On being loud for Wes

Everything about this experience is new to me. I’ve never had serious health problems and haven’t had to deal with the health care system in any significant way in my life – even Wesley’s birth was largely under their radar, being born at home in a kiddie pool in the living room.

Almost immediately it became clear that Stephanie was going to focus herself fulltime on Wesley’s recovery, an arrangement we are entirely grateful to be able to swing. Even before he was ill it was simply more economic for her to stay home while I earn a living, not to mention being a vastly preferable arrangement on other grounds.

My role as breadwinner is straightforward, but I also want to be an active and engaged parent. My kid, that little creature who means more to me than I ever expected possible, is sick and needs me around in every way, and so does my wife. There are endless rounds of feeding, chores to be done, time to be spent, and still there’s the essential playtime, breakfasts, dinner, and bedtime. And, if we’re lucky, weekends without plans.

As the situation has evolved it’s become clear there’s another essential role no one tells you about: the advocate. Our healthcare system is setup almost as a competition – your tiny little sick kid needs people working on his behalf every day to secure all the essential, and peripheral, resources and attention that can be mustered because every little thing, every drug, every opening in a clinic schedule, every minute with a doctor is scarce and those who spend the time and energy to identify what’s possible and demand it for their kids are most likely to be seen and heard and, unfair though it is, treated for the best possible outcome.

When I started this blog I wasn’t really sure what it was for. It’s mildly therapeutic at times, but that’s not it, or enough. It’s not about me. What it’s about, as I’ve grown to recognize, is advocacy. It’s about telling Wesley’s story in a way that maybe, somehow, will benefit him in some way, because it’s not enough just to be sick and to go to a doctor in this world. He needs us making every call, finding every program, identifying every possible treatment and therapy, every bit of financial assistance, and waving a banner with his name on it at every chance, because no one else will with the same intensity or focus.

That’s not to say that the folks at CHOP aren’t advocating for us; in fact, they’ve blown us away with what they are willing to do, above and beyond administering medicine. But we’re in a fight for his life, so there’s no option to simply sit back and go along for the ride. In a world where orange juice brands regularly tweet and people follow their favorite banks on Facebook, where millions follow influencers to see what they eat and wear, for Wesley’s best chance, to discover every potential lifeline, alert every guardian angel, he has to become a brand as well, and for that he needs advocates priming a platform so that when we need it we’ve got an audience ready to hear our cries.

It might sound tacky and shameless and exploitative, but it’s none of those things to me. It’s about ensuring the best possible outcomes for a mortally ill child, in a world full of obstacles and confusion and inconsistent outcomes. I’m not a cancer researcher, a doctor or a nurse. When this is all over I’ve no doubt we’ll all devote much of our lives to advocating for others and to finding a cure, but for now it’s all about Wes.