From the time my daughters were born, both were very picky eaters. A healthy diet has never really been a norm for them. So when my youngest, at 14, started having bowel issues I chalked it up to poor diet. We began with vitamins and fiber to help her many bathroom trips a day. I had the backing of everyone in our lives who knew her love of chicken strips, chicken nuggets, french fries and peanut butter sandwiches. What about veggies, you ask… so did she. She didn’t care for or about them. Fruit wasn’t even part of her diet. Unfortunately, her symptoms progressed over the next month and a half. A coworker finally said, “She cannot sh*t herself all the time; get her to the doctor!” So I did. We went to Urgent Care and it was that day I was made aware she had blood in her stool by hearing her tell the nurse. I felt like the worst mother in the world. How did she not tell ME this? We were sent home to collect a sample. This was when my life changed drastically. There was blood… LOTS OF BLOOD! I panicked and we ended up in the Emergency Room at the insistence of Urgent Care staff.
After about a month and half wait after our ER visit, we finally got to see a Pediatric Gastroenterologist. No other doctor would even touch her since she was only 14. He quickly did labs and got us in within a day or two for surgical testing. They probed her from the top and bottom and we were told she had two chronic diseases: Celiac Disease and Ulcerative Colitis (UC). Both would be life-long struggles.
The more severe of her issues was the Ulcerative Colitis. She was immediately put on steroids and several other medications due to a her body not absorbing needed nutrients. At one point she was taking 19 pills a day. Some pills have since gone and we are still trying to find the correct treatment for the UC, which will be a struggle for a while and a lifetime regimine. Celiac disease is only treated by a strict gluten-free (GF) diet. Sounds easy enough, right? Well for my kid, it actually was. We found foods that were premade substitutes for foods she loved, even pizza! Her tests for Celiac disease are getting close to a good level, but the real struggle of being GF had only just began for us.
Being GF at home is manageable. She has her own foods, labeled to avoid cross-contamination, her own cooking equipment and her own counter space that we keep gluten products away from. We have wonderful apps on our phones that allow us to check foods that are not already conveniently marked GF (many are clearly labeled) and even apps that find us restaurants close to wherever we may be that are rated by other GF people. Easy, yes? NO! It finally hit me that I was THAT Mom when we were in a large city for her doctor appointment.
The first restaurant we entered that was provided by the “Find Me GF” app did not have GF food on the menu and employees who were clueless as to whether or not foods were GF. We settled on a pizza restaurant, again suggested and rated well on the aforementioned app. But as we stood in front of a buffet style assortment of toppings and I watched them flop the lump of GF dough onto a press, I began asking THOSE question I would have rolled my eyes at just half a year ago. “Is that a GF dedicated press? Is that a GF dedicated pan? How do you avoid cross-contamination of the sauce? Is that cheese GF?” OMG! I was THAT Mom!!!!!!
I would like to think that we are in a society of tolerance, but I see the funny comic strips where Jesus is surrounded by his disciples as they ask, “Is there mercury in that fish?” “Is that bread gluten-free?” I understand that we humans have probably caused our current medical issues with modification of foods and growing methods. Unfortunately, I cannot take away my daughter’s disease. I have seen the issues she has had from both UC and eating just a small amount of gluten, after she eliminated it from her diet. It is not pleasant. None of use want to be sick and in a restroom half the day feeling like our insides are a hot mess. As a mom, there is nothing I can do to permanently help her. Prevention of symptoms is my only tool. Therefore, I will be THAT Mom if that is my only “superpower” in the injustice she has been served. I will ask questions, I will hold up a line, I will walk out, I will educate, I will ignore the eye-rolls and comments because I am her only Mom and advocate… and I will take one for the team. Good Moms do what they need to for our kids even if someone is saying, “Ugh, she is THAT mom!”
