“If you’re trying to kill us, at least let me put on some lip gloss.” ~Fran in the movie “Rollercoaster”
A day in the life. Today.
I do a lot for people and have found that few return the favor. That is fine, just a fact. Let’s face it, how many people would really be there for you? Although this was light-weight, it was really nice.
As it so happens, when a goddess could use some information, you get it, however you need to, right? Well, at least I do. We needed some information about how the school district works on the inside. As you can imagine, I know every “Assistant Superintendent for Student Services” over the last 18 years. It is not just since this blog that I am a voracious advocate. One in particular I email maybe once or twice a year, or will bcc on an email I think she would appreciate. Note that when she was in the position, she got some of SingleDad’s emails that were, well, probably a bit bothersome. But now, I knew I wanted to talk. I sent her an email and the subject line was “I need your help.” Not something SingleDad says easily. The short body of the email explained a bit. Within an hour her response was, “when and where are you available?” That really made me feel good.
We met at a local cafe (that serves my coffee named after Pearlsky). During the conversation, concerning Aphrodite’s kid, she suggests that I go to the IEP as well. I interjected …
I don’t think she wants me there … she is worried about my reputation.
Her face got serious and she said …
Oh no. SingleDad has a lot of respect from everyone in the district and there is no issue there at all. He is an asset.
That made me feel great. If anything, I was even tougher back then, it included the No Child Left Behind fights and other stuff. This woman was, and is, very connected, very smart and savy, and, well, I felt good.
As we were leaving, (and I even got a hug!) she said, “You do know that when you Google my name, one of your emails comes up on the first page!”
I checked. Oy.
Then it is off to the hospital for a scheduled “swallow study” followed by a scheduled neurology appointment. There was no valid real reason for the swallow study (not worth blogging about), but what the heck. All nice people, Pearlsky in a special chair in a fluoroscope machine, and I feed her from a strange angle (straight on) while they watch the x-ray movie. Fun! She scarfs down the hummus / barium mixture. Swallows like a pro; a regular black widow. Then on to the liquid barium. She aspirates a bit, they thicken it, she aspirates a bit, they thicken it again, … each time there was a bit of aspiration (some going down towards the lungs, not the stomach). I was in a physical position that I have never had her drink from before, she was distracted, and, well, not sure what to make of it. “Silent aspiration” The key is, she has NEVER had any pulmonary problem. We will be talking to the doctors, and I am sure we will do nothing (no advice please, not yet). I was a bit shaken, but not stirred. Then the therapist said something at the end that ticked me off a bit …
We will look over the data and tell you our decision on how to proceed.
You mean your “recommendation,” right?
She just looked at me. Like a puppy dog or something. I looked her in the eyes and said …
Your recommendation on the next steps not your decision.
She could not bring herself to agree with me. Whatever.
We then go to neurology. Sitting there, just getting started and my cell phone rings. I check it because of David, etc. It is my ex-wife. I tell the doctor who it is and I answer it.
David just had a major seizure, probably the worst ever.
Hold on, I’ll put you on the speaker phone. We are in with the neurologist.
Yep, major seizure. Pulse went over 150, full body flush, Diastat. It passed and he is ok. For now.
Up. Down. Left. Right. Cyclone. Double Down Drop. Immelmann. All on a woodie.
I need a drink.
Hello Single Dad, I only discovered your blog yesterday (thanks to Claire over at life with a severely disabled child), but have bactracked through a few posts.
I love your approach (and like you.. I don’t like idiots) and I LOVE the correction you made for the therapist… they MUST remember that they are making RECOMMENDATIONS not decisions and get over their god complex.
Looking forward to keeping in touch with your posts! Keep up the activism!.
Wow glad to hear your son is OK. Must have nearly given you a heart attack to hear something like that on the phone. Hopefully that seizure was just a fluke…
“You mean your “recommendation,” right?”
Ah yes. Freedom is a constant struggle.
You’re right, you do a LOT for people. And people appreciate it. 🙂
As for the therapist, maybe she meant the “decision” of what their recommendation should be. As in, they need to decide if they should recommend treatment or not.
I hope David is okay. How much time lapsed between the seizure and the phone call?
I wish I could run over there right now and bring you a drink. I’ve been thinking about you of late — I’m one of those people who you’ve been particularly giving toward and I hope you know how much I appreciate it.
I would mix you a hell of a drink.
It never really ends does it? It really is some kind of trippy rollercoaster, and although I am just getting a taste of how you have managed mentally, how have you managed physically? Since the mind and boy are so connected, you ever have physical issues you had to deal with that went with all the stress?
Love the recommendation line. You are one tough hombre. I want you to be in the next Predator movie. As the Predator.
Is there something in the air this week? Has the earth tilted a hair on it’s axis? I’ve got it coming at all angles as well but you manage to handle it with much more grace than I.
I have a Sam Adams in one hand and a shot of Jameson in the other just for you. And right now I’m feeling pretty darn fortunate to have the freedom to drink them both myself.
Prayers said for David.
You may never know how many people have benefited from what you do (have done – as in those who read your email online). I’m glad you were given the gift of knowing you have helped others from the former “Assistant Superintendent for Student Services”.
Thank you, Rivka, for giving the therapist the benefit of the doubt.
As for your stress….prayers said for SingleDad.
I would have you at our IEP meeting any day 🙂 And you are much appreciated.