I have become one of the many sad-eyed parents walking the halls of this hospital. You know us by the Parent/Guardian sticker that grants us access to the places where our children rest in their hospital beds. We all look so much alike–sort of vacant, still, attempting to take up much less space than we do.
I’m finding myself looking longingly at healthy children, smiling sadly at pregnant women, giving looks of tragic solidarity to the other parents wearing the sticker.
I never imagined I would become a member of this club, this exclusive club of parents of children with cancer, this club to which no one wants a membership. None of us really even knows how to talk to one another, or so it seems thus far. I know that will change, that maybe with time, we’ll strike up conversations. I can’t help but find myself wondering, though, why my kid couldn’t have the same leukemia these other ones do, why he had to get the aggressive, super rare version that leaves his doctors just a little more solemn, that has us imagining a bit more of a nightmare in the coming months.
There’s a look people give me now. I think it’s an attempt to reflect my sadness, an attempt at sympathy. I appreciate the effort behind it. I do. But it makes me feel so hollow, so cold.
Today we learned from our head research doctor that he found the very mutation in our son’s DNA that is the marker for JMML. The diagnosis is unquestionable. As hard and stark as that is to hear, we know now why we’re doing what we’re doing. So we hold our breath as we search for a donor and just keep putting our hope in this boy who is our everything.