Yesterday, yesterday on a very cold March morning, I saw my Samuel, for the first time ever, get irritated that he couldn’t eat gluten. There was a bagel sitting on the table, a chocolate chip bagel from Panera bread that we got from church, a bagel left there by Elijah. It didn’t matter that it was a day old bagel or that it was dry. What mattered was that to Samuel it was gluten.
And he cannot eat gluten. Ever.
He saw it sitting there on the table and went to look at it.
It gwooten free, mamma?
I told him no. And that I was really sorry, but that it was gluten bread.
I saw his face. Crushed. Irritated. Annoyed. And then sad.
And then, for a second, mad.
Mad that he couldn’t have the gluten bread. He looked up at me, and told me yucky gwooten, yucky gwooten. And then he came running to me upset. The mad left as quick as it came, and with it just came a bit of sad.
I hate, hate, hate that he cannot eat that day-old chocolate chip gluten bagel that we got free from church. It is not fair and causes my momma heart to hurt for him. Then again, at dinner, while we were eating tacos, Caleb started asking about gluten and if Samuel, in heaven, would be able to eat gluten.
More tears in my eyes.
I get stuck in the whys and the it’s not fair about celiac disease. I get stuck thinking about the times when he’s a teenager and he can’t just grab something in the store, or go through a drive-thru, or order in pizza. And those thoughts? They, honestly, make me weep inside.
I’m his momma. I am supposed to protect him. Guard him. Help him. And sometimes, celiac disease feels like a very helpless position to be put in.
He may not ever get gluten. But, his momma will fight for him. She will talk about celiac disease and gluten free living and bring awareness because she loves him. Like crazy, crazy, crazy love and she would do anything to fight for him kind of love. It’s that love that got me talking to all sorts of people at Blissdom — with Johnson and Johnson, and Con-Agra foods, and Hershey’s Chocolates, and V8, and Abbot Nutritionals, and California Raisins, and more and more about Celiac Disease. It’s that love that pushed her out of her own comfort zone when she shared Samuel’s story with them and asked them to listen. To help.
It wasn’t about numbers, recognition, or stats. It was about love.
And helping other families who deal with Celiac Disease.
Sigh. That sweet, sweet boy of mine. The boy, who was mad because he couldn’t eat a bagel, is worth fighting for. He’s worth writing about Celiac Disease and talking with others about gluten free living. And, my friends, he’s worth sharing with you that, even if you can’t eat that day old chocolate chip gluten filled bagel, your life can still be full of joy and good things.
See that face?
I love that face.
It’s an I love you forever kind of love.
A fighting for Celiac Disease , and take that you you gluten full chocolate chip bagel, awareness kind of love.
It’s a mother’s love.
23 comments
you are a good Momma Rachel, and the fierce mother bear protection you have for your baby is beautiful. Jesus knew which Momma he needed when he hand picked you for the job. Keep it up, and I am sorry your heart hurts.
tears. ditto everything marlece said. you’re a beastly mother. :))
-jocee <3
oh that must be so difficult!!
I can so relate. I cried over fried chicken once. My sons too have had the when you get to heaven you can eat peanut butter, ice cream, store bought cookies, etc. conversation. It melts your heart.
My son wouldn’t be able to eat that bagel.. gwooten or no gwooten. It probably has soy in it.. or eggs or dairy or made in a facility that has those things. My son is allergic to peanuts, tree nuts, eggs, milk, and soy. I’m so thankful he can have gluten!.. it’s one of the things he can eat without a trip to the er.
Your Samuel and my Connor have the similar serious issues with food.. just the opposite ones! We share the same struggles and triumphs, but I know our great God gives us strength for this journey we’re on… and it’s sure not an easy one!
Cheers to you for your strength to fight and share. We cry. We pray. We love our boys with all that we have. We pray some more… and hug them like no tomorrow!
Oh my very sweet friend, such love and fight in you that you have. You will fight the fight for your boy, and your love for him will spur change for thousands just like him.
You are Mom, hear you roar … and i will shout this from the rooftops for you if it makes just one teeny bit of difference xxxx
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I can so relate to this. I spent a year with tears running down my face each and every time I went to the supermarket, knowing that my severely food allergic child could not eat 99% of the food at Wegman’s. The other night he broke down, just wishing he could taste some of the foods his friends have at school.
sweet Sammy boy knows you love him, Rachel. Gluten shouldn’t convey your love for him, but your snuggles and your effort to protect him from that “yucky gwooten”.
stay strong friend. love you!
that has got to be so hard for any mom who has a child with allergies… hard for the child to understand and hard for mommy to enforce 🙁
It might be hard to see now, but your son will grow up happy and healthy. Twenty years ago, I was in your shoes, worried that having celiac disease would make growing up very difficult for my toddler daughter. But today she is a confident, accomplished 21-year-old about to graduate from college. She has never let the diet stop her from doing anything. Based on our experience, I would say a positive approach to the diet and life, plus all the effort you are putting in now to keep your son safe, will guarantee that he will grow up as joy-filled and well fed as any other child. Also, there’s a big supportive gluten-free community now that will be a big help. Bottom line, gluten-free kids are strong, resourceful and do great things. I know this is what is ahead for your son. It might be hard today to watch him be sad or struggle because he can’t have something as simple as that bagel, but you will have so many moments of joy and pride when you see how resilient he is.
Tears! My heart breaks for him while it rejoices in how much he can eat and he can do.
Sometimes though, we have to mourn the losses, we have to weep, but praise God that He is always there to comfort us during those times…and once we’ve been comforted yet again (and again!), we can focus on all the blessings and maybe someday we won’t weep over the losses.
I hope at least.
Hugs and prayers coming your way…for you and your sweet adorable little guy!
What a sweet little face that is. He’s so lucky to have a momma like you to fight for him!
my heart always goes out to mom’s who have kids with food allergies.
i can relate. telling Hunter at birthday parties that he can’t have all the other things the kids are having is so sad for me, and him. i feel your pain.
This post almost has me in tears. I can’t imagine dealing with this. You are a good Mama! God has such a plan for that child! Better things than Gluten! 🙂
Blessings,
lana
You are an amazing Mom for not only “dealing” with this, but fighting for more awareness.
As old as my oldest is now, there are still those times we go places and he walks up to me with those big beautiful eyes and asks, “can I eat this stuff mom?”. He is deathly allergic to anything with nuts. This means, as far as sweets go mostly, if there isn’t a label to read, he can’t have it. Not worth the risk. And 9 out of 10 times the label tells us no go too. He hates it and I hate it for him, but I always do my best to prepare and work around those situations. It is easier as he gets older, but never “fair”.
What a terrific momma you are to fight for that sweet little boy!
You are a good mommy.
Who knows? Maybe by the time he’s a teenager there will be gluten free fast food places all over the place!
Know that I’m here praying!!!
Psalms 63:1-2 O God, thou art my God; early will I seek thee: my soul thirsteth for thee, my flesh longeth for thee in a dry and thirsty land, where no water is; To see thy power and thy glory, so as I have seen thee in the sanctuary.
You write so eloquently Rachel, its like we are there with you feeling all those things that you are feeling. Keep fighting, you are an incredibly strong woman and Samuel is so blessed to have you on the battlefront for him.
Life is TOUGH and hard, and so unfair. Have you ever read Is God To Blame? It’s by Greg Boyd, it’s an awesome book that has helped me with all the “why’s” and unfairness in life, I highly recommend it!
It’s hard when our lives have suffering but even harder when our kids suffer. XO
I love that face too Rachel! You and your sweet Samuel have been on my mind lately! We don’t battle with gluten in our direct household, but three of my nephews and sister in law are celiac’s and I see the internal struggles they all face with each bite during the day. I love that you are such a passionate and feirce advocate for Celiac’s Disease and for your son! What a wonderful blessing you are to your family and to all those who are walking with you! Thank you!
This is so heartbreaking. I didn’t find out about my Celiac until I was 20, and I don’t feel so bad for other adults who have to adjust their lifestyles, but it always pains me to see kids with Celiac Disease. Hopefully he’ll grow up more aware of what he puts in his body – and will be better off for it, right?