It was about three in the afternoon and Samuel was sitting on my lap. We were reading – the Richard Scarry book Things that Go. Page after page we read, searching for the elusive goldbug in the process, laughing at the silly antics of the Pig family. And then, we get to the page where the Pig family visits the farm.
At Grandma Pig’s farm, all the farmhands are very busy. They are picking corn, gathering hay, and delivering milk. They are harvesting wheat to be made into bread.
I pause. Just for a moment, glance at Samuel, and then keep reading.
Grandpa is cutting the grass and Grandma is clanking…
That’s gluten, Momma.
It was Samuel pointing at the picture of the red grain harvester harvesting wheat.
That’s gluten. Yucky. Gluten hurts my tummy.
And sigh. Like a knife in my mother’s heart he utters the words that two years ago I never would have thought twice about. I could have avoided reading those lines about harvesting wheat to make bread or I could have changed them that it was going to be gluten free bread. But, I knew I couldn’t. I knew that I needed to read it word for word because despite how easy I make Samuel’s life there is no hiding that he is forced to live gluten free in a very gluten full world. And that? That stings. Deep.
Especially now. Now, during Christmastime with the abundance of pastries, cookies, pies, and treats. And I know that most of them Samuel can never ever not even a tiny bit of cheating ever have to eat. And, honestly, my friends? I hate that reality for him. I know, I know, it could be worse. But, it’s still not a fair reality for him. No matter what. This world? It’s not perfect.
Yes, Samuel, that’s gluten.
Me gluten free. Read momma.
And that’s it. For me it’s a pondering moment about life, and for him it’s just an acknowledgement of the fact that there is gluten on the page and that he can’t have it. I know I’ve said it before, but the boy teaches me so much about contentment in life. Again – he focuses on everything he can have and refuses to dwell on what he cannot.
For me to learn from him. For such a time as this.
So we sat there and read. Me with tears brimming my eyes – tears of gratitude for his health and still tears of sadness for all I know he can never have – and him, content to sit in my lap on a Wednesday afternoon and to read.
Celiac Disease is hard. Plain and simple it’s hard. I look at labels constantly. I call companies. I watch and watch and watch. But, he is healthy. He is thriving. And he is content.
I am constantly learning from him. He goes to bed at night grateful for all he can have and never complains to me about the many things he cannot eat. He’s grateful for the good.
I not eat gluten, Momma.
And he is content.
And I am humbled. Again.
To read a bit more of Samuel’s story read this post: One Year: The Celiac Disease Fight.
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Your post brought tears to my eyes. While my children don’t have celiac disease, I can very much relate to it. But like you, their pure joy of life eases my worries that while I can’t fix certain parts of their lives for them, they are strong human beings that live in the moment , and that is more than enough to make them happy.
Thank you for writing this. In this season of excess and commercialism, it’s easy to get swept away in wants and desires. When you step back and look at the Blessings in our life that we DO have, it makes all of the other things seem so superficial. My 3 YO daughter is gluten intolerant for sure, but has not be tested for Celiac yet. We’ve been GF for 2 years now. She is very much like your son. She doesn’t want for want she cannot have. Rather, she is grateful for what she can have. She is content, thriving and full of life. My daughter is my teacher. Your blog brought tears to my eyes, because I have the exact same pain and humbleness. Keep up the good work!!
I very much relate to your post. I wish I could just give your Samuel one great big hug! What a trooper and what an example of humility and grace.
Thanks for sharing. A friend shared yesterday’s post about the tree. . .and I’m glad I had the blessing of reading this one as well.
Our 8 year-old has a similar outlook. Such a blessing!
wendy (in Arkansas)
Bless his sweet little heart! You are such a good mama, Rachel. As you know, my baby boy is gluten free (and dairy free, and soy free, and nut free) and it is hard. We have to be so intentional about everything as we don’t want them to feel as if they are too “different” or that we favor another because they are not harmed by these things. My heart does hurt for your baby boy and you. Continued prayers for you, my friend, and that beautiful baby boy!!
Thanks for you post. My children don’t have celiac disease or food allergies, but my son’s best friend has a very serious peanut (all nuts) allergy. My son is very concerned that we make sure his friend can always enjoy things at parties and playdates. I think I may understand where his mom is coming from a little better now… thanks!
I’m so glad you figured out what was wrong with sweet samuel. my cecilia has a BUNCH of pretty bad food allergies..i know it’s not the same…but i also share the heartbreak with you…trying so carefully to be sure she misses out on nothing…it’s such a careful dance!
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I can’t imagine how hard it must be for him…and for you as his mom. What a sweet boy you have there. I love how children look at things so simply…
Samuel has an interesting bed…oh what a precious little man!
Praying right now!
Isaiah 41:10, 13 Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. (13) For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee.
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I love your blog! You inspire me as a mom, wife and advocate for your children. My son has a hard time eating gluten as well. It affects his behavior more than physically, but we have found the less gluten he eats the better he can focus and the happier he is. Not sure if you have heard of this little Canadian company, but we have this in our Stonyfield yogurt almost every breakfast. It is called “Holy Crap” http://holycrap.ca/ Funny name, but it is a truly amazing cereal. They are just breaking in to the US market, but you can order it online. Thanks for inspiring!!
What an amazing boy you have! I love he focuses on the things that he has.
Let’s focus on reminding our kids on the GREAT foods we can eat! My son and I are both celiacs, and he chooses to stay away those foods that cause a reaction: that is, anything that contains gluten. As celiacs, most of our choices are natural and healthy foods. There are lots of gluten and gluten free junk foods out there. We need to stay away from any junk and just keep the healthy natural foods going into our mouths and bodies. Its a gift!
What a great post! Celiac Disease is very hard, for an adult, I can only imagine for a child. It looks like you are doing a fantastic job, Rachel!
Thank you, Mary. 🙂