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.
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.
22 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.
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