Reality

With baseball season in full swing (no pun intended) Max has been all-consumed with going to as many games as possible, watching the ones he can’t get to on TV, and making us play mini-games in the backyard (as the temps here have hovered around 105 and up this has not been the highlight of our day) so that he can practice both infield and outfield catching as well as perfect his stolen base slide. Because of all this Max has started to question our logic on why being a coach is so much better than being a player. Obviously Michele and I have always pushed “the coach” thing because we know that there’s no way Max will ever be able to play any sport competitively. Unfortunately, as he sees his sister prepare for her second year of swim team, as he sees other children at the Park practicing various sports, he is starting to accept the reality of his situation – he will never be what he so desperately wants to be --- a famous baseball player. He gets angry at us for saying that being a coach is so much more important than being a star player, he know we’re lying to protect his feelings and at nine it just doesn’t fly like it did when he was five or six years old.

For a chronically ill child life is all about coming to terms with reality, in most cases this comes little by little as they discover the limits their bodies impose on them. This gets more and more difficult as they get older because there is so much more they can’t do: sports, sleepovers or going to grandma’s house because there are way too many meds that you need to take, many amusement rides are off limits, and the list grows. Most of these limits Max has come to accept easily and he copes by minimizing his desire to do them: he doesn’t want to sleep anywhere other than in his own room (or my bed but that’s a different story), he wouldn’t want to go too far away without us because he knows he’d get homesick, he’s not interested in roller coasters because they are way too scary…..he minimizes all of them except the inability to play sports like he wants to.

As his parents we are so proud of how he copes with, and even thrives in, his reality but at the same time it is heartbreaking to watch him come to terms with it all. When he was a baby he didn’t realize that not walking until 20 months, eating through a tube in your belly, and taking a dozen or so meds is not the norm. He didn’t realize that his reality was different, because we didn’t let him see this but now as he grows and matures there’s really no hiding the fact that he’s different from his peers. So as his parents we are dealing with our own new reality of helping Max understand that he is not defined by what he can’t do but rather what he can do because he excels at all of it.