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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