This post is a guest post from Cindy Frei, founder and creator of Caleb’s Cooking Company.
Caleb’s Cooking Company provides whole, healthy, healing food to children with chronic, autoimmune, and/or digestive diseases and is named for Cindy’s son Caleb who was diagnosed with Crohn’s Disease.
My motherly instinct to protect is fierce and a force to be reckoned with. When I became a mother, I somehow tapped into a psychic power to connect and understand the intricate details of my children and their wellbeing. Just like other mothers, I will do anything to protect or provide for my children, often against all odds.
Unfortunately, I wasn’t able to protect my son, when at the age of 10 years old he was diagnosed with Crohn’s disease. I was scared to death, but as his mother, felt I had to hide these feelings and remain strong and self-assured as to the path to pursue. Caleb followed my lead. He knew that he was going to be ok because I told him he was.
After Caleb’s Crohn’s diagnosis, my mama superpowers kicked in.
I put Caleb on an elimination diet called The Specific Carbohydrate Diet, which cuts out all grains, gluten, refined sugar, most dairy and preservatives from his diet. Needless to say, it was challenging for all of us, Caleb especially. This wasn’t just a diet, but a complete change of lifestyle. Fortunately, Caleb was on board and ready for the journey. Or at least he thought he was.
After just 4 weeks, all of the Caleb’s blood markers measuring inflammation had dropped to almost normal. Now, about a year and a half into the diet, Caleb continues to remain in remission, but socially and psychologically, the diet is taking its toll. Navigating a junk food filled world with weekly bake sales, birthday parties and sleepovers is socially and psychologically challenging.
Caleb often felt like an outcast.
He has to carry his food with him wherever he goes and just having his friends over for a sleepover can became awkward and uncomfortable.
I knew instinctually that I had to do something to help. After all, if Caleb was suffering like this, than that meant there were many other children on special diets who felt the same way.
Then, it came to me.
I would create a company to make healthy food that any child on a special diet could eat. It would all be grain, gluten, sugar, dairy and preservative free and would look, taste and be packaged just like “regular kids fast food”. I would call it Caleb’s Cooking Company.
Besides making food, I also hoped the company would empower Caleb to not only accept his illness, but help dissolve some of the shame he felt around his new diet. After all, he would be sharing his experiences via blogs and videos. In addition, one of the goals of the company was to create a space so that kids with IBD could get together and realize they weren’t alone in their disease or diet.
I created an exclusive club on the website just for kids with IBD and other autoimmune illnesses
I called it Caleb’s Club. It’s a place where kids can hang out, share funny images, music, videos and ideally share their experiences with IBD. This is Caleb’s “baby” and besides nudging him every now and again to stay involved (and monitoring content), I leave it to him to manage. I think it’s helpful for Caleb (as well as the rest of the kids) to not only see how many other children have IBD (and are on the SCD diet), but also to share similar experiences and feelings about it.
As a teenager, Caleb is embarrassed to be different from the rest of the kids, to have Crohn’s, be on a special diet and now be sharing his experiences with the world via YouTube and Facebook. I suppose I don’t blame him.
At 14 years old, Caleb’s social life has become the center of his being, and the last thing he wants is to stand out or be different from his friends. I am constantly trying to help balance making good decisions around his health and what’s best for him psychologically. After all, if his heart isn’t in the game, than there’s no chance of us winning long term.
Simple events that most would take for granted, like lunch at school, having a sleep over or eating dinner out, are far from simple when you have Crohn’s and are on a diet like the SCD. His feelings around these events are usually very different than mine, as his mother. This can often lead to conflict between us.
I am approaching the diet and his disease as his mother with the goal of keeping him healthy and safe.
I am trying to teach him how to care for his body now, at this young age, so that as he grows and matures, he knows how to differentiate healthy whole foods from otherwise. He also needs to learn how to cook for himself because he will be cooking most of his food going forward.
Caleb, on the other hand, is approaching the diet probably very differently. He wants to stay healthy, but generally he just wants to feel full, fit in with his friends and not have any of this be a big deal.
Luckily Caleb is a mature guy and doesn’t cheat (not that I know of), cooperates and wants to stay on the diet. If anything he appreciates how badly his stomach hurts when he eats foods that isn’t “SCD legal.” He still has shame, anger and fear that need to be sorted out. I can’t do this for him. As Caleb’s Cooking Company continues to grow, so does Caleb’s confidence, self assuredness and maturity.
Slowly but surely, I’m seeing a transformation in him. At first, he resisted opening up and sharing his experiences, but I have watched over time as he has become more confident in himself, the diet and the work he is doing. I look forward to further growth, both for Caleb’s Cooking Company, Caleb and all children who struggle with this very challenging disease.