Wednesday, January 19, 2011

Joshua's Syndrome

It is now time to move from testing to trusting.

After all of the specialists and blood draws,
brain scans and EKGs, ABRs and a long
day spent with a facial cranial team, made up
of two ENTs, one focusing on ears and the
other on the throat, a pediatric dentist
and pediatric orthodontist, a speech therapist
and the seventh audiologist we've seen,
a pleasingly kind nurse practitioner and a
very quiet geneticist, oh and one other
random medical person in the room,
purpose unknown; yes, after all of that,
the lead ENT, seeming to focus on the throat
side of the ENT equation, asks us to remind
him again of our son's name.

"Well then," he says, "it appears your son has
Joshua's Syndrome."

After some thought, I've decided this syndrome
is characterized by a Hard of Hearing toddler who
is also kind of hard headed and often refuses to
keep his hearing aids on; a toddler who has some
nerve damage that causes the appearance of an off
-centered bite; a toddler who doesn't really want to
eat anything that isn't crunchy, unless it can be sucked
through a straw; a toddler who is still very fond of
nursing and likes to hook his pointer finger through
his mother's belly button while dining in this manner,
sometimes he just likes to squeeze her mid-belly fat roll,
reminding her that she should be at the gym exercising,
a toddler who doesn't seem to need much sleep; a tow-
headed boy who loves books, loves people, loves animals,
prefers ASL over spoken language, and who somehow
manages to tell us exactly what he wants through his
twenty-five signs and ample use of pointing and gesturing.

Joshua's Syndrome is about seeing the whole boy, not just
the parts that might be missing, just as my God is the one
who ordains all of nature; the God of the whole show, not
just the God of the gaps in present knowledge. Joshua's
Syndrome is about trusting what is in front of us,
instead of living in fear of what isn't. It's about finally letting
out the breath we've been holding onto so tightly and
beginning to live in joy with and for Joshua.

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