Inside the Actor’s Studio with Ewokmama

Yes, I’m using a prompt for this NaBloPoMo post. Don’t worry – I wrote it on the right day. 🙂 (I’m in Spain right now and that’s just how it’s got to be!)

  1. What is your favorite word?  Adore (back when I was too nervous to say that I loved David, I told him I adored him)
  2. What is your least favorite word? Irregardless (it’s actually a word, but it totally shouldn’t be!)
  3. What turns you on creatively, spiritually or emotionally? Humor. There is nothing like laughter to get me in the mood for just about anything.
  4. What turns you off?  When someone tries to tell me what I “really” think/mean/should do.
  5. What is your favorite curse word? I know this isn’t very original, but I do love the work fuck. I used to ride my bike down the street as a child shouting it into the wind. It’s very versatile, and even better when combined with a string of other swear words.
  6. What sound or noise do you love? Raindrops on the forest floor (which is funny because I don’t even like the outdoors).
  7. What sound or noise do you hate? An alarm clock buzzer, especially when used in a commercial!!
  8. What profession other than your own would you like to attempt? Maybe acting, which isn’t a far stretch from being an administrative assistant, honestly…but maybe I’d have more interesting things to wear and other people to do my makeup and hair.
  9. What profession would you not like to do?  Cleaning. OMG do I hate cleaning! I could not make it as a janitor.
  10. If Heaven exists, what would you like to hear God say when you arrive at the Pearly Gates? Oh…yeah, sorry about that. Here’s an endless supply of mojitos for your afterlife.

Twist Me Up And Wring Me Out

It’s only Tuesday? I thought as I stared at the pill organizer. How is that possible?

The anxiety in my chest grew. But that’s what day the organizer told me it was. The next dose of medication was right there. My phone agreed that it was Tuesday, as well. I shook my head and sighed.

I can’t wait until Friday.

Yesterday had involved an insulting call from the social worker at the clinic: “Um….hiiiiii. How are you today? How’s Jack? Um, I’m calling because Gina (the child life specialist) and I thought we should sit down and talk with you on Monday about…umm…Jack’s…school isssssuuuuues.”

My reply was something like, “Right, well, I know Gina thinks it’s school avoidance but I really don’t think that’s the case. Jack is very upset with himself when he can’t make it to school. And this isn’t new – it’s been going on since treatment started – it’s just that we thought it was normal due to the intense treatment. He was missing school then anyway. But treatment is less intense now and he still has these problems and he’s supposed to be able to go to school. In any case, I won’t be there on Monday – his dad is bringing him into the clinic. You can talk to him if you’d like.”

“Oh, well, okaaaay. Well, it’s you we’d like to talk to. So, um…alright. We won’t do that then.”

And then she (absolutely the least helpful professional I’ve ever met) droned on and on. She said some stuff about how special and smart and sensitive Jack is and at some point I just tuned her out. Sure, she WANTS to help…but she is completely inept. I could hear her grasping for the proper words to use when talking about Jack’s ‘issues.’ It was painfully obvious that she was stepping lightly. She was in parenting territory, something that she’s proven before that she knows nothing about, and I hadn’t even asked for her help.

Lady, turn back now. You don’t belong here.

A couple of hours later, I chatted with our nurse case manager about Jack’s lab results. They were good enough that he could the next day’s dental appointment, but the acidosis hadn’t improved at all over the weekend, so they instructed us to increase the sodium bicarbonate from two pills a day to four. And let me know that chemo can’t be taken at the same time as bicarb or anything else…which I hadn’t realized before.

Oops. I’d been screwing up the pill administration for…oh, almost two years now. Great.

Later that evening I took my 13-year-old cat to the vet and walked out of there $120 poorer and with no definite answers. ‘Cause that’s how I like to party.

So today, as I stared at the pill organizer and the bottle of antibiotics sitting next to it, I shook my head and sighed. Really, how could it only be Tuesday?

I gave Jack four horse-sized antibiotic pills. He actually chewed them all up without incident.

I was more than surprised.

I asked Jack to pick out his own DVD to watch at the dentist office (of course he chose Dr. Who) and off we went. It would be okay…I hoped.

The appointment went well, all things considered. He certainly yowled less than he did at his last appointment. His teeth got cleaned and x-rays were taken and that’s what matters, right? Not the stand-offish dental hygienist who clearly thought that the fact that he wouldn’t sit still was a discipline issue. Not the tears all over my kid’s face from being essentially trapped while he was poked and prodded in a sensitive place.

[Take a 7-year-old who isn’t a great brusher, add a blood disease and suppressed immune system that makes it dangerous to floss, and what do you get? An uncooperative dental patient.]

Halfway through the appointment, Jack complained of chest pain while laying in the tilted-down chair and it only got worse. We went to the store to grab some tums (I’m not organized enough to carry them with me wherever I go yet) and sit for a bit while I had a warm beverage to calm my rankled nerves. I had to carry Jack through the store and he slumped in his chair when we sat down. After half an hour, the tums still hadn’t helped.

So we followed up that dental appointment with a trip to the ER, where Jack got an EKG and a chest x-ray per his oncologist’s orders. They gave him Maalox and, after a while, his pain had gone from a 5 to a 1. They sent us home.

This morning in between staring at the pill organizer with consternation, giving Jack five spoonfuls of pills in nutella, and attempting to get us both out the door and emotionally prepared for the dentist, I’d forgotten to administer Zantac. I’d given him four antibiotic pills, two sodium bicarbonate pills, and one Diamox pill…but forgot the antacid, which is a liquid.

Ugh.

I bet tomorrow I’ll stare at that pill organizer and shake my head all over again.

***

What Killed The Video Star?

I was IMing with David this morning (as I do) and he told me about a song that he is surprised he likes (Harlem by New Politics), which led me to YouTube to check it out (I don’t like it). And then I fell into a rabbit hole of terrible music videos. It was just one after another as I searched for something that didn’t suck. I saw sex where it didn’t make sense, odd characters and costumes, weird runny gloop… I decided to put together a list so that y’all wouldn’t have to endure what I did.

Although I suppose you might get curious now. Sorry ’bout that. At least I warned you, right?

WTF? Videos

Miley Cyrus – Wrecking Ball (why is she making out with the sledgehammer?)Lady Gaga – Applause (creepy!)
MS MR – Hurricane (omg gloooooop!)
MGMT – Electric Feel (just BAD!)
Churchill – Change (holy headache!)
AWOLNATION – Sail (girl needs to lay off the cigarettes, clearly)
Imagine Dragons – Radioactive (is this a JOKE?)
Arcade Fire – Reflektor (um, nightmares)

I did find some passable videos. They weren’t bizarre or completely sexed up or lacking in any connection to the meaning of the actual song. They were just kinda boring, which was actually an improvement on the gloop.

SNOOZE Videos

Lana Del Rey – Summertime Sadness
Foster The People – Pumped Up Kicks
Pearl Jam – Sirens
Girl on Fire – Alicia Keys
Royals – Lorde
Rihanna – Stay

 

Finally, I did find a few great music videos that captured the feeling of the song perfectly and didn’t have any WTF moments! These are actually worth linking.

I Approve! Videos

Macklemore & Ryan Lewis – Thrift Shop
Anna Kendrick – Cups
Tegan & Sara – Closer

 

And then I gave up because THREE, you guys. I found THREE.

I remember back in the day when music videos were the big thing. And now? They pretty much suck. Boo, I say, BOO. Bring back the video star!

Have you seen any good music videos lately?

Just Write [108]: In Charge

He walked into the bedroom where I was laying alone in the dark, hiding. A mountain of wadded up tissue was on my nightstand and my phone was in my hand. New tears popped into my already puffy eyes, even though I’d already been crying for hours. How could I still have tears left?

“I know I’ve said this before, but you need to ask for help. You need to tell me what you need me to do.”

“I don’t want to be in charge of everything,” I mumbled. I was completely enveloped in self pity.

“You don’t have to be charge of everything,” he replied.

I thought ‘you’re wrong.’

You need to tell me what to do.

That right there means I’m in charge. I have to know what needs to be done and I have to delegate the things I can’t do.

I never wanted to manage another person. Long ago I recognized that counting on other people to do things in my stead is not something I excel at. My childhood didn’t prepare me for that – it prepared me to take care of things myself. And that continued beyond childhood – I’ve made my career as an administrative assistant – someone else’s right hand. I’m the one people depend on, not the other way around.

Of course, being a parent means I am managing someone, albeit in a different way. I am the ultimate authority in my house about what happens with my son. I chose that role and I accept it.

I am not the best boss, but I fulfill my commitment. I’ve helped my son learn and grow and even thrive (despite his illness and my own shortcomings).

But taking care of a special needs child demands more of me than I ever knew was possible. I am not looking to unload the responsibility or shirk my duty. It’s just that sometimes it is exhausting. Because regardless of how many parents Jack has, I am still in charge.

I am in charge because I know more about him and his medical condition than any of his other parents – by choice. I am in charge because the doctors look to me first for information. I am in charge because I have the job that supplies the insurance. I am in charge because I have primary custody – again, by choice.

I am in charge because, in so many instances, I am the ONLY person Jack lets be in charge of things related to him.

I make his doctor appointments. I sort his pills every week and refill his prescriptions. I call the clinic…over and over. I refresh the test results page and I calculate his ANC. I arrange for childcare or changes to his schedule with his dad and step-mom. I know which foods he eats and which he isn’t into anymore. I know when he’s breathing funny or he is on the brink of a meltdown. I’ve documented so much of his life – on paper and in my mind – and I am the default caregiver because of it.

I could ask for help with all of those things, but taking care of Jack is so ingrained in me that it doesn’t even occur to me to ask for help. Why would I? It’s MY JOB. I’m his mother.

No one can lighten that load – I can delegate every parenting-related task I have, and I will still feel the weight of each responsibility because I am in charge no matter what anyone says.

****

This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.

Just Write: He’s Okay…Mostly, I Think

“How’s Jack doing?”

I’ve been asked this question at least five times so far today. Each time I give the same answer in the same way, “Yeah…well, eh, mostly. He will be okay, I think. He’s just not feeling well after chemo yesterday.”

He was doing just fine last night. In fact, he was very energetic and LOUD, humming or squawking while playing with his Legos. It was overwhelming to me, as I’d just come home from my trip to Type A in Atlanta. I wanted quiet.

This morning, though, it was too quiet. Jack crawled on the floor from his bedroom to the living room. He laid down on the couch while eating breakfast and I covered him with a blanket while pushing play on iTunes so he could listen to The Postal Service at low volume. He ate his waffle slowly, and afterward he leaned on me to get to the bathroom to halfheartedly brush his teeth. Then I picked him up and carried him back out to the couch.

He talked in hushed tones and complained of stomach pain. I smoothed his hair away from his face as I took his temperature – 98.0 degrees. I asked if he wanted to try to go to school for a bit and see if he felt better. His big brown eyes squinted up at me and he said, “I just don’t have any energy, Mom.”

“Okay, honey. I’ll tell David to come home from work. You just rest,” I replied.

I looked at our finances while I waited for David to come home from work. I wondered if we could somehow make it work on one salary so that I could stay home full time with Jack. I worried this was a pattern that would not go away. I added and subtracted and, with a knot in my stomach, acknowledged that it was impossible – we have too much debt and a large mortgage payment.

I called the clinic to get confirmation of Jack’s ANC. The nurse told me it was sitting at 690, which is fairly decent but not great. She asked how he was doing and then said, “Call us if he isn’t feeling better by the end of the week.”

I called the school and answered the question again. Then I drove to work, where I told a few more people that Jack wasn’t feeling well. I got a call from my sister in the afternoon, and I spoke to one of the care providers at Jack’s after-school program – both asked and I explained in that halting way.

Jack’s okay…mostly. I think. We’ll see.

****

This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.