Rowan jumping for joy before her first day of school.

Coming Home (to a House of Cards)

I opened this installation with a narrative and, given my investment in the ways social media promote, incite, encourage, and challenge subjective narrativity, and my attachment of Sullivan and Porter's feminist ethics, I feel compelled to close with another.

As I mention earlier, the uniqueness of my family's story led to its mass broadcast; we were featured in countless print, television, and Internet news stories and effectively achieved our 15 minutes of fame. Given this, it wasn't unusual for us to get phone calls from people all over the country. One phone call in particular struck me. A mother, likely in her late forties or early fifties from the sound of her voice, called to reassure us regarding our decision to enucleate. She wanted to let us know that Rowan could live to have a healthy, normal life. She had made the same decision over 20 years ago, and her daughter, now 25, had enjoyed a normal childhood. She was particularly proud that she was a soccer player.

I should break here for some context: As I mentioned earlier, the retinoblastoma community is not a homogenized collective. Like any group, its contours flow around its internal controversies. In retinoblastoma groups, one of the most intense controversies concerns how aggressively to fight to save an eye. Such a decision concerns a number of factors: the location of the tumor, whether the cancer has presented unilaterally or bilaterally, whether to use dangerous but often effective localized radiation treatments. Given the extent of Rowan's tumor, this really wasn't a question for Meg and I—we both immediately agreed that the eye had to go. Just hearing about different kinds of treatment can lead to passionate arguments or cause people to leave the group. No one is comfortable questioning their child's care. But many cases are not so clear. And many parents struggle with the body-issue decision to de-normalize their child.