Reflections

Today’s post is another one of those “had to post” thoughts I have from time to time. Very often as Max’s birthday approaches I start to reflect on so many things: how far we’ve come, how far we still have to go, the darkness of the past and the uncertainty of the future. But mostly I try to see the miracle we have been given. Don’t get me wrong it can all seem like a constant struggle because in a sense it is. We are trying to win a war one battle at a time!

Because of this never-ending effort I must admit it bothers me when people tell me “to take it one day at a time.” While that may seem the logical approach to any problem this tactic is a luxury we just don’t have. We can’t take it as it comes – if we don’t consider tomorrow we are not truly helping Max. It is our job as Max’s parents to look towards the future and prepare for it.

We have to know what the medical field is doing for kids like Max so we can make decisions based on fact not emotions. The more we know the more positive a medical outcome Max will have. Children like Max didn’t use to survive, they didn’t grow up. Even the medical world doesn’t really know how to keep up, most congenital heart defect adults are still seen by pediatric specialists because adult cardiologists have never dealt with an adult with a congenital defect – they’re used to adults whose lifestyle of poor eating, too little exercise, smoking and drinking have caused them to end up in a cardiologist’s office whereas our kids are just innocent victims of heart disease.

We also have to prepare for Max’s practical future, how will society treat Max? Will his peers at school make fun of him? Will he be left out of games and recess fun because he can’t keep up? Kids can be cruel, heck I know some adults who have been just as heartless when dealing with Max. As a society we really don’t embrace differences and that’s a huge problem on many levels (alas that’s a topic for another entry). As for now Max’s super ego shields him from all this. Perhaps he has cultivated a strong self-image as a response to how others perceive him, as if his strong faith in self protects him from other people’s insensitivity. But still we have to plan; we have to be sure Max has the tools he needs to succeed just like anyone else his age does. We’re turning the atypical into the typical, believe me this is no small feat!

So as another year in Max’s journey comes to a close and the promise of a new year looms on the horizon I realize that not much has changed, we are still the custodians of “Max’s miracle” and as such we know that Max will continue to amaze us in his ability to defy all the odds thrown at him. Sometimes I think I worry just because as an Italian mother that’s what I am programmed to do…..