When I began as a contributor to the HealthCentral Network, our son with acid reflux disease was only three years old. In those days, we suspected his reflux was bothering him when he woke up multiple times during the night, or refused to eat the things he usually enjoyed, or just behaved so badly that my husband and I wondered if our family could survive much more.
But this week, our family reached a milestone that I needed to share with all of you - it was a moment that made us sad and glad all at the same time. Our now six year old son was able to use his own words to describe his condition, and tell us exactly what he thought he needed to make things better. It happened at lunch time at his new school.
For the past several weeks, my husband and I had noticed that our son was hardly eating any of the lunch we sent with him at school. We guessed that maybe all the new lunch time distractions were keeping him from eating. Or we figured that he was embarrassed by the lack of fun stuff in his lunch compared to everyone else. Or maybe he was tired of the same old food to eat. We tried experimenting by putting his favorite, fun things like cupcakes and cookies in his lunch box. Still, no luck at lunch. Our next move was to visit the lunch room and see what we might be able to figure out from just observing.
On the day I visited, my son opened up his lunchbox, and hardly even nibbled on a homemade cupcake. With no obvious reason for not eating, I began to feel a little desperate. So I started firing off questions and suggestions to him... "Maybe we could send a little bottle of water, instead of your rice milk tomorrow?" "Or, maybe if you started eating your lunch, you could buy something off the snack cart?" (I happened to notice they had potato chips he could eat). It must have been at that point that he couldn't stand it any more that I was so far off from the real problem, because he looked at me and said, "Mom, I have reflux. If I eat my lunch, it goes up and down, and then finally feels stuck right here (he pointed just under his throat)." Before I could react to this explanation, they announced that all first graders should be packing up to go out to recess. Then my son looked at me and continued. "And going out and running around right after this, it can be a big problem. Bad things could happen." He then pointed once more to his esophagus. And then he concluded, "Mom, I need my reflux medicine now, at lunch." I looked at him and said, "I'll drive home and get it, and be right back."
On that drive home, I thought about how far we had all come with this disease. I thought about him crying and screaming through the night as an infant, and his father and I begging the doctors for medicine to help him manage the pain. I thought about how hard we had to advocate for him in those early days. And then I realized, that as a result of our efforts, our son was now in a position to advocate for himself by calmly using his own words.