Sometimes celiac disease makes me cry.
The other day, when we went out for lunch for Chloe’s birthday, I saw Samuel come face to face to a world that isn’t gluten free. In our home he’s sheltered, our home is always gluten free friendly, and Samuel lives with those who understand the importance of gluten free and making his life normal. And then, then at that lunch, Samuel saw a world of gluten. It made him cry, and put his head on the bench, and get a bit mad.He saw the tiramisu that came to our table and didn’t want to wait for his gluten free chocolate cake. He saw food that he could never ever touch.
That was a down day.
It’s hard to see him deal with the reality of not eating gluten. I know it could be worse, I know it, but it still isn’t fair. And that is what I tell him, it’s not fair, Samuel, and I’m sorry.
And it’s simply not fair. If I could take it away from him would. I would take it so quick – the lab draws, the the compromised immune system, the not playing with playdough, the tiredness, the never eating wheat or barley or oats or rye, the whole thing. I’d take it without even thinking.
But, I cannot. And that hurts my heart.
So I fight for him. I fight for restaurants to provide gluten free options. I fight for awareness of Celiac Disease and push for quicker diagnosis. I fight to find and create normal. I fight for grocery stores to stock great food. I fight to explain Celiac Disease so it’s no longer a mystery. And I fight for his heart.
His heart. So important.
It’s so quick to look at an issue and to just dismiss the feelings attached. With Celiac Disease sometimes I find myself saying it’s just gluten and trying to shrug off how complicated it truly is to live with that limitation. And then, then I’ll sit in the hospital sharing our story and I’ll have a nurse tell me how much she respects parents with kids that have to deal with such life changing conditions.
I forget the life part.
And those are the downs.
But, I don’t sit there, I just don’t. I look at that sweet little face and how much he teaches me. Even after grumbling about not getting dessert he quickly became grateful for the good. I think about his health and how he’s thrived in the last two years since he was diagnosed. And that is what I remember. It will be two years very soon since I heard the doctor on the phone tell me that due to the lab panels it looks like it is Celiac Disease and that we need to do a biopsy immediately. I remember staring out the window on that dreary January day with tears running down my face – tears of sadness mixed with tears of relief for finally getting a diagnosis. You see, with knowing that it is Celiac Disease I also learned what to fight and what to do to bring life and health back to my boy.
Celiac Disease may have its downs but my son has taught me the ups.
He’s taught me to embrace today and to love the moments and to be grateful for all he can have. He’s taught me how to fight and not give up. He’s taught me to say thank you and be positive even when things are challenging. He’s taught me about finding joy in the little things. He’s taught me to embrace the good. He’s taught me that it’s okay to laugh and to cry and to sometimes do a bit of both. He’s taught me about the importance of speaking up and teaching.
Today is an up day. Like most days – and those days really help me through the down days. In fact, most days area just normal, and I don’t think of the limitations of Celiac Disease and instead I simply remember how amazing it is to have a boy that is healthy and running around my home.
Samuel is healthy. He’s wandering around carrying his stacks of books and smiling.
And for that, I am always grateful. Always.
What questions do you have about Celiac Disease? I am a very proud community leader on the Udi’s Gluten Free Boards. This forum is set up to encourage those that are living gluten free or those who are curious about learning gluten free. I write and share a great deal about my experience in raising a child with celiac disease. You’ll find fabulous recipes, great links to encouraging sites, and fabulous support. I’d love to have you connect with me over there as well.
Here’s the link -> Udi’s Gluten Free Community.
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