The Long Game

For those of you who are like: “Where’s ‘Highlights From 2017: Part Two?‘” Don’t worry, Mrs. Holland’s Opus will continue soon-ish.

Thorin had ear surgery this morning.  It went well and the desired outcome is that his hearing in that ear will be improved from moderate loss to mild loss. It took a few weeks for Thorin to accept the idea. His bleak assessment of almost all medical procedures and illnesses since Bubba died has been a road-block in getting him to go to the doctor or having any procedure. If someone gets sick his response is usually, “They’re dying.”

In fact, he told me he would die if he had the surgery. I assured him, “Thorin that’s not how you will die. You’re going to be very old when that happens.”

“Sure, mom.”

Ward and I played up the benefits of his hearing getting better and his speech getting even better. I made a point of talking about other people’s surgeries and how well they went. I even played up Jane Fonda’s success with surgery.

“Thorin, she’s almost Bubba’s age and she has had surgeries! Look how healthy she is!,” I said dancing a copy of Vogue before his eyes.

I did not mention they were plastic surgeries. Why muddy the water?

And we also stayed out of his way. Fear is a personal experience and it’s important to be able to manage it. To know you have skills to manage your anxiety is powerful. Thorin did figure it out. He would agree to the surgery but he would not be happy about it. Fair enough.

I put out an ask on Facebook for encouragement. His best friend, Ella FaceTime’d (is that right?) to tell him: “You’re brave, Thorin!”

The staff at the hospital where the surgery took place was excellent, compassionate and responsive. Thorin’s ENT and surgeon even told him this morning, “Call me, Kevin!” So we did!

The anaesthesiologist was superb. He let Thorin call all the shots. He told Thorin: “Nothing’s going to happen that you don’t know about, Bub.”

I went in with Thorin to be put under. For the first time he fought. He’s not our little, unsuspecting boy. He’s now 11 years-old. He’s since forgiven me –my complicity.  And–we didn’t have to buy a pony, just dessert.

Thorin came out of surgery upset. That is to be expected. We– Ward, me and staff– were focused on him coming back and getting home. Thorin had been through the worst of his fear– DEATH.

One person was not on-board with the carefully laid plan of humans working together to help someone. Earlier, I had spied a woman– a health care professional who was there throughout the mornings events–who, strangely, was the only staff person not to engage with Thorin in some way. He was the only child in the surgical area. That tends to bring attention.

After an hour or so waiting for Thorin to rally I heard her voice. Her rather loud voice at that moment: “…he’s so retarded!” This was followed by too loud laughing.

My head snapped around. I looked at her hard. I caught her profile. Did she see me– or him? I looked back at Thorin and Ward — it was clear they had not heard. They were behind me in the little surgical bay talking. Thorin also had batting in one ear.

I noticed almost immediately that no one else laughed– not other patients, family members or staff. That means a lot. I remember when most people laughed. I remember laughing.

I pulled Ward aside and told him what I heard. Who it was? He figured that out before I told him.

I have lived, written and performed this statement: These were not on our list of parental concerns– before we became parents to Thorin. We had regular parent worries. We hadn’t planned on schooling a world, too.

So, Thorin didn’t hear that word today but he has heard it– once even in reference to him.

We all need to keep moving the line forward. Okay– so, now not everyone laughs, maybe. How about this? When someone says it you say: “Not on my watch!”  Or “That’s f’ing Al Franken of you!” I have never liked him. “Women aren’t as funny as men? Mr. Funnyman, Puke-face.”

Back to the present. When I emailed the patient advocate at the hospital hours ago I shared many things including this:

I would however very much like to talk to you. I’m assuming your facility has a code of conduct that is respectful to all people. ‘Retarded’ is an ugly and hurtful word. It is shocking in this day and age a health care professional is not educated to the fact the word retarded is archaic, offensive and just plain wrong.

Our son has Down syndrome. I’m relieved on top of surgery he didn’t have to also hear her nasty comment or laughing.

Had our son not been present I would still be upset. The same way I would be to a racial, ethnic, sexist, homophobia…etc remark.

I look forward to speaking with you. If you are open I have some ideas on how to help you work on a resolution that educates.

I got the best email response back: I’m sorry. When can we talk?” We talked. She said something pretty close to this: “I’m glad no staff supported her but I wish someone had said something.”

“Me, too.” Yes– that was deliberate.

As Thorin’s stand-in advocate– I don’t expect perfection. I expect intention. I will accept: I am willing to work to do it differently. That’s my expectation for me.

She was also relieved that this person wasn’t referring to Thorin directly. I told her, “No it didn’t seem so.” But I couldn’t share my hunch. The one Ward had on who it was.

I ask them to consider my assistance toward making a more accepting and tolerant community. This is me moving the line forward from writing about it to educating about IT out THERE.  Being scared is not a reason not to do something. I told Thorin that, too.

*More on performance storytelling in the highlight’s of 2017 I keep threatening to publish.