"How’s Max?"

This is a question that isn’t easy to answer and sometimes isn’t easy to ask….although I’ve sort of always known this it became crystal clear to me recently when a new acquaintance, after hearing Max’s history, asked me how Max was now. When she asked me “How’s Max?” I realized that I hadn’t answered this question (at least out loud to another person) in a very long time.

During the last eight years we have come to understand and accept that Max’s “journey” is not to be a short one with a fixed, tangible end that can be measured in a “cure”. When a child has more than one congenital defect, a.k.a. some syndrome of unknown origin, it cannot reasonably be expected that one day we will awaken to find that a cure has been discovered for all of Max’s puzzle pieces. We accept this, it is what it is, but this doesn’t mean that we are not frustrated or saddened by the fact that our son will never really know a life without medical interventions of some type.


Our road is long and winding and will continue for years to come. This journey without end is our way of life. Yes, we get long periods of mere “maintenance” of symptoms when nothing really acute happens, and for these periods we are incredibly thankful. But we have also come to understand that these peaceful moments can blow up in our face at any given moment. Again although frustrated and sad, we accept this as our reality.


However, this is our reality and we cannot expect that others can fully grasp this way of life. For some, after eight years Max’s story is “old” and they really don’t know what to do with it anymore. Many friends, and even family members, no longer inquire about Max and his health. Perhaps they feel that if there was anything important to share we would offer the information up without be asked. Or perhaps they just don’t know how to handle our reality, most have healthy, typical children and they don’t want it to seem like they are setting Max apart with some form of pity. Or perhaps they’re just tired of trying to keep up with the chaos in our lives.

I don’t want to imply for one moment that no one cares about Max or us, it is abundantly clear that this is not the case. It’s just that we realize that it is often difficult for others to feel comfortable relating with the family of a chronically ill child. Heck, I’m certain that eight years ago I was one of those people, complaining about mundane childhood illnesses like ear infections, fevers, rashes and the like without realizing how profoundly lucky we were to have a healthy child.

I guess what I’m really trying to say, perhaps not very eloquently, is that although we may be frustrated or sad because of the hand Max has been dealt we’re at peace with it. Mostly because Max is at peace with it, he doesn’t complain or even give much thought to his many medical conditions. In his mind he is no different than anyone else, maybe better, but certainly not different :)! And because we’re OK with the whole thing we’re OK with people asking or not asking about Max. Either way we know you care about him (and us) so asking “How’s Max?” is nice but not always necessary.