Errol is undiagnosed. He is no longer our son with Rubinstein-Taybi Syndrome (our apologies to those of you who were so lovely and generous to learn all about the syndrome we thought he had), now he is just Errol. His undiagnosis has erased a year of what we thought we knew about him. For four days now, we’ve been drifting away from knowing Errol through his ex- syndrome towards knowing Errol as he truly is. From prescription to description. All expectations are up in the air, and surprisingly (perhaps naively) we feel good about his RTS ceiling being lifted (although you never know what it will be replaced with). But who ever knows about anything, really?
This is one of my favorite A.R. Ammons poems
Anxiety
The sparrowhawk
flies hard to
stand in the
air: something
about direction
lets us loose
into ease and slow grace
You might think our direction is gone now that we don't know Errol's diagnosis, but instead we has been given direction as we dissolve into the grace of knowing Errol as he is now.
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