Fins and Gills. I mean it.

We had made it almost ten years without Benjamin needing anesthesia for anything at all. 2013 was a year that scarred us more than a little because of the multiple surgeries he required but honestly he had already had more than I can count before that year happened. 

Regardless it had been ten years. Ten wonderful, glorious, no-need-to-panic-fret-and-bake-all-the-cookies years. 

And really, today was not a huge deal. He needed an endoscopy and that required him to be sedated. No big deal really. 

Except that in the ten years since his last surgery, Benjamin has aged ten years (funny how time works like that) and so went in to this procedure as an adult. At an adult hospital. Always he had been at children's hospitals. Always. But not today.

We rolled in several minutes ahead of schedule (That is not relevant to the story but by golly I needed it documented somewhere that we were E.A.R.L.Y.) After waiting for a while, the admissions desk clerk asked me for his name and birthday. Let me say that one more time: She finally came to her desk where we had been waiting for almost ten minutes, and then proceeded to look at me and ask "What is his name and birthday?"

I turned and looked at Benjamin without opening my mouth. He replied to her and to her credit she asked him the rest of the questions.

Benjamin had been worrying about this appointment for days. He had some specific requests and I was so proud that he verbalized them all. "Please make a note on my chart that I want my mother to go back to pre-op to help me." She said she would. "Also, please note that I want her brought back to be in recovery when I wake up." She agreed to note it.

I thought Benjamin just needed my emotional support. I assumed the staff would be able to meet his basic needs in this adult hospital where healthcare professionals care for patients all day every day.

But Benjamin knew. I don't know how he knew but he knew. He insisted I be present because they wouldn't know how to help him. They wouldn't know what to do for him. I am not sure those professionals could have known less if he had swam in asking them to care for his fins and gills.

I got him undressed and in his gown and on to the bed.

Nurse: "Sir could you sit up for me?"

Benjamin: "No. I can not."

Me: "I can hold him up, would that help?"

Nurse: "Uh yeah."

To her credit, the anesthesiologist came in and met him and determined to do his IV herself certain that it would be tricky to get a vein. But then she blew my warm feelings:

"Can you straighten your arm more?"

Benjamin: "No. I can not."

Me: "Can I help you?"

Nurse: "In the procedure room you will have to roll onto your side. Ok?"

Benjamin: "No. I can't roll myself onto my side."

Nurse: Blank stare.

And on and on and on it went. Are you paralyzed? No, I have Cerebral Palsy. Can you move your feet? A bit, see.

The recovery nurse was perhaps the most condescending of them all. I kept hoping his tone was just insulting my ears, that Benjamin was still feeling relaxed enough not to notice. But of course, he noticed. It was bad.

He started by reading the findings of the endoscopy. I wish I could explain his tone of frivolity. That was bad enough but then he turned to Benjamin and suggested that he eat small meals to help with his reflux. Benjamin assured him that he has been doing that for two years. Don't eat close to bedtime. Don't lay flat at night. Don't.....

All things Benjamin has tried in the hopes that he could find a way to manage something that has forced him here, today, in an endoscopy suite recovering from something he has avoided as long as he can, dreaded since the day it was scheduled.

And maybe reading that paragraph, you are thinking I am over-reacting, he was probably just doing his job. And to that I would kindly ask you to re-read the suggestions but in a voice as if you are speaking to a toddler. A disobedient toddler.

Understand now?

Benjamin needed to sign the release form. I placed the pen in his hand and positioned the clipboard for him to sign. He was still a bit relaxed, struggling to hold the pen in a firm grasp but he had it. As Benjamin does -- and many people with CP do -- when he is working hard to complete a task, he looked up at the ceiling, a spastic involuntary muscle reaction.

Recovery nurse: "Hey, you need to look where you are signing."

He doesn't, he trusts I have the paper positioned correctly. He can't. His body does what it wants to do.

Oh I am not really angry at this team of healthcare workers. I would invite most of them over for coffee as a matter of fact. I think they were doing what they could with the knowledge they have been given. 

Rather, I am here typing and venting and trying to discern what in the world could have helped this situation. I firmly believe with every fiber of my being that we must (must must must) provide our healthcare professionals more disability awareness training while they are in school, as well as after for continuing education. I don't mean a half paragraph in the textbooks either. I mean expose them to a variety of disabilities -- have them treat, examine, talk with people with actual disabilities.

No one we encountered today had any idea what Cerebral Palsy was or how it affected Benjamin. Earlier this week he spent an hour with the pre-op nurse by phone answering pages of questions about himself and his abilities, etc. We did not do some sneak attack stuff that didn't allow them to have a heads up as to their patient today.

And yet.

Maybe next time he SHOULD show up with the fins and gills.