My 11 year old daughter and I decided to publish our personal letters to one another after discussing their potential benefit to readers.
We made the decision because we value raising awareness, gaining greater knowledge, finding choice in difficult times, having discernment and taking healthy action.
Here’s the gist: This past week, I wrote to her in hopes to better process her diagnosis of celiac disease in January 2013. Since her diagnosis, I’ve experienced many emotions and thoughts of how I could have been a better mother.
These thoughts fed a hungry appetite of parental guilt and shame. All the while, I kept busy orchestrating a mega kitchen/nutrition renovation. Of course, she now eliminates gluten from her diet for life, but because of additional food sensitivity results, we were also advised to avoid soy, dairy, eggs and peanuts until her labs returned to normal. Holy Moly!
Reorganizing, re-stocking and cooking in a whole new way became my full-time job—and I realize there are many more serious diseases to contend with in life. Our story is but a blip on the radar.
That said, it’s our hope that by sharing our experience, one might see how nebulous celiac symptoms can present in children.
My daughter grew steadily without severe nutritional deficiencies, yet her celiac lab tests were off the chart. Looking back, she’d probably had the disease since she was a toddler. Her most prominent symptoms?
Hyperactivity and insomnia…
We all know someone who knows someone with food allergies or food sensitivities. Times have definitely changed since my grade school years, living allergy free on Doritos, hostess cupcakes, and peanut butter. Not sure where we’re headed as a society, but dietary dis-ease steadily infiltrates our homes.
Food elimination as a cure or food alienation from fear of toxicity seems to be more present now than ever…GMO versus non-GMO, organic versus non-organic, paleo versus grains, raw milk versus pasteurized milk, homegrown versus store bought, naturopathic versus western medicine.
It’s my hope that until we know better, we walk steadily along with open minds, with at least one eye gazing on the beauty that is the middle road.
Ugh. I’ll never forget the day you schooled me in pull-ups and bare skin. Your sullen eyes meeting mine, your body slumped, helpless from the wrath of yet another useless consequence dropped upon you.
“Consequences don’t work on me,” you announced with the last bit of oomph you could muster.
Your three year old self knew. You knew it was hard to focus, sit still and follow directions. Something inside drove you ten steps ahead and told you to leap outta bounds.
I want you to know I heard you loud and clear. In that moment I said to myself, “Oh man, is she ever brilliant!” But at the same time I didn’t know how else to command your attention and make my mommy wishes stick to the forefront of your mind.
“Dear one, slow down! Please stop! You must stay in bed! If you do this than this will be your consequence…” And yet by the time the rules of engagement were made, you had already broken number four on the list.
Deep down, I knew you weren’t trying to drive me crazy. Yet at the same time, I knew something just wasn’t right. You continued night time fussiness, stubborn and picky reactions to food and perpetual drive to unconsciously sprint though time were a mystery.
As I look back, I see all the clues so clearly. I even investigated the biggest one when you were three and a half years old falling just short of revealing the golden nugget.
The clues were:
Extremely short attention span
Upper respiratory congestion
Expansive food aversions
Many/frequent aphthous ulcers in mouth (canker sores)
Hyperactive bowel sounds as infant/toddler/child
When you were an infant and toddler, I spoke with the nurse and pediatrician of your recurrent stomach noises, irregular stools, mouth sores and insomnia. But because you grew steadily and met every milestone, your symptoms were “within normal range.”
And most parents I spoke with during this time could meet me at my complaints, and it seemed through this or that, they’d found a way to resolve their similar issues. So even though I was hugged by parental condolences and medical reassurance, I still squirmed in my experience with you.
“Thank goodness,” I say, because if anyone knows me they know I’m not afraid to ask, yet another…question.
So when you were three and a half, I brought my tenacious wonder to an Allergist.
In hopes that we would uncover your dis-ease, I scooped you up and placed your bottom on the exam table. Shallow needle pokes infused possible culprits into your delicate skin. And there you were, innocent and oh so trusting in me while your eyes grabbed mine as a diversion. And at that moment, it was me who felt sullen and beat down. I couldn’t help but wonder if I’d gone a bit mad in my attempt to bring you, and admittedly me, a sense of peace.
Minutes later the results showed minimal allergies to molds and weeds. Regarding the foods, I had her test the one and only fruit you ate frequently, strawberries. The result? Negative. I also had her test milk since it was always a “stop sign” in your mind. Negative. Beyond that, she added soy since I’d turned to soy milk for calcium supplementation…YIikes! What was I thinking? Like Maya Angelou says, “When you know better, you do better.” That result was negative too.
For a kid who didn’t eat a variety of foods, I suggested what I knew, not even questioning a main component in your favorite foods…gluten.
So there we were, sitting so close to the golden nugget and yet so far away.
Over the next seven years, you powered through constant distractions and “hot stomachs.” No wonder you were more tired and less hungry than the rest of us Folz’s.
And then, December 2012 rolls around. Of course it was right before bed, when random kid thoughts and questions seem to ignite internal mommy screams begging for mercy. I bent down on one knee and told you this was the last question for the night. And you said, “Mom, you know that thing I’ve told you about, that always happens? Well now it’s happening at school and it’s making me uncomfortable.”
Well, that thing that has something to do with GI malabsorbtion and is very personal, finally sparred me to battle. How dare it torture you in public places? So that was it. You voicing your truth and me putting it next to your dad’s recent diagnosis of celiac disease gave us our next move.
The following day I called your pediatrician. I reviewed your health history with her again and added your dad’s recent diagnosis of celiac disease. She responded, “No need to come in for a visit. I’ll order the blood work right away and call you with the test results ASAP.”
Two days later, and after your brave performance with an apathetic phlebotomist, our suspicions were validated. Your results were outrageously positive. In fact so high, research suggests children with your test results do not require intestinal biopsies to confirm the diagnosis.
You have Celiac Disease.
Dang, that elusive yet oh so prevalent gluten! If only I’d known to question its effects on you. Maybe if I would have fought harder or threw a tantrum in the eyes of your healthcare providers, kinda like Shirley Maclaine in my all time favorite movie, Terms of Endearment, I could have saved you years of suffering. I could have saved you from me and my frustrated reactions and countless consequences.
Because the beautiful truth is now, eight months off gluten, you are grounded. You are calm. Your soul rests with ease inside your body, so much so, that I am randomly moved to tears as your motherly witness.
I see you now navigating the world with your shiny yet original living tools. As if the effects of gluten elevated them beyond your reach, and there you were, knowing you had everything you needed if only you could get…up…there…
And there is where you are now, basking in all your capabilities, unrestrained, aligned with your power, and full of hope.
I admire you, dear daughter, and I want to thank you for your smiles when you see me. Thanks to you, I’ve moved quickly through motherly guilt and shame to a land of self-love and forgiveness. It’s my hope that you continue to give me permission to be the healthiest mom I can be, and that I have the honor of listening to you and watching your growth for all the years to come.
And I gotta say, sometimes, when I need a pick me up, I sneak a peek at a scene when you were little, cherishing a cookies n’ cream ice cream cone or diving into a Papa John’s pizza freshly delivered. I secretly feel good that at least you had 10 years of high rise, doughy, and or crunchy goodness that, let’s admit, way surpasses the gritty fall apart texture of most gluten-free products today.
Dear daughter, I love you.
In my eyes, you are everlasting might with a smile.
After changing to a non-gluten diet I feel brighter. No more “hot stomachs” or being uncomfortable at school. Eating gluten-free is hard, but I have found some substitutes to things I like and some even better than the ones with gluten I wouldn’t have found these things if you hadn’t gone scouring the shelves at the grocery stores reading labels.
I’ve learned that many gluten-free things may not taste the best, but they will give me the nutrition to grow and be strong.
I miss having my favorite cookies n’ cream ice cream cones and Papa John’s pizza, but overall, I feel much better.
I feel as if I’m able to stay on task, concentrate better in school, and stay focused during my daily violin practice. I know it’s a lot of hard work trying to find things that are gluten-free and things I like…I am hard to please when it comes to that kind of stuff. I know it’s hard, but because of you finding things for me to eat and keeping my diet on track, I have gotten stronger on the inside and on the outside.
I love you so much.
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Ed: Bryonie Wise