Dear Fellow Parent,
Though we've never met, we share something important in common: we both have a child with celiac disease.
When my 7-year old was first diagnosed, I felt sad and overwhelmed. I knew things could be much worse but I was still extremely worried about her health and how we would adjust to all the changes. Everything seemed daunting at that time.
Through all the blood draws, the endoscopy, the multiple doctor's appointments and the 4.5-hour celiac class at the hospital, there was one thing I wish all (or any) of our healthcare professionals had said to me and my husband:
"You can do this."
Now that several months have passed since our daughter's initial diagnosis, I'm here to give YOU that message. You can do this.
Things are much less overwhelming for us now, and our daughter has adapted well to her new world. There are still hiccups here and there, and situations which demand a lot of planning and care, but with each situation we learn and gain some confidence that we can do this. Most importantly, we learn that our daughter can do it too.
Here is a list of some of the things that felt overwhelming at first, but which feel much easier now. These are things that you will figure out how to do over the next months, just as all of us parents of children with celiac disease do:
*You will learn more than you can imagine about celiac disease. When our daughter was diagnosed we didn't even know that celiac disease is an autoimmune disorder. We didn't know all the symptoms it could cause (like our daughter's short stature), and we didn't understand the concerns about cross-contamination. We certainly didn't know that Twizzlers and Playdoh have gluten in them! In the process of adapting to this change we have learned so much, just as you will. Before you know it you will be teaching others important facts about this disease. At the bottom of this post are some of the resources/websites we have found most helpful.
*You will be able to navigate birthday parties, playdates, school parties and field trips. All parents worry that their children will feel left out. When I heard that there were no other children in my child's elementary school who were gluten free I panicked. With time, and with each new situation, I have realized that even if my daughter is the only one eating gluten free we can still make it work. We have learned to involve our daughter in picking replacement foods and we have tried to plan in advance as much as possible. Most of the time things go very smoothly.
*You will learn to read labels and do grocery shopping. Initially grocery shopping took lots of time and emotional energy. I would wander the aisles feeling the highs of discovering that a certain food was gluten free, as well as the lows of discovering that a favorite type of raisin or nut, for example, was processed in a facility that processes wheat. It was exhausting at first. Over time, I became quicker at reading labels and also started learning what kinds of foods were safe and things we liked. Grocery trips are much more efficient now and we have learned to focus on what we CAN eat (which is quite a lot!).
*You will learn how to advocate for your child and you will start to teach her those skills. We do a lot of calling and planning ahead now. We have learned to say things to people that may not be 100% accurate, but which alert them to the serious nature of celiac disease (for example, "My daughter has celiac disease, which means she is severely allergic to gluten"). We ask a lot of questions and always err on the side of caution, even if it is inconvenient for someone else. And every time my daughter asks me if something is gluten free, even if it is something I have prepared for her (and obviously is), I compliment her for asking me and for taking responsibility for her health.
*You will be able to go out to dinner. Going out to eat was something we used to do frequently as a family. We love to try and eat new food. It takes time, but you will figure out if this is possible for your family depending on the options in your area and how confident you feel about how certain restaurants handle cross contamination. We have found a solid amount of places we feel are safe enough to eat at. And as I'm sure you've noticed, there is more attention to gluten-free options everywhere. I keep reminding myself our kids' futures will get easier when it comes to avoiding gluten.
*You will figure out how to set up your kitchen. Every family decides if they are going to be a gluten-free or partly gluten-free household. I've found that the decision usually depends on the age of the child. In our family we decided to eat gluten free at home, with the exception of bread for me and my husband's sandwiches for work. We purchased a new toaster, updated our pans and colanders, and had to become much more attentive to double-dipping (e.g., be sure to use a clean knife each time you dip in the condiments!).
*You will see your child's health improve. This, of course, is most important. Though our child didn't have the typical GI symptoms (her short stature was the symptom that started the testing process), we didn't know at the time that she had anemia. Once she became gluten free her energy level increased in amazing ways. She also started growing. There are likely other things we will need to do to continue to heal and support her gut, but for now being gluten free is contributing to her good health. I am grateful that we discovered she has celiac and can't imagine how bad things could have gotten had we not known for many more years.
*You will find others who can support you. There are many people who will be able to support you in the next months. You will have family who are eager to help and learn about the disease. You will find friends with children with allergies or autoimmune disorders who will provide much-needed empathy. You will find yourself moved to tears by the person who plans a play date or party and thinks to ask what they can serve for your child. You will be grateful to the after school teacher who picks an alternative recipe for the holiday baking activity. Yes, some people will disappoint you in their dismissal of what you are feeling or the serious nature of the disease, but the vast majority will at least try to understand. Focus on those that are there to support you.
While I know that every family has a different celiac story, please know that you are not alone. You can do this. Your child is resilient because she is young and has you giving her support and love. She is strong because she is healing and she is learning to become an advocate for herself. And even if she is young, she is beginning to understand that this is her new world. You all can do this.
If you ever have questions about our family's experience with celiac disease, please send me an email to: firstname.lastname@example.org
*Here are two helpful organizations/websites with information about celiac disease:
Celiac Disease Foundation
In many ways Fall reminds me of being pregnant or having a new baby. Everything is in flux. Outside leaves are changing and falling, the weather is becoming cooler, and nature seems to be preparing for a new season.
âInside, things are changing even more quickly and dramatically when we are pregnant or postpartum: our bodies, our homes, our emotions, our partners and our family life.
In any time of transition, especially as we welcome a new baby into our lives, we can feel incredibly unsettled and overwhelmed. This is normal. In these times it is critical to find ways to be grounded, just like the trees outside whose leaves are being blown in all directions during Fall. We need strong roots and a sense of being supported.
Below are a few suggestions for how to stay grounded during times of change:
*Find some time for yourself. For moms with children, even a brief moment may be hard to find. Still, it is important to try to identify somethingâwhether it be a few minutes in the morning in the bathroom or a break during the evening if you have a partner or friend who can help. Try to avoid turning on your devices for at least 5 minutes so you can have a moment to yourself to sip some tea, flip through a magazine, or just sit quietly and listen your favorite song.
*Nourish your body. Make sure to eat, and try to eat some snacks during the day that will support your health like fresh fruits and vegetables and nuts. If you can, move your body during the day. Take a walk with baby outside, or do some gentle stretches while you are on the floor. Every little thing you do will help your body and mind.
*Take a moment for imagery. Sometimes in the midst of chaos and feeling overwhelmed, we need to quickly get re-centered. The following exercise is simple but the best part is that you can do it while you are holding your baby: Take a second to imagine you are a strong tree with deep roots. Picture how solid you are. You bend with the chaos because you have to adapt, but at the core you remain firm and strong. Come back to this image when you need it!
*Rest when you can, and rest well. This one is always funny to moms, but itâs important. Even though you may not be getting more than 1 hour of rest or sleep at a time, make sure that time is as good as it can be. Try not to get distracted by social media or other responsibilities that can wait. Some moms actually get their âspaceâ readyâthey prepare the pillows and a blanket and turn off their phoneâso that when the moment comes for rest they can dive right in.
*Reach out to others for support. All strong trees (and mamas) need food, water, and care. Others in our life can serve in this role of providing care for us. Sometimes we donât know exactly what we need, but we know we could use some help. If you have a partner, family member or friend who you think can provide support, let them know. Maybe you can just ask for a meal to be cooked, a visit so they can hold the baby, or a phone call to talk.
âIf you are unsure of what you need or prefer to talk to someone who isnât in your immediate circle, consider calling the Postpartum Support International Warmline at: 1-800-944-4773.
Remember, fellow mamas, you are doing a great job and your roots are strong. Take care of yourself and reach out for support when you need it. We are here for you!
This morning during the chaos of pouring cereal and children bickering over a Lego figurine at the breakfast table, I tried to get my husband’s attention. He hadn’t heard the news yet so I knew I couldn’t let him start his day without telling him what had happened. As I whispered into his ear my words came out awkwardly, like a pilot giving instructions without using complete sentences: “mass shooting…over 50 people were killed…outdoor concert…” When he finally grasped what I was saying we looked at each other and no words came out.
The kids continued to get ready for school and I distractedly packed lunches, put away breakfast, and got myself prepared for the day. I remember wondering if I should say something to them? It felt too horrific to talk about just now, but I worried that my oldest might hear from someone else at school. Then what? What kinds of fears might grow inside of her before we had a chance to talk? What misinformation would she get?
I knew it would be too much for my youngest, especially because she had recently started asking big questions. Like what happens when you grow old and whether or not you come back as a baby once you die. Her innocence makes my heart ache and I wasn’t sure she could grasp any of this.
So, I said nothing.
I went through the motions and got them in the car. We listed to KidzBop and I gave them huge hugs as they left the car. As I watched their little bodies walk into school I thought to myself,
This is parenting: trying to protect my children from the real world, while knowing this is the world I have to prepare them to face.
If your children are privileged, like mine, this process of facing reality has been gradual. There was no extreme suffering at a young age for my kids, no witnessing of disasters or violence. No perpetual discrimination, trauma, or major hardship. Even with the expected pains, losses, and health concerns that we’ve endured as a family, I’ve managed to keep hidden from them some of the scariest parts of living.
But I’m aware that just as it’s my responsibility to protect them to some degree, it’s also my responsibility to gradually, inch by inch, lift off the fabric to reveal some of the awful parts of life. To show them that scary things happen, and to hope that they will feel. Feelings like empathy, sadness, shock and anger…and motivation to help others and alleviate pain in the world. And hopefully they will realize the tough lesson that I am still working on—to treasure each day.
I’m not sure what I’ll say to my kids about what happened in our country today. I may just wait to see if they ask questions. If they do, I will probably stifle my tears and fumble around with my words until I say something that sounds reasonable. Something that gives my children peace that they are safe right now, so that they can get to sleep without fear. And then I will give them huge hugs… because that’s all I have for now.