Laundry room mocking…

“They broke bread in their homes and ate together with glad and sincere hearts”

During one of my impromptu visits to Hobby Lobby (they happen more than I would like to admit!) I came across a shabby chic wooden wall piece with that quote on it. I fell in love. It goes perfectly with my style. And I knew instantly where I would hang it in my home. You see, my walls are somewhat bare at the moment. We repainted our entire main floor a couple of years ago (yes, YEARS) and I honestly never put it entirely back together. I have slowly been adding pieces here and there. Taking my time, picking out the perfect ones. So when this caught my eye I thought, “Yes! One step closer to filling these blank spaces!” Threw it in the cart without a second though. Slid the credit card. Took that baby home!

But several weeks later it is still not hung. It currently found it’s home in our laundry room amongst the clutter and endless piles of laundry. (You have no idea how much laundry a family of 6 produces. Mass amounts!) It isn’t sitting in there because I am unsure if I still love it as much as I did when I first laid eyes on it in the store. Nope, still in love with it. It isn’t because I don’t know where to hang it. Nope, I had the perfect wall picked out before it was even in my cart. It isn’t because I haven’t had time to hang it. Don’t get me wrong, we are insanely busy people, but my husband can testify that if I want something done I am not the most patient of people.

Nope. None of the above statements are true. This perfect wall piece remains amongst the piles of laundry and clutter because it is a false statement in our home. The quote is a sad reminder of struggles, tears, fights, trials, fails and pain.

“They broke bread in their homes and ate together with glad and sincere hearts”

For those who know the obstacles we have faced, this will be very easy for you to understand. For those unfamiliar with Elliot’s story, I’ll give you the cliff notes version. Elliot has a rare and severe disorder, Food Protien Induced Enterocolitis Syndrome (or FPIES for short). It is also believed that he has a Mast Cell Activation Disorder and/or some other underlying condition (biopsies are currently pending). In a nutshell, Elliot is nearly 11.5 months old and can only consume “safe” breastmilk (and it is only “safe” if I remain on a restricted diet to ensure no allergens pass to him.) He is quite literally allergic to every, single food…and as we found out a few weeks ago, paper, as well. He is allergic to the proteins that make up food…and every food is made up of proteins. His reactions induce severe vomiting, diarrhea, pain and can cause his little body to go into shock very quickly. There is much more involved, but you get the picture.

So for many months now, food has not been my “friend.” Between the diet I am on…which I loath at this point! Over-analyzing everything I eat (Will it hurt him? Is it safe? Any hidden ingredients?) Waiting for reactions to begin. And when they begin, how severe will they be? Being on high alert 24/7 ensuring he doesn’t find the smallest of crumbs left behind.

So no, we no longer, “break bread with glad and sincere hearts.” No, instead, we give our baby an empty spoon, a straw and a mesh feeder bag filled with ice cubes at each meal. That does not constitute as, “eating together.” But we try to keep some sort of consistency and normalcy for him. We do not have “glad and sincere hearts” as we watch him imitate our mouth movements as we are eating, knowing how badly he wants to eat, too. It is a helpless  feeling to watch your baby stare at you while you eat. Unable to feed him. Denying him of a basic human instinct and necessity. We do not have “glad hearts”  when we discuss how badly we wish we could give him just one, small bite of our mashed potatoes or a little taste of ice cream. Mealtime isn’t a celebrated event in our home anymore. It hasn’t been for a long time. Instead, it is a constant reminder that we are struggling.

Oh, and that perfect wall I wanted to hang it on? Ironically enough, it is the same wall that Elliot’s barely used highchair sits on. Cruel joke.

So for now, my beloved wall piece remains mocking me from the depths of hell (aka my laundry room) until further notice. To most, it is just a beautiful quote that may remind them of happy times spent with loved ones or memories that will soon be made. After all, food is the root of most celebrations. But for me, it leaves me longing for the day that my family can break bread and eat together with glad and sincere hearts. Because what a celebration that will be…

***please feel free to like, comment, and SHARE! My mission is to make FPIES a household name. Far too much is unknown about this terrible disorder and spreading awareness is key.