Errol has been given a lot of diagnoses; some good: good spine, good ears, sweet smile; but most bad: pulmonary atresia (serious heart defect), Rubinstein-Taybi Syndrome (many ailments, chief amongst them, a significant cognitive disability), hypotonia (low muscle tone-forgive these medical misspellings), Microcephaly (small headedness), undescended testes (ouch), cortical visual impairment (visual processing malfunction), malformed retina (eyeball problems), tortacolis (imbalance of muscles in the neck), hemangyoma (malformation of the cheek-he’s still cute as hell), and finally, bad feet (he wears little Nikes to sleep to straighten them out-it’s not so easy with the testes). I won’t try to pick the worst one (this isn’t a contest), and I’m sure he’d be glad to do without them all-but he’s got them.
So what do we do with all these diagnoses?
There are those that tell us we should be realistic and accept what he has.
Others tell us stories about the little girl who was told she’d never walk and then grew up to run marathons.
What kind of expectations should we have for our dear little Errol?
I haven’t answered that question yet, but I try to stay optimistic. Our hopes and view of him will shape who he is. Reality is shaped, to a large degree, by perception (there are still those pesky laws of physics).
I always hope for the best without harboring any outrageously foolish illusions.
Of course, it will become more complicated when Errol can talk and understand (we hope), and we have to help him navigate his limitations (we all have them, his bar is just a bit lower-we think). For now we stay hopeful. He keeps surprising us.
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