I stopped blogging in January after I got a nasty email from someone about my blog. 95% of the emails and private messages I’ve received have been positive, but this one stomped my heart. It was a personal attack on me for my opinions and feelings about our celiac journey. All I have left to say at this point is that until you have walked this path for your own child, you can’t possibly imagine the wild ride of emotions that I have experienced. It’s one thing to make a decision about your own personal health; it’s another thing entirely to watch your child go through this … To watch him screaming in terror as he wakes up from anesthesia, to hold him down repeatedly for blood draws that you know are going to traumatize him as he pleads with you for no more owies …
To try to explain to a four year old that he will never outgrow this.
We stopped at Kroger today, part of our weekly ritual on my out of office day. As usual, we picked up fruits and veggies for the next few days, and I paused to look at the ingredient list for a new product at the edge of the produce section. Kidlet wandered into the bakery section and loudly exclaimed, “Mom!!! They have SCONES!!!”
I drew a breath and steeled myself against the sadness that threatened to creep up. “Well, baby, those are actually cinnamon rolls, but you can’t have those. They’ll make your tummy hurt.”
“Oh, do they have gluten?”
“Yes, baby, they do.”
“Well, can I have that cupcake? Does that have gluten?”
“No, baby, you can’t have that. It does have gluten. Everything on this table and in this bakery has gluten. You can’t eat any of it.”
I was taking another breath to tell him that he COULD eat something I made him at home when he peeked up through his glasses with his big blue eyes and stated, “Okay, when I am a grownup, I can eat this.”
I knelt down so that we would be eye to eye. “No, buddy, you can NEVER eat this. Look me in the eye — you cannot eat this now or when you’re a grownup.”
As I hugged him tight, I asked him if he wanted to go home and make something together. We selected cookies. They’re cooling now, awaiting frosting and sprinkles to rival the cookies we used to munch in our old life.
Our gluten free life really isn’t bad. We’ve been eating in for almost every meal which has allowed me to use my new Instant Pot for so many fun experiments, and my enthusiastic four year old sous chef makes trying new recipes exciting. We are getting there, one day at a time, and I’ll never stop trying to make this life as easy and as tasty as I can for him.
In the interim, I wait. Our upcoming lab draw weighs heavy on me, and I get nauseated whenever I think about it. His doctor wants to see his numbers coming down even lower, and I am scared again by the “what ifs.” What if it’s not decreasing? What if my best efforts aren’t enough for him? What if I have to take away his rare eating out treats? What if …? So I try my best and wait and pray.
I’ll do anything at all for my tiny love … Anything.