Monday, January 16, 2012

Never Out of a Job

These are tough times. Unemployment. Inflation. Debt.
And, I will never be out of a job.

Today this thought makes me want to jab 60ml syringes full of blended food into my eyes (and for those of you in the 'know', those are big syringes). It's a day where I cannot figure out what to do with myself or for myself. It's a day where Jaime is off work and wanting to be there and help and take things on, and does, and I still feel myself spiraling down into the depths of despair. The 'work' that I speak of, that beautiful boy that is growing and changing in leaps and bounds (in small but relative ways), that amazing boy that has lived when so many thought he wouldn't. That boy that is giving love in new and wonderful ways, that's the 'work', the job, that is so secure in these troubled times.
Today, that 'work' feels laid out before me, a road paved with poopy diapers, miscommunicated owies, unattended yoga classes, feeding therapy groups attended, developmental milestones missed, medical appoints never missed and a career finally found and off to a wonderful start.... halted.

I took Roxie for a long walk Saturday, tooled around China Town and San Francisco with Simon and Jaime yesterday, and repeated the Roxie walk today. My body hurts. I pulled a muscle last week and can't seem to get it better. I have had a pain in my achilles for months now and have not taken care of it. I have a herniated disk in my back that some days is so unbearable that to bend down and unlock the ChildSafety on the toilet almost doesn't seem worth it. (read that one again....take it in. I'm not kidding.)
I have at least 10 pounds on me that are not helping and probably 30 total that should come off to stop making Jaime worried that she'll be pushing me around in a wheelchair during those old people adventure cruises. (Please note that Jaime is not in anyway pressuring me to 'lose weight' only to take care of myself so that I may be around as long as she plans to be and that we may someday enjoy retirement living long and wonderful lives together - how selfish is that?!)

And I got nothing for any of it.

I have Simon's schedule down. I have his med doses and weight changes and barfage volume, and poop consistency, and ejection fraction and shortening fraction and BNP and tube feeding schedule and oral foods for play versus swallowing and fine motor and gross motor delays and appointments....down.
Ask me about any of those and I can tell you what's happening and when.

Ask me what I want to do to take care of myself, what I would do if I had the time, what I do do when I do have the time (yes I said doo doo), and not only do I not have an answer but I have a reaction that feels no less than a complete shut down (I just typed "shit down" instead and almost kept it.)

Today I am so angry about it I can barely stand to be around myself, let alone Simon and Jaime. AND IT'S A HOLIDAY. ONE WHERE JAIME IS HOME. A holiday that I love and want to celebrate with Simon in meaningful ways so the knows that Dr Martin Luther King Jr was an incredible man, part of an incredible movement, and we're keepin' on with keepin' on.

And all I can fucking think about today is how it feels like I will never ever be done with changing really messy poopy diapers because my son is dependent on stool softeners and won't ever be able to tell me that he's got to GO potty instead of me having to smell it and look to see if it's gas or solid with no consistent verbal telling. I can't stop thinking that no one will ever want to hire me again because who wants a social worker that's been out of the field for so many years and isn't up on the new systems or approaches or therapies? When will I stop buying and blending and freezing pounds and pounds of fresh fruits and vegetables so that every other day I can make two days worth of a green or orange shake that at some point will end up in my hair, on my clothes, or somewhere on the child requiring a complete costume change? When will we no longer have medications, syringes and food pumps/bags delivered to our house on a monthly basis?

I know it will happen at some point. Either Simon will switch to pills and manage his meds on his own and/or he'll start eating by mouth. I know that someday he will poop on the potty. I know that I will go out for job interviews and explain my very good reason for not being at 'work' for the last 5,6,7 years. I know that employer will be so moved by the work that I have been doing that they will offer me the job on the spot with flexible hours so that I can still be there for Simon (at the highest rate of pay possible given all that amazing experience.)   I know that is likely.
But....we are years away from that. Years. And today that feels just about the same as never. It's never going to happen.

A friend asked me how I'm doing, me, at the hardest job in the world?
I can't help but remember how much harder it could be.

And, today is feels fucking hard with no end in sight.

 I don't want to leave the company. Maybe a lateral move, a short term project. No, I don't think there's any of that in my immediate or even short term future. No pay raises, no cutbacks, not even the chance of bringing in someone just as qualified to do the work for less pay (you can't really cut $0.00 down much more).

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Thank goodness my product is top of the line and really good lookin'. 

Playing with Bubbles

Practicing poses for his first school picture day- Coquette?



Runway Ready

Where's my bike?

San Francisco Cable Car excursion

So very very cool

On the hunt for Dim Sum in China Town

It's just a rant. I'll get over it. Just give me a minute.