I’m the mom of a microcephalic kid. I am also a news junkie. That’s been a tough combination lately.
I adore Edmund, my kid with microcephaly. I shouldn’t need to say that. In general, moms loving their kids is a given.
I am all too aware, however, that people believe he’s an affliction who must be borne, rather than a source of joy and laughter and an occasional pain in the ass—just like my two typical kids.
The endless pounding of Zika stories, and the descriptions of the grim futures that await the families of microcephalic children, chip away at a façade I’ve built by surrounding myself with friends, family, and a community who value and love my son.
On a recent morning, I had the pleasure of reading this lede in The New York Times: “A baby with a shrunken, misshapen head is surely a heartbreaking sight.”
If you are a parent, I ask you to sit back and think about that for a second. Think about one of your kids being described in those terms in the paper of record. Terms that are usually used for the hulking villain of a gothic novel, not an infant. And further as “a heartbreaking sight.”
As it happens, I saw my kid this morning. He’s 6 years old, no longer a baby. When he caught my eye, he grinned at me and signed, as he does many mornings, “I love Mommy. Mommy loves me. I love hats.”
We’ve never been sure why he’s so fond of hats, but there it is.
Edmund may be many things, but here’s what he isn’t: a heartbreaking sight.
This isn’t because he is one of the 15 percent of microcephalic children who develop typically. His microcephaly is part of a cluster of medical problems that stem from a rare genetic syndrome, Cri du Chat syndrome.
He has multiple intensive needs. He’s non-verbal, and communicates with a few signs. He uses a wheelchair and requires a feeding tube for nutrition.
Rather, it’s because I love him for the person that he is, not the skill levels he achieves.