him to answer – to remind me – to tell me the truth that deep down I know but I hope that it’s not.

Yes. I know it.

He answers. No explanation, no details, no hemming and hawing, no wondering, no pondering, no doubting. Just a simple, and definitive, yes.

He remembers.

He remembers the little boy who was sick every couple weeks. He remembers how much pain he had – every single day. Not a day would go by where our Samuel wasn’t curled over in a ball – hurting. Our little Samuel didn’t know a life without that bowel pain – he didn’t know that gluten was hurting him – making him get sick, and have no energy, and not absorb food.

Sigh. I remember as well.

Deep down, I know, even though sometimes I’ll just ask. I know that my little boy, my sweet two year old boy, my lovely and strong and awesome and blessing of a boy, has Celiac Disease. It damaged his immune system. We fight and fight and fight and fight. But, my friends, it hurts my mother’s heart deeply. Sometimes being real means admitting that there are things in this world that just plain hurt.

I can’t fix it.

We want to protect them, right? And yet, there are things I can’t physically change. I can’t take away the Celiac Disease. However, I can fight it. I can write about it, and seek out change, and bend on my knees every night in prayer over it. I can bring awareness and buy gluten free and watch over him. But, friends, I can’t fix it. I know you get that – that’s a hard part about being blessed to be called mom.

It still hurts if I really think about it.

I think about all the things that I have to say no to – all the birthday party cupcakes, cookies, licorice, fried chicken, wheat bread, noodles, lucky charms, my grandmother’s wonderful sweet rolls, cool Star Wars playdough sets at Target, kitkat bars, ice cream cones, and more – so much. Even though there are options it’s still limited. I can’t got the clinic without the doctors asking if it’s just a cold or if it’s celiac disease – his medical chart is forever altered. Those things, those are life things, but I’ve learned these last 18 months that they are not defining things.

I don’t define him as having Celiac Disease. He’s my son. A fighter. A normal, extraordinary, sweet, and very busy two year old.

I love that boy. Love him love him love him. Something fierce.

He’s changed my mother’s heart. His struggle has made me celebrate the joys in the everyday. He’s made me realize just how often I absolutely need to be on my knees – praying – thanking, pleading, rejoicing, and really being grateful for all the good – what he can have and for his health. He’s made me a fighter – I watch him fight – I watch him win and I learn to fight. I watch him rarely complain about what he can’t have and instead brush it off and enjoy what he can. His strength and resolve amazes me. He’s two. And his mother {me} has learned from him.

Samuel, you fighter, I love you forever.

May and October are National Celiac Disease Awareness Months – thank you for fighting with me for awareness.

I am forever changed, dear Samuel, forever. So blessed to be your mom.

And so grateful to fight for you and for awareness.