My two and a half year-old “baby” doesn’t eat, at least not enough.
My son’s doctors diagnosed him with failure to thrive as an infant and since then with reflux, eosinophilic esophagitis, and now celiac. I grew up next to a family whose son was a failure to thrive baby. His name was Johnny and he died when he was six years old.
I almost daily sort the differences between Johnny’s situation and ours. I convince myself that medical technology is more advanced, that my son’s more recent diagnosis has to be the answer and “final” solution. But, sometimes, as I lie on the plateau of wakefulness before diving into sleep, I agonize that Johnny’s mom never knew why he wouldn’t eat, why he died. I torture myself with empathy for her failure, her sadness, her ineptness. And most of all, I hope that her fate is not mine.
I will never forget the day that my pediatrician told me my youngest was failing. I carried him out of the room in tears, wanting to protect his tiny frame, knowing that the diagnosis was a catch-all for any number of life-altering conditions. I looked at my husband in desparation. And now, two years later we’re still running on the same treadmill of doctor’s appointments and forced feedings, desperately trying to turn him around in his car seat, and now trying to beef up his 22 pound body.
Johnny’s family fades in and out of my consciousness as we move forward with life after chronic illness. Sometimes I think of Johnny’s mother patiently trying to get him to drink a bottle for hours on end. Sometimes I think of the physical loss they must have felt, and more hauntingly, of the emotional one. I try to turn those scary thoughts into the positive things that I KNOW about my son and his future. But it’s hard when every morning, noon, and eve I fight to get him to eat. I find answers. I find doctors. I find more problems. And although I have hope for my son’s continued growth, Johnny’s ghost is ever-present at our dinner table.
My mom only uses one expression to describe Johnny: bird-like. I often check my son for resemblance to that description. And you know what? Maybe bird-like isn’t so bad after all. Because if we lose our struggle, at least he can fly.