In which I reveal my dark and ugly heart

I haven’t blogged nearly as much as I thought I would after making this site.  Part of it is because blogging takes time and Instagram does not.  Part of it is that I don’t realize I’m creating a blog-worthy recipe until I’m halfway through it.  The biggest part is that I haven’t really been sure what to say.  I’m still not sure what to say, but I have to start somewhere.  

I cry a lot.  I used to be rather stoic and could count on one hand the number of times I cried in a year.  Now that MIGHT get me though a week.  When I hear about other families going through a rough time, tears come.  When I have to tell our son “no” to a treat, tears come.  When I find wheat hidden in another product that I would never have considered before, swear words usually come first, and then the tears come.  I’ve already cried three times today, and I’m on the verge again as I write this.  Some days I think I’ve got this celiac thing under control.  I can cook whatever we want; we don’t need no stinking gluten!  Then other days like today, I start crying in the middle of Target when my four year old asks, “Mommy, can we please get regular Goldfish today?” 

I was thinking to myself today that no four year old should know the phrase, “Do you have any gluten free options?”  Mine does.  It’s not fair.  I want to stomp my feet on the ground, flail my arms, and scream at the top of my lungs, “IT’S NOT FAIR!!!!”  I am angry.  I see overweight people at the store filling up their baskets with delicious gluten-filled goodness, and I am angry that we ate relatively healthy before the diagnosis yet can’t eat that stuff anymore.  I am angry that I can’t make my favorite treats any longer, and while I’m getting better at GF baking, there’s this ache in my heart that feels like a bruise you can’t stop poking.  I am angry that our boy can’t eat his beloved Chick Fil A nuggets anymore.  I am angry that he’s at a higher risk for other diseases because of celiac.  I am angry that his disease is marginalized because of the freaking gluten free trend and that restaurants with gluten free menus usually aren’t celiac safe (not truly gluten free … Read the fine print on the menus if you doubt this).  I am angry that more than one person has treated this as a preference and not a real medical condition.

I am angry at myself.  I gave my son blonde hair, blue eyes, and the celiac gene.  Without my genes, he might never have had to deal with this.  It’s my fault he has celiac.

And for the first time today, I realized that I have been angry at God for the last three months.  Why MY boy?  He is the last person in the world that deserves this.  Why not me?  I have the gene.  Why couldn’t I be the one to get it first so we could have tried to do something different for him?   How could He let this happen?

This was a shocking place for me to realize I was in because I don’t ever remember feeling this angry before, certainly not at God.  But recognizing where I am is the first step to moving on. In my head, I know that none of my anger is remotely logical.  Now my heart just has to catch up to the rest.  

God has never changed for a second throughout any of our journey.  It is I who have changed.  Now I want that change to be for good.  I sent my husband this text today as I was sobbing in the Target parking lot: “He was made like this before the foundation of the world. He is just as God wants him.”  I don’t need to know the why behind it.  The why is not important.  What is important are these things:

I am not writing this to excuse my feelings.  I’m writing this in the hope that one day one other person may see this and benefit from it.  I initially felt so alone in my thoughts and feelings until I found other parents online who have already walked the road we are walking.  Some are years into the process, and some are only weeks ahead of us.  Now I know a few who are weeks behind us.  

May we bear one another’s burdens.  May I help out others who are struggling whether it be with celiac or another diagnosis.  May you realize today that you are not alone.  


One thought on “In which I reveal my dark and ugly heart

  1. I found your blog through Instagram and and just stumbled on this post this morning. I found myself nodding “yes” throughout your whole article. Our daughter was diagnosed with Celiac at 20 months. Upon the recommendation of her GI, our whole family was tested and I was diagnosed in November. She, like your son, is now thriving, so I am forever grateful for her early diagnosis. I am the one that is bitter and sad and angry, although that passes more with each day. Thank you for sharing your honest thoughts and letting me know that I’m not alone.


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