I know you cried in the grocery store.
It was in the baking aisle, by the flour, with the big sale signs hanging on the shelves. You were standing there, looking at the flour, and then in your own cart. At the 16oz bag of almond flour that cost you $12 and the sweet rice flour. Then you saw the shelves loaded with heavy bags of white unbleached wheat flour.
And you started to cry.
Not a big sob, but the kind of cry that can’t be help.
It’s the cry that comes deep from within. Those tears of sadness filled your eyes as you glanced at the lady next to you freely loading her cart with five pound bags of flour. Gluten.
I know you were wondering if she saw you — you and your cart with baking goods — but clearly missing the white flour that was in all the carts around. You stared at her with your tear-filled eyes, wondering if she even thought about those bags of flour in her cart.
Did you ever think that last year was the last year, the last time baking with white flour? Did you appreciate that baking? Or, more than likely, you didn’t even realize what a gift it was not having to think about food and gluten every single day. Did you even really know what gluten was? Or that you would hunt it out to make sure it never entered your Samuel’s little body?
You’re tired.
You’re a fighter.
But, you see, you need to cry.
Everyone knows you are strong, and that you’ll do whatever for your boy, and that you want to find joy. But sometimes, especially right now, as you near the anniversary of your little boy’s diagnosis, it is needed to mourn. Don’t start rationalizing that it’s not that bad, or it could be worse, or we’ll just get through.
You’ll never be able to put that white unbleached flour on sale for $2.49 in your cart for your Samuel.
Never.
And that’s why you cried. Not because you are selfish, or thinking only of yourself, or all that — you cried because you love your boy. Fiercely.
Crying doesn’t make you weak, or make you not appreciate where you are, or that you’re not grateful.
Crying makes you real.
Celiac Disease wasn’t welcomed in your home.
You didn’t choose that for your Samuel. You wanted him to be able to eat the cookies with the white flour at Christmas. To be normal. Sometimes you mourn, and that’s okay. But, you know, I’ve seen you fight as well. There’s a tension in life, a balance, and living in that place can bring joy. Don’t hide.
He’s worth those fighting tears.
You’ll make new traditions, new cookies, and you will find joy.
You hear me?
You will, and I promise, you will find normal.
And joy.
~Rachel
Walking The Visual Journey
If you’re following the Brave Art of Motherhood Visual Journey . . . Getting to Tennessee was getting out. But taking my kids to beach was the start of a new day.
35 comments
I remember feeling that way when my daughter wanted to be free just to be a normal teen and go to pizza parties and eat birthday cake and the like. It made her feel so different to bring her own special pizza. I cried for her too. It is wise of you to realize much of our pain is our own pain not pain for them. My daughter is a wonderful young lady now and seems so much stronger and more real than her peers. As Ma in the Little House series says, “There is no great loss without some small gain.”
It is so hard to have a child that requires special care. Many people don’t realize how a condition like celiac or PKU or other metabolic or enzyme disorders hamper a child from being able to be in the mainstream. I have a friend whose daughter is extremely allergic to peanuts. A school class project had peanut shells in it and she went into shock. The teacher didn’t think.
Sending big hugs!! We went through 3 years of gluten free living with my middle child. Hers wasn’t celiac but was treated as such. Oh the continuing education! Those Christmases we made this recipe and decorated these. It was still making cookies!
Peanut butter cookies: 2 cups peanut butter, 2 eggs, 2 cups sugar. Mix together and roll into tsp size balls. You can cook then like this or squash them with the fork and make them pretty. Bake for about 15-20 minutes in 350 degree oven. Will crumble while hot so let them cool first. Can add 1/4 cup chocolate chips. Very tasty and very easy to remember!
We now have one with peanut and egg allergy so we don’t make these anymore 🙁 Those with peanut allergy could easily substitute with SunButter as we often do.
Just sending encouragement your way. It will get better!! You will find your little spot of allergy-friendly joy! And, even many freedoms as well. As you say, it just takes practice. And you have every right to grieve.
~Tricia
what a beautiful post…i hear your heart and your pain. praying God gives you joy even in the midst of this disease…hoping its not forever…
This post made me cry! I have a daughter, now age 16, who is autistic. We did a gluten free caseine free diet for 3 years. It helped heal her digestive problems, but it didn’t cause any improvements with behavior or language. (She’s completely non-verbal.) I’ve cried many times not only for her but for myself and my other children. It’s not easy to be “different,” yet this is something we and our families deal with every single day without relief. Thankfully, one day we will be healthy and whole in heaven! I’m so glad that this world isn’t the only thing we’re living for. In the mean time, we hang in there, do our best to be strong, and keep carrying on. Thanks for you post. While none of us would wish our trials on anyone else, it is so good to know that we are not alone.
Oh, my goodness, Rachel -I just wish that I could wrap my arms around you and give you a big hug! We don’t have the same challenges as you do with Samuel, but I know that I feel like crying every time I go to the store and *want* to buy healthy food just to find that it is out of our $50/wk budget….
Thank you so much for your honesty as well as your strength – you are such an encouragement!
Can I just say THANK YOU? Because, while I haven’t been officially diagnosed with Celiacs, even a little bit of gluten makes me sick in bed for days. I’m still trying to figure out a new normal…and I admit I cried when I thought about all the Thanksgiving and Christmas foods I won’t be able to eat anymore. And the fact that our grocery budget will never be the same. I always spend more than I expect to, but I have to be good to my body. It’s hard – it’s still a struggle for me. I only discovered this about 6 months ago, so I am still learning. At first, it felt so good to NOT feel sick to my stomach all the time that I welcomed the change in my diet and cooking. But, the holidays have been hard for me. I’m still kind of freaked out about what to do while I’m at my inlaws for a whole week. I’m worried I will be so stressed about cooking my own food…or I will accidentally eat something that will make me feel sick for days. Thank you for sharing your words here and for being real and honest about your struggles. It helped me today to hear this. Also, let this be a big virtual HUG to you – you are an AMAZING mom – Samuel is blessed to have such a fighter for a mom. 🙂
QUIT MAKING ME CRY. LOL I love you – and I have so many friends and family with Celiac that I am beginning to blame Monsanto on it. It has to be something to do with the GMOs in our food that aren’t labeled.
I pray you find wonderful recipes and make wonderful memories and that you do find joy in the baking – and in loving that sweet, LUCKY boy of yours. He’s got himself a wonderful mom!
Beautiful post, amazingly insightful and so true. Keep fighting!
lovin’ that sweet face as always!
I’m here praying right now.
Psalms 116:1-5 I love the LORD, because he hath heard my voice and my supplications. Because he hath inclined his ear unto me, therefore will I call upon him as long as I live. The sorrows of death compassed me, and the pains of hell gat hold upon me: I found trouble and sorrow. Then called I upon the name of the LORD; O LORD, I beseech thee, deliver my soul. Gracious is the LORD, and righteous; yea, our God is merciful.
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I’m touched by this post.I can understand what you’;re going through but don’t worry,someday, somehow you’re Redeemer will REDEEM YOU!!!
Great post! I know how it feels to be a child with an allergy (wheat, then dairy and eggs when I got older), but I feel it made me a stronger person and I have a better relationship with food than many of my friends do. I have to be selective of what I eat, so I don’t eat out a lot or eat a lot of junk food.
When times get tough, just remember that the Lord is looking out for you and your boy and that things will get easier. Hope you have a great day!
I hurt for you while I read this post. My little one has a nut allergy, but we are blessed that it is mild. Still, I wish it was something we didn’t have to worry about.
Hello Rachel, I just found your blog and I cried myself when I read this post.. I recognize myself so much in it! I was diagnosed with coeliac disease in 2010.. and even if it was a blessing finally knowing what was wrong, it sucks and it is tough. I usually stay positive about it, simply because I have to, but sometimes just want to yell at this disease..
Love you friend. You are an amazing mom 🙂
I can not begin to tell you how encouraging and uplifting this post is. No doctor ever listened to me, no doctor ever THOUGHT (maybe they just didn’t know, had never heard of celiac) so, I turned to the internet and did my own research and learned of an elimination diet. And everything that had gluten in it made me ILL.
So, no gluten.
We are at the beginning of this journey. Not a full month into it. and I sometimes feel so lost.
And then a friend sent me to this blog. THANK YOU! Thank you so much!
I burst into tears at the very first line of this post, and just kept going. I’ve been thinking I’m strong, it’s all good… but really, I just wish my little man could have gluten. And dairy. Luckily he is growing out of the severe egg allergy, but facing down the barrel of celiac is really tough. His first birthday cake was simply made from fruit. I’m practising with lots of different recipes, so that by the time he is two and beyond, and wants all the treats that the other kids have, he will have some yummy and delicious things to eat to.
Thank you so much for this post. I needed the cry! xox
Thank you for sharing. I am sitting in my office crying. Its been a year since my 6 year old daughter was diagnosed with celiac diesease. As a mom sometimes it just hurts. She gets invited to birthday parties and i dont want her to stand out but i always try to bring her something so she doesnt feel left out. She doesnt even seem to care. And i just want to cry. I think how tough she is. Thank you for sharing. i will enjoy reading the rest of your blogs.
Although I do not face this challenge with my own family, my si9ster does. She has 9 children, 6 of which have been diagnosed with celiac, and one is undiagnosed but shows symptoms. She has started a business because of it, called Totally Gluten Free Bakery. They have a facebook page which may be helpful for those struggling with Celiac… A number of the rest of my extended family also have celiac, several sisters and a number of nephews and nieces. Not being gluten free myself, I always have to think hard about what to feed them when I have them over…Blessings to all those that are new to this way of life, and know that tho it is a challenge, especially at first, it isn’t as limiting as it once was.
My child doesn’t have Celiac, but she does have a digestive disorder that makes her unable to eat wheat. She also can’t have many fruits/vegetables, lunch meats, sugars,etc. She was diagnosed in Feb. Usually we do okay. I go to the store with a list and a plan. This week I went to the store for on-the-go type snacks and found myself at a complete loss. 2 1/2 hours wandering the store trying not to cry as I realized this was going to be what she had to do for the rest of her life. I loaded my 4 bags ($98-I cringed) into the car and cried the whole way home.
I get it! I want to hug every mom I see who passes the wheat flour mournfully in search of something that won’t make her child sick.
That made me cry.just beautiful. My son was five starting school when diagnosed with celiac disease nd i am a single mum. I want to cry everytime i shop for school lunch foods or everytime someone sees me pouring over the ingredient label of food (i am a very petite tiny mum ) so they give me dirty looks like i am on an extreme diet.
I cry for my son who gets left out everytime because people are too wary of his diet to want to include him. My son is amazing and never complains never sneaks food and is so much healthier.
Thank you! I did not realize I had that deep , five-years from my daughter’s diagnosis cry just waiting for permission to rise up and out. I am grateful to you for bringing it out. Recently it occurred to me that maybe my daughter chose me in this world because I had the fight in me to take this on in her beautiful life life.
I am unsure about gluten, but rest assured it’s easier to find gluten free then soy and milk free.
Even kosher items have that horrible D or Dairy. And if it doesn’t, it has soy. :/
I’ve been there. I’ve cried over lost traditions. I didn’t cry at first. I’ve been GF for 6 1/2 years. My son for 3 1/2. This past Christmas was hard for me. Because of the traditions lost. And as if the GF wasn’t enough, we’re dairy free, tomato free, fish and shellfish free too.
I’m searching for support anywhere I can right now. I was just the mom standing in a grocery store in tears after taking a day off work so that I can figure out what to feed my child. He’s 20 months old and was just diagnosed with celiac disease after being sick nearly his whole life. I’m in the moment feeling every single thing you’ve written above. There are not words that can explain how much this means to me. I’m terrified for his future and I have no idea what to do. But it makes me feel assured that I’m not the only Mom that’s going through this and that there is a way. It hurts my heart that he’s so little and can’t understand why he can’t have the cookies he loves now. I hope you and your son are doing well and that you’re finding your way. Thank you for being an anonymous friend and supporter even if just for this moment.
This could not be truer. Mom’s of newly diagnosed, we have all been there. We have all lived this article. it gets easier and today we are so lucky for the options that are available. I’m so proud that my 7 year old boy will ask “Is that gluten free” before eating anything, but sad that he has to. My son has a disease that can be controlled, I am fortunate. Other moms are much less fortunate. It’s been 4 years for us and we have made wonderful memories of making cookies together. In fact, I can’t go back to gluten cookies, his are better! Many of the foods are better tasting. Yes, everything takes little extra work – planning a vacation or going out to eat dinner. He’s worth it all and more!!
Is this for real? I’m in shock that people are “mourning” over a good allergy. I was diagnosed with celiac disease a while ago, before there were hardly any options. But you know what? I also work with sick kids REAL sick kids, don’t know if they will wake up in the morning l, sick kids. You can’t eat regular cookies any more, big deal. There are kids who don’t get to eat, period. This takes first world problems to a whole new level.
First-world problem? Really? Have some compassion. I am happy it is easy for you, but it is okay to mourn and it is okay to feel sad. Feeling isolated is real and should not be diminished by anyone. AND just because you have good options doesn’t mean everyone does. Be careful you don’t fall off that high horse of yours.
Ally, here is my response -> http://www.facebook.com/findingjoyblog/photos/a.207974645908511.50602.194522453920397/1213227078716591/?type=3&theater
Approach and intention is everything when you’re discussing something, ESPECIALLY on the Internet. May we all pause and reflect and season our words with love and grace knowing that we all (mothers) have burdens to carry and battles to fight and none of them look the same. Thankful for the author’s compassion and sharing her story in hopes to connect and bring others together. I hope you receive the support you need now and in the future when you have any kind of trial in your life.
I wish I would have seen this when you originally posted it because that was just about the time we were finding out my oldest(4 at the time) had celiac disease. It’s so much more than not being able to eat a regular cookie.
Its a lifetime of being different. Which for adults might not be that hard. But for kids it is. I know this because I just sat by my 8 year old daughter at a birthday party as she ate her cup cake by herself, fighting back tears, because she didn’t want anyone to ask her why she had that kind. I told her you just tell people your body can’t have regular cupcakes…but its still hard.
It’s a fear of hidden gluten getting into your child’s body that can cause pain, problems and even cancer down the line.
It’s the fear of other things can can come along with having celiac disease as she gets older.
Most of all, its just wanting your kid to feel like she belongs and is just like any other kid.
I have four children…one with celiac, one with special needs and I want nothing else than for them to feel accepted in the world around them. And yes, there are many times when I find myself in tears because that’s the heart of a mom. 🙂
Compassion, yea I totally have compassion. Like it sucks! Pre planning food not being able to just go to the drive through yea it’s bad and it’s inconvenient! BUT how much better off is your kid going to be? gluteb is bad for you it slowly wrecks our bodies no matter if you’re Celeac or not! Read the book “wheat belly”. All I was saying is, there are people dying in this world because of hunger, and here we are having an argument on a blog that was written on at minimum an iPhone if not something fancier. We’re blessed, take the inconvenience and consider it still a blessing, were alive, we have more than we need, not being able to eat “regular” isnt the end.
Ally, it’s not the lack of food. It’s the realization of raising a child with an autoimmune disease. The food is an example of a small way life is changed. He was critically ill. When he was three he was in the hospital with complications from influenza aggravated by having an autoimmune. Could it be worse? Absolutely. Should I share with my almost seven year old that his illness is just an inconvenience while he gets all the lab work each year? Should I tell him that “it’s no big deal” that in school he has to not do certain things and he has to watch?
Or should I teach him empathy?
Because empathy is not making judgments on others or ranking each others lives on the basis of “it could be worse” — empathy is recognizing that for many people getting the diagnosis of having an autoimmune disease changes their lives.
Empathy means not making presuppositions and judgments on others — “written on an iphone” or “go through a drive thru” and so forth but rather understands the heart in which someone speaks.
Empathy is building up versus tearing down.
I am thankful that you are thriving and finding joy in life.
Oh my goodness. I’m writing this with tears streaming down my face. Not all of us have this fight for our children and I can’t imagine those who do. I fight this fight for myself and feel completely alone in it.
When I bake for friends, they act like they’re being brave for tasting it because it’s gluten free. Really? Have you ever stuck your finger in a bag of flour? It has no flavor. None. And, I immediately feel guilty, defensive, sad and hurt all at the same time. I can’t imagine going through that not only with children, but with their potentially condescending parents. So sorry for all of the parents who struggle. Much love to all of you!
4.5 years ago I was standing in the grocery store with tears as I hunted for anything I could eat. I had suffered almost 20 years of being sick with one thing or another; however, I didn’t fit the normal celiac image of being thin. I was overweight, had chronic fatigue, chronic aches and pains, my body was wracked with inflammation so much so that the dentist was gluing my gums to me teeth, my body turned on itself and ate the majority of my thyroid gland (which looks similar in protein to the gluten protein), icky sticky ear wax and so much more. I had just “tried” going gluten free for 2 weeks and it was only day 3 and I knew that this was the answer I was looking for. In just 3 days, I could feel a difference in my GI tract.
I cried more for the fact that gluten hides. Today, it’s much easier to find gluten free alternatives…but, that doesn’t make it easy. Add things like a latex cross-reactive allergy that eliminates a variety of fruits & vegetables, or the inability to handle A1 beta casein, soy, corn, any food preservatives or artificial sweeteners and the list of what I can eat shrinks immensely.
Still, after eating gluten free for 4.5 years, I still had some health issues. It wasn’t until I had genetic testing through 23andme that I unraveled homozygous polymorphisms in the methylation and detox pathways.
Being diagnosed as an adult was hard, as I knew what really good chewy pizza tasted like, or a fresh bagel, and Toll House Cookies. When you try a package of gluten free cookies for the first time and they taste like cardboard, and it cost you $7.00 for a dozen cookies, it’s easy to get overwhelmed. One of the things I learned was having a celiac diagnosis gives you the ability to claim the increased cost of food as a medical tax deduction:
http://celiac.org/celiac-disease/resources/government-benefits/tax-deductions-for-celiac-disease/
I made the mental shift to looking at anything containing gluten as POISON. That made it much easier to make the transition.
I came across this video in my early searches to find something that would help my family understand what I was going through. I’m not picky, I just don’t want to get sick. Grab some tissues before you watch the video:
http://glutenpro.com/blog/2011/12/05/uc-berkely-student-produces-digital-story-on-celiac-disease/
For children, in some ways it’s easier, thet don’t have the mouth feel memory of other items and earlier diagnosis prevents other health issues.
I have a great recipe from Gluten Free Baking Classics by Annalise G. Roberts for a gluten-free angel food cake. Everytime I take it to a party, everyone wants the recipe. They can’t believe it’s gluten-free!
A great big hug to all parents who have to provide for children with celiac or any other food allergy. You’re not alone!