How Managing My Daughter’s Rare Disease Has Changed My Persective

“He hates us and has reported half the office to Human Resources,” one of my two bosses vented during our initial meeting.

By the time I arrived at the company in late November, my bosses were exasperated with Jason’s antics.  He was notorious for walking off the job when flustered and having heated arguments with staffers, so, my guess, they were trying to thwart a lawsuit.

“We’re giving him to you to manage until we find another place for him,” they announced apologetically.

He sounded like a loose cannon, so why wasn’t I afraid?

The upside, for lack of a better word, of being a single mom a child with a rare medical condition, is that it provides a new perspective on life.  From my perch in the special needs trenches, I’ve had to fend off an avalanche of emotional, financial and health crises. Jason, to me, was a knock off of so many gay men I know in New York.  Smart, good-looking and worldly.  Someone you could discuss both fashion and work with equal ease, but just don’t cross.  Compared to my 10-year-walk through medical and personal hell, how hard could it be to manage his diva-like behavior?

Rather than take Jason head-on, I approached him as a therapist would, oozing empathy and compassion. When he would refuse to edit a document or would argue with an account manager, instead of screaming “You got to be kidding me!,” my standard line when battling with insurance reps, I’d bite my tongue.  I listen and agree.  “I understand completely, but realize…” I say.

Somehow it worked.

“You have a ‘calming influence’ on Jason,” my boss said at our meeting last Friday.

I nodded.

(Too bad I can’t have the same effect on my alcoholic ex.  Maybe he wouldn’t have sent that text accusing me of not dressing our daughter properly.)

“It’s a shame you weren’t managing him from the beginning.”

(No, what’s a shame is the specialty pharmacy screwing up and insisting I didn’t have insurance and denying my daughter her meds.)

“We found him another spot on the fourth floor.”

Problem solved.

If only managing my daughter’s issues were so simple.

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