themighty logo

How My Son’s Life-Threatening Condition Made Me View Food Differently

IMG_3475-e1413307081225 Five years ago, I thought I was an expert about diets. A lifelong calorie counter, Weight Watchers attendee and portion controller, I figured I knew nearly everything there was to know about special ways of eating. Show me a food and I could tell you its nutritional information and three healthy ways to cook it.

The day we came to understand my son Zack’s diagnosis with a rare metabolic condition, I was humbled to the core. I walked into the clinic proudly boasting to the metabolic nutritionist that I knew about diets because I’d lost a lot of weight and understood these things. My face is turning red now at the memory. To her credit, she was gracious as she explained to me the concepts of this totally different way of managing food.

Zack, then 11 months old, was placed on a low protein diet where even the protein counts on food labels were too inaccurate to use. Every food was weighed to the gram and recorded. We ordered low protein foods from a medical supply company and learned to cook with low protein flours and starches. All meat, dairy, nuts and higher protein sources would be forever off the table for him. Regular flours in bread, rice and pasta were too high in protein, too. Fruits and vegetables were allowable in measured portions. (Yes, even broccoli and strawberries have some protein in them.) This diet seemed impossible to believe, yet here it was being handed to us.

I became a martyr about Zack’s diet. Sure, some people have to eat gluten-free. Maybe gluten-free and dairy-free and add allergies and sensitives too. To me that seemed like total freedom compared to what we were dealing with. Even a diabetic diet was freedom compared to this.

I mourned the loss of the life I thought Zack would have. I mourned the loss of freedom for our family. Random trips to the 31 flavors shop – gone. Swinging by a friend’s birthday party and gobbling up cupcakes— gone. Grabbing a snack on the way somewhere — gone. Life with food as we knew it — gone.

As with all situations where a family has no choice, we gradually made adaptations. During one of the many conversations I had with our ever-patient dietitian, when we were wrapping up the conversation she commented, “After all, it’s just food.”

“After all, it’s just food.”

I was taken aback. Whoa – just food?! How could this be possible? Since when in my life had food just been food? Since… never. And I was in danger of passing my same obsessions on to my son.

It was time for me to bring the obsession meter down about 10 notches. I discovered that when I stopped looking at the world through the lens of food-is-the-end-all-be-all-everything, suddenly it became a difficult but manageable life change.

Zack is, for the most part, happily content with his low protein diet. He’s now 6 years old and while he’s not always 100 percent on board with it, what 6-year-old boy is 100 percent pleased with any limits his parents set about anything? Most of the time, he’s perfectly fine eating what he eats. We strive to not make food a big deal. We have our kinds of food, and he has his kinds. He eats the fruit, vegetables and bread along with our family and then “his kind” of other foods, like low protein cheese and pizza. Thankfully as he’s grown, Zack’s diet has become somewhat less restrictive, which has helped. He gets a bit more protein, as adjusted for his body weight, so he’s now able to eat items made with regular flour, although he will never eat meat, dairy or other higher protein items. All in all, Zack’s a great kid with a weird diet.

I learned that food is just food. I was forced to learn this for the sake of my child. Perhaps I’m still learning it. At times I miss stopping by 31 flavors on a whim. But then I look at the face of my sweet boy and I think — you my child, are totally worth it. I wonder if God looks at me and says the same thing.

This post originally appeared on

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.