When Max was 4, one of Jason’s closest childhood friend’s son, who is just a little older than Max, was diagnosed with diabetes. It was Christmastime 2006 and Max was having his own medical crisis. It was the crisis that would eventually lead to surgeons placing a shunt, but at the time we were still hopeful it would be able to be resolved with medication and careful monitoring. Anyway, after getting off the phone with the friend, Jason told me how much he felt for them. I nodded somewhat sagely and probably with an inappropriate hint of smugness said “me too but they will adjust.” He said words to the effect of at least we aren’t dealing with something like that, something that chronic. Once I picked my jaw off the floor, I replied “Umm really? Yes that is good. That we don’t have to deal with anything chronic like that.”
I remember my response because that was the year my New Year’s resolution was to give up sarcasm, and I remember I just couldn’t help myself (although looking back at it now I think it underscored why I was right to try to give up sarcasm that year). Incredulously, Jason, who was to be fair probably pretty tired at that point, still didn’t get it. So I pushed the point. “We don’t have to deal with anything chronic and food-related like that. Huh? Did you want to do the shopping at the grocery store this week? You wouldn’t want to read the labels on the food because, you know, we don’t deal with something chronic like that.”
To be sure, I’m not making light of diabetes. It’s a serious disease. Dealing with insulin injections and monitoring blood sugar requires major lifestyle changes. There are very definitely life threatening consequences to getting it wrong, but hello the same is true of food allergies. I know it’s wrong to compare diseases. It does no good to try to sort out who has it worse. To an extent, I actually got where Jason was coming from. We were in the midst of dealing with this other health crisis, and we’d been at the-coping-with-the-food-allergies thing so long that he’d sort of internalized it. At the risk of sounding like even more of a jerk than I already do from the previous example, I think I’m going to take some of the credit here too. Since I did the vast majority of shopping and cooking and the preschool teacher snack negotiating, the day-to-day burden of coping with the food allergies at that point was more on me as well. It certainly hadn’t slipped my mind like it had his. I immediately saw some parallels between the two boys’ situations. I also immediately felt a little stung by Jason’s reaction or non-reaction.
It is funny (odd not ha ha) how when your child has a serious medical condition you almost are never jealous of healthy kids, but I can remember several times of being jealous of kids with other conditions. It’s hard not to compare. For some reason, people take a diagnosis of juvenile diabetes a lot more seriously than they do food allergies even life threatening ones. In the hospital, Jason’s friend’s child got the assistance of a whole team of diabetes specialists. They made sure he and his parents had specific training before they let them leave the hospital. That’s perfectly appropriate, and I am glad for them. It was hard not to compare. Max’s doctor handed us a fact sheet, a script for an epi-pen and advised us to get some cook books when he was diagnosed. At subsequent visit, pediatricians would sometimes ask if he was getting enough calcium. Sometimes.
In sum, I know it is insane to be jealous of a kid with diabetes, yet I totally briefly was. I have had the same feelings when I’ve seen kids with select other chronic neurological conditions. There are clinics to help kids with epilepsy. They bring together all the doctors and they have one set of appointments. They often have a nurse case manager who you can call and get help with questions and services. Heck, they have an exam room in the pediatric neurosciences clinic covered with framed informative posters and racks of brochures. I know because Max always ends up in that room when he sees the neurologist. It’s room 13. By comparison, when the pediatric neurosurgeon diagnosed Max’s sinus thrombosis and raised intracranial pressure, he said he had seen five cases like it in his career. He was not a young guy. Then he added that even those cases weren’t really like Max’s. He wasn’t sure how it would play out. Then he and the neurologist spent another day or two arguing about what to call Max’s condition (which is still an issue that comes up) and how to treat it before another neurosurgeon with more experience with Max’s issue came back from out of town and weighed in.
It has always felt as if we had to patch together a medical team. I remember the eye doctor who was following Max closely in this period between the first diagnosis and the shunt being placed two months later asking me if I would tell the neurosurgeon his rather gloomy report for that week. He threw in that he trusted me to do it as if this were a big compliment. I politely declined and explained I’d prefer they communicate directly lest I get some important detail wrong. He said he understood and asked the nurse to get him the number. She asked where was she supposed to find it. He suggested the phone book. Sigh! At least I wasn’t the only one with a sarcasm issue. Clearly this teamwork thing was new between these two doctors anyway. In that moment, I was jealous of families of patients who had protocols and established teams.
Yet, I know we’re not alone in this jealousy. I have a friend whose child has now been diagnosed with mitochondrial disease. It’s just about as terrible a disease as you can ever imagine: progressive and degenerative, it often causes excruciating pain. It affects all the systems in your body and for that reason it can be tough to diagnose. Occasionally during the years, when she and her husband were struggling with what seemed like a number of varied yet serious individual issues, she mentioned she was jealous of other kids with more solid diagnoses. She didn’t mention being jealous of the healthy kids. I don’t know why we do that? If you asked a grief expert, it’s maybe part of the bargaining process. We’re willing to accept that something has to be wrong with our child because we see the symptoms, but we want it to be something we perceive as somehow more manageable. In her case, that makes perfect sense. In my case, it still doesn’t, but I was.