Donovan was 5 years old when we went to the doctor for his routine kindergarten physical on a sunny October afternoon. Nothing was out of the ordinary, but little did I know that our lives would forever be different after that visit. The next day, our pediatrician called and indicated they needed another urine sample because they found protein in Donovan’s urine. She wasn’t concerned and indicated that can happen in active children towards the end of the day. I picked up a cup to collect a morning sample per her request and dropped it off the next day. I honestly didn’t expect to hear from them again.

But then, over the weekend, my kid who had never been sick, never even been on an antibiotic at all, was sick with symptoms that weren’t making sense to me. He kept telling me his stomach hurt, but he was playing and eating fine. He missed an entire week of school because he would throw up in the morning, but he’d be fine a few hours later. After a couple days, I called his doctor and asked for him to be seen. They diagnosed him as being constipated, but also indicated they found not only protein in his urine, but blood as well. Again, they wanted another sample. By this time his stomach was swollen, but I assumed it was just because of the constipation. A few days later, he woke up so swollen that I knew something was wrong. I called the doctor and they wanted to see us immediately. After a bunch of tests, they sent us home with a promise to call by the end of the day. When they called, I was broken. My son wasn’t supposed to be sick; this wasn’t something I could fix with a kiss and a bandage. But I dried my tears and put on my brave face, because I was not going to let this kid see my fear.

I explained to him about the sodium restrictions and what that meant. That it would be hard, but everyone in the house would follow the “Donovan Diet.” If he couldn’t eat it, the rest of us weren’t going to either. The next month, we started the first round of prednisone. It works in that it sends him into remission quickly, but he doesn’t stay there long once he tapers off. Now, a year later, what once used to be foreign to us is now our normal. We have been referred for a biopsy and are waiting for our appointment to get a second opinion. In the meantime, we are just doing what we do best — being a family.

My advice to other families going through this is to write everything down. I write everything down! I have a notebook just for Donovan to keep track of everything NS-related.