Dear GF Friends,
Maybe this sounds dramatic, but don’t all parents dream of a future where the sky is the limit for their kids? I think back to 6 years ago when we received our daughter’s celiac diagnosis, I cried privately in the pantry while transitioning our house to be dedicated gluten-free at that time. I felt heartbroken thinking she would never have a doughnut again, or bread that was soft again. I want to make it clear that I am always aware of how our woes could be worse. I am aware that a celiac diagnosis, although hard, is actually a BLESSING! Yes, you read that right. There was a day, not all that long ago in history when no one knew the cause of illness, the stomach pains, often leading to death. A connection to wheat as the culprit for illness wasn’t made until post WWII, diving deeper and discovering the issue was specifically gluten didn’t happen until the 1950’s. Enough history, the point is that this was not all that long ago in history, so to have this information today, and to be able to have a diagnosis is truly everything. The health of a celiac depends on a gluten-free diet, and we still have a way to go in society to make living gluten-free in the most celiac safe manner, easier. Although life is full of food precautions and that can be annoying, and lonely at times, it is no longer a fatal condition to have. Treatment is not only possible where effort is applied, but also actually more delicious than we initially imagined.
Raising a child with celiac means limitations, adjustments, but our child is HEALTHY! For this, we are beyond grateful. Our celiac child has a more extensive health history than I will get into here. Medical diagnosis is hard, especially for a parent to receive about their child. My focus for this blog is to talk about celiac, our journey, what we have learned, how we travel, how we raise 3 other non-celiac kids while (hopefully) making everyone feel equal. Inclusion and empathy are huge topics for us.
Almost 6 years ago is when our daughter was diagnosed. She was barely 3 and was not always the clearest with her speech or expressing how she felt if she was sick. Occasionally, she would stop mid walk, grab her stomach, double over, and then pop back up and keep going. We knew something was wrong. She would get excessively tired, and just wasn’t herself. Her pediatrician ordered labs which included a celiac panel, sure enough, the results pointed to celiac, and we were encouraged to see a GI Dr. I’ll save what happened next for another day.
Meanwhile, at home, we felt like our world was turned upside down! What do we eat?? At that time, besides our daughter, we also had a 4-year-old son at home who was a picky eater and well established within his favorite food routines. We made the decision that our house needed to be completely gluten-free to best support our daughter. Every family is different, and we made this decision based on what worked best for us at that time. We were just getting into learning about cross contamination, the arguably worst piece of it all when it comes to a gluten-free diet that remains celiac safe. We knew that little 4-year-old hands could not keep from contaminating food surfaces shared with our 3-year-old daughter. We knew that without eliminating gluten containing foods in the house, we would set ourselves up for failure where tantrums and confusion over differences in food being served would run aplenty. So, there I was, crying in our pantry, throwing away goldfish crackers with such sadness as if those goldfish were deceased family pets loved by all, never to be had again. The guilt I felt when I thought about her 1st birthday smash cake, or how joyful she was when we would surprise our kids with doughnuts for breakfast. One of her favorite routines was to get a cake pop when she tagged along on a latte run. Although little, suddenly those favorite traditions had to stop. We can only work with the information we have, right? Feeling any sort of guilt, that’s just not providing ourselves with the grace we deserve.
This is a love letter to my previous self, and to anyone else who needs to hear this, everything is going to be fine. Yes, it will be hard, yes, people have it worse than you but being in a category of parents who raise a child with special dietary needs, be it celiac disease or fatal allergies, that’s leveling up in the parenting worry game. I’ve never been one to sit back and feel out of control, now to coast forward void of anxiety, yeah that doesn’t happen. I try to control my controllables, and I do love to bake, so I started learning how to make the doughnuts, and where I can find the best alternatives. Us parents of kids with special dietary needs, we have to navigate life differently, the birthday parties, the holidays, school, life is so much about food and man it can feel lonely and annoying to be guiding food with such tight restrictions. That’s ok though, we are in this together, we do things differently, not worse, just different. We stand out, and we raise kids who are so good at advocating for themselves. We raise kids who feel confident enough to speak up and say what they need. Maybe, we are raising leaders, empathetic, resilient kids. Now that doesn’t sound so bad, maybe what feels like a setback, is actually propelling them forward. 6 years ago, I would like my previous self to have known that with a little extra planning, she won’t feel left out socially, at least not quite as much. Unlike the goldfish crackers, we aren’t all cookie cutters, we’re a bit more special than that and although we are what we eat, we also do not need to be defined by our food.
Love, Tiffany
xoxo
