It’s been a year since our daughter was diagnosed with celiac disease and it’s hard to believe how far we’ve come as a family. At the beginning it was so daunting—we didn’t even know that celiac disease was an autoimmune disorder and we didn’t understand how complicated the risk of cross-contamination would make cooking and eating out. To top things off, our daughter had signs of another possible autoimmune disease, which is common in people with celiac disease. Our learning curve was steep, but the good news is that we learned and adapted. Even by the first six months, things started to feel more manageable and we could see that we would be able to tackle issues and situations that seemed like obstacles at the beginning (you can find my article for parents who feel overwhelmed by a new celiac diagnosis here).
To most adults it might not sound so hard to eat gluten-free, especially in today’s society. But if you add the fact that with celiac disease you have to ensure that cross-contamination doesn’t occur (e.g., the hot dog can’t touch the bun, everything has to be cooked in separate pots and pans, and anything fried has to be cooked in a dedicated fryer, which is very rare to find), it gets more complicated. On top of that, imagine if you were a kid. You might not fully understand why you have this illness, but you definitely know that you can’t eat like everyone else and you are different at EVERY event where food is involved. Pizza is the foundation of most kids’ events, not to mention cake, cupcakes and cookies, goldfish and pretzels. Yes, there are gluten-free versions of each of these, but what child wants to feel different and have to bring alternative foods to every party or get together?
Over the past year, I have watched my daughter navigate her new celiac diagnosis like a champion. I am so proud of her! She knows how to ask if food is gluten-free, and she knows how to manage it when she is often told that she can’t have what is being served. Sometimes she cries out of frustration when she gets home from a party, but other times she just rolls with it. As parents we constantly plan ahead, and we eventually figure it out. And more than anything, my husband and I have been absolutely in awe with how considerate so many teachers and other parents have been during this year. These people have helped us adapt to our new world, and they have gone above and beyond to ensure that our daughter doesn’t feel left out. In honor of Celiac Awareness Month, the end of the school year, and my daughter’s 1-year anniversary of her diagnosis, I wrote this post with gratitude for all those people who have made life so much easier for us and for our child:
Thanks for letting me talk about the celiac diagnosis and for not minimizing our experience
Any big adjustment or health concern is so all-encompassing, especially when it relates to your children. You are raw at the beginning and it feels like all you can think about. Even when you know things could be much, much worse, it still takes time to adjust. At the beginning my daughter’s health was on my mind constantly. I practically started conversations with strangers at summer parties by talking about the celiac diagnosis and food options. With my own friends, I know I talked about it all the time—about lab results and research, and how to handle upcoming events and situations. I’m so grateful to those friends, teachers and colleagues who let me talk about and process this new change in our lives. I’m also grateful to those people who didn’t minimize things by saying “at least there’s gluten free food everywhere now!” or “at least you know what she has!” Even though this is all true, I appreciate that our friends knew that any health adjustment can be hard, and that sometimes just listening is the most supportive thing you can do.
Thanks for asking questions about celiac disease
We’ve learned that to ensure our daughter’s safety, it’s much better to ask than just assume. We are constantly calling ahead at restaurants and asking questions once we get there. It’s amazing how much ‘fine print’ there is when it comes to food safety and gluten-free foods. For example, while there are many pizza chains that now have gluten-free pizza, if you call or read the fine print you see they can’t guarantee the pizza won’t be cross-contaminated and don’t recommend it for people with celiac. I am so grateful for our teachers and friends who have asked us before planning meals, and have let us know when they want to learn more about celiac disease. Also I’m so appreciative of those who are understanding when we explain what we’ve learned about celiac and the foods and practices we have to avoid. It might seem like overkill to most people, but once you understand the disease you realize what is required to manage it effectively and ensure safety.
Thanks for putting in the extra effort to help our daughter not feel left out
This is the one that makes me cry, every time. The mom I texted to let her know I’d be sending a gluten-free cupcake with my daughter for a birthday party who texted back to say she had already bought her some gluten-free cookies. Or the afterschool teacher who called to say she was planning a big cooking event and wanted to make sure she was using ingredients that our daughter could have. Or the family friends who bought chips for a BBQ that were all gluten-free so we wouldn’t have to worry about my daughter eating the wrong kind. None of this was required, but these gestures meant so much to us.
Thank you to the friends and parents who pull us aside before a get-together to let us know what is safe for our daughter to eat. Thanks to the daycare and school teachers who have asked to meet with us to learn more about celiac, and who have tried to ensure that our daughter doesn’t have to always have a separate snack or treat. Thank you to the friends who make their dishes with gluten-free soy sauce just so we know our daughter can have her favorite food. The list goes on and on…
Thank you ALL for going above and beyond. We would never expect that everyone would do this, but please know that it is so appreciated when you do!
P.S. The picture with this post is from a gluten-free ice cream party my daughter had with a few friends to celebrate how well she has managed her diet over the past year. Sometimes you have to splurge 🙂
If you are a parent of a child with celiac disease and have questions about our experience, please don’t hesitate to send me an email!
Our days as parents are full of unexpected moments, from behaviors to emotions, to interactions with others. In the midst of all the flexibility that is required to roll with these momentary changes, it’s nice to know that some transitions in our lives are completely predictable. The change of seasons is one of them. Mother Nature has created a world for us where weather, plants and animals will predictably transition. In some parts of the world, the transitions are smooth and subtle, and in others they bring quite dramatic change. Either way, the changes happen and they always provide an opportunity for adjustment and growth.
Here in Wisconsin, Spring is just about ready to pop. We are all excited about warmer weather, longer days, sunshine and gardening. There is a sense of growth in the air, and an urgency to do some ‘Spring Cleaning’ to make room for the new changes.
Recently I’ve been reflecting on how we can do Spring Cleaning for ourselves, internally and emotionally. It seems we have the chance to do some personal dusting and washing, some clearing out of the old, unproductive aspects of our lives that might keep us stuck emotionally. We can find those hidden piles of dust in the corner and move them—either out of our lives entirely, or at least get them closer to the dustpan and the front door. We can look at that stain on a couch or sweater that has been there for months (or years), and make a decision to start working on getting it out.
Below are 3 simple questions to get us thinking about what might benefit from internal Spring Cleaning in our lives. As you’ll see, they’re all somewhat related and ask about similar processes, but in slightly different ways.
What patterns keep getting repeated in my life that aren’t useful to me?
This question usually gets illuminated during or just after times of stress, when we have that discouraging thought: “this always happens.” Maybe we realize a certain behavior always seems to set things off in the same way. Or maybe we realize we are discussing the same difficult issues with people we love, but nothing is changing. Either way it can be so disheartening to feel like the pattern can’t be broken. This is our sign that it’s not useful to us, and something might need to be changed.
What expectations am I holding onto too tightly that might not be useful for me?
This question requires us to confront the fact that it is hard to loosen our grip on expectations. We can rationally say “I realize life isn’t always fair,” but it is an entirely different thing to experience something very difficult and feel the pain of the reality that life isn’t fair. Similarly, we can have hopes and dreams for our children and relationships, but it is awfully hard to allow those to change because they are important to us. This question usually gets illuminated in times of disappointment or frustration. When do we notice the sadness that something didn’t work out as it was supposed to? When do we feel frustrated that the world hasn’t come together perfectly to facilitate the plan we had designed? These are our signs that we may be holding on so tightly that there isn’t room to flow with the changes of life.
What perspectives do I have that could use a slight alteration or shift?
This last question is all about how we view and make sense of situations and people. For me, I can usually identify perspectives that aren’t useful because they are stated in all-or-nothing terms in my head. Whether it’s a judgment of a person, a conclusion about how an interaction went, or a definitive statement about myself, I can see I am describing the world in absolute terms. I also notice that I become fixated on that one perspective, repeating it often in my head, and I’ve left no room for an alternative way to think. These are usually the times I know that I am stuck in a viewpoint that doesn’t allow for change.
These three questions require us to identify things that aren’t useful—in essence, negative aspects of our experiences–so that we can begin to find space for those things that will be more useful to us. It is not about running away from the negative or stuffing it in a corner; rather, it’s about bringing it all to light and starting to understand it better. Sometimes just the process of spending time to reflect on these questions and answer them honestly is an accomplishment.
Once we have increased self-awareness, the question naturally becomes “Now what?”
I ask myself this a lot, and I am learning to sit with the fact that I don’t have an immediate answer. I don’t know how the story will end, I don’t know what will change, and I don’t know if it will all work out. I believe this is all part of the process of cleaning.
For now, my Spring Cleaning involves taking the time to find those hidden stains and spots of dust and begin to notice them. Even though they might be painful and annoying I might be able to find love or humor in them since I know that they are an essential part of life. For now, I’ll bring them forward and start to shake things up. I’ll poke and prod, and maybe even sweep or get a washcloth. Tomorrow, we’ll see what I’ll choose to do next. Like every day, tomorrow will be a new season of possible change…
For families who celebrate Halloween, this is a really fun time of year. Yes, sometimes there is a scramble to get the costumes together at the last minute, but overall it is pretty darn sweet to see our kids all dressed up and watch them trick-or-treat.
The only challenging thing is the ENORMOUS bags of candy that only seem to get bigger and bigger with every fall festival, classroom party, and doorbell that they ring.
So, I’m on a quest to find out what my fellow mamas do with all that candy…
In my house we tackle this in 4 very non-creative, simple ways:
1. Outsource: I bring bags of candy to my grad students. We unload some of the candy, and students seem happy.
2. The Magic Candy Bag: We have a bag, stored at the top of the cupboard that holds all the goodies. It is not magical but the kids look at it and talk about it as if it was. This bag becomes very useful for bribes (e.g., “if you finish those last 2 bites of asparagus…”), as well as spontaneous rewarding (e.g., “I’m so impressed with how you cleaned up without being asked to” – wait, I’ve actually never used this one before).
3. Hope for temporary memory lapse regarding the Magic Candy Bag. When the girls were younger, after a few days they seemed to forget the bag was there anymore. Thank you, Piaget and lack of object permanence! As they have grown older, however, their cognitive development has increased (imagine that), especially in the area of treats.
4. Eat candy myself: This one is pretty self-explanatory, but I’ll just note my husband likes to join in on this too.
I keep thinking there must be more ideas somewhere…isn’t there a creative Pinterest activity for melting the candy and creating a dessert or sculpture? Maybe a Lego-inspired candy castle that we can try to make?
My fellow mamas, what do you do with all that Halloween candy this time of year?
Has your child ever done something embarrassing, like grab something off the shelf at a store and throw it, have a meltdown at the doctor’s office, or run behind the rope at the museum exhibit and refuse to come back even as you are yelling (begging) them to return?
Of course they have–it’s happened to all of us.
When I first became a mom I noticed that when these things happened, I would become extremely flustered and brace myself for judgment or looks of disapproval. Instead, what I found was that I was often lucky enough to see a mom nearby, and to catch a smile from her, or a knowing look and wink. Sometimes, a kind mom would even come over to help and strike up a conversation about how difficult it is, for example, to take the kids grocery shopping. In those moments, I felt intense acceptance and affirmation. I realized that other moms understood, more than anyone, and that their reassurance and support could lift me up in ways I never expected. I developed this website to create a space to give that (virtual) knowing look and smile to other mothers, and to share strategies that we moms can use to cultivate our strengths.
I hope you will take a moment to check out this website, including the Hope Notes for Moms and Resources page. If you like what you see, consider using the “subscribe” button on the home page to subscribe to my blog and receive blog updates directly in your email inbox.
Talk soon, Mama!