Sometimes, I want to stop and tell all the mothers out there who have healthy children how blessed they are. Sometimes, I want to go to them one by one and punch them each in the face. Then my son is admitted to the children’s hospital and I see how much worse it could be, and I kind of want to invite all the sick kids’ mothers to come around and punch me. Not that I’m a huge advocate of violence, but I really think it would make them feel better.
My son’s life has been a roller coaster ride, and he’s not even two years old. Not only was he blessed with an impatient and emotionally immature mother, but he was born with an ectopic posterior pituitary gland, which means the lobes of his pituitary (a very important gland, if you don’t know, responsible for the production of cortisol and growth hormones) are separate, instead of cozied up to each other as they should be. This has caused blood sugar problems, which went undiagnosed for a long time because he also has (or is thought to have–it’s no longer clear if the seizures have to do with blood sugar or are unrelated) epilepsy, and the low blood sugar symptoms were attributed to that. So far, the reason for his sugar issues are not 100% clear; he’s going to have a test tomorrow to determine if he has a growth hormone deficiency, which would explain it. If he does, we’ll have to start nightly hormone injections and he should start to get better. If not, we’ll have to see a metabolic specialist and the mystery will continue. He’s currently on anti-seizure medication and we’ve been checking his blood sugar each morning. Due to some low numbers, we’ve also added a nighttime feeding to his schedule and another blood sugar check. If his numbers continue be low or he has more alarming symptoms, then we’ll take him back to the hospital because it won’t be safe for him to stay at home.
Right now, Sam is in the process of bringing me his shoes because he wants to go outside. His development is a little behind–at sixteen months, he doesn’t say much and he’s not yet walking–but he tends to make his needs and desires fairly clear. This is one of the most heartbreaking things for us about his diagnosis: he couldn’t tell us what was happening, but we should have known. The doctors should have known. He had a blood sugar incident at three days old and was hospitalized, but he was so tiny then and not nursing well and no one thought it was symptomatic of something greater. When we brought up blood sugar with doctors at later appointments, we were brushed off because it was so unlikely. At our last appointment with the pediatrician, we decided that in Sam’s case, we ought to expect the unlikely. When we hear hoof beats, we’ll look for zebras as well as horses.
So here’s why I’m writing this post: I need you. I need your thoughts, hopes, prayers, good vibrations. I need your support. (No, I don’t mean financially–we hit Sam’s yearly insurance maximum a while ago now and everything else he needs for the rest of the year is free.) I’m standing on a street corner and this is my cardboard sign. Even a smile helps.