Thursday, January 10, 2013

What Life is This?

I was getting out of the car after having dropped Simon off for his afternoon program and I realized, halfway out of the driver seat, that I hadn't grabbed his backpack. I turned around to get it and had one of those moments.
It was less than a second pause on my part or maybe it was the way the 3:47pm light was hitting the passenger side of the car but there it was. A small black backpack, certainly not my size, with blended food stains on it, what looks like an IV bag with purple green liquid remnants, a tube long enough to reach the back seat, and a pump machine that looks more like a 1980's portable video game than the small but lifesaving machine that puts food directly into my son's stomach via a surgically placed port that makes him slightly robotic. Also in that bag there are diapers and wipes for a 4.5 year old. There are extra syringes, hand sanitizer wipes, an extra mic-key button for emergencies and more medical history information for said 4.5 year old than I have for myself in 39 years.
I saw that bag and those tubes and thought "what life is this?"
I don't think it very often anymore. That's probably why I haven't written in so long but I thought it just now.

Simon and I have been in some sort of 'normal' groove. We've had almost 4 months of the same schedule, the same appointments, and the same status quo. It's been good.
Since September he's gone to school in the morning, come home for lunch, and then gone to Temple Sinai's aftercare program in the afternoon. I've gone to yoga, come home and prepared lunch, shared a therapeutic meal with him, gotten him to Temple Sinai and then taken care of household business in the afternoon. We've had weekly appointments on Tuesdays (Hippotherapy) and Wednesdays (feeding therapy in SF). We've had  one GI appointment and one cardiology appointment and the very rare and random sick day but really it's been a good solid run of same same.  It's been good.

So why did that question pop into my head. What life is this? It's felt normal for quite a while but right there in that instance it felt so odd to see a feeding bag and pump on the passenger seat of my car. Who carries that around? What mature (and I use that word sparingly) woman (besides my very hip mother) carries around a mini backpack let alone one that carries all that crap that's not even for myself.

I think about other mothers of pre-school age kids and I realize I have no sense of what their lives are like. I think about it like the time before I was a parent and thought I had a sense of what it was like to care for someone. You can't really know unless you sign on for the lifelong position. I don't really understand what parenting without tube feeding, medication administration, gross motor, fine motor, speech delays is about?
What do you do all day? I know my sister parents and she does it brutifully with grace and bumps. I know that the parents that I worked with when I was a camp person or school social worker really seemed like they were wholeheartedly invested in parenting (mostly- there were a few ragamuffins that needed some pants kicking) but really....what do you do with your time?
It's not a real question but mostly just feeling a little green today that I can't even comprehend it. I really have the utmost respect for any single or multiple of persons that invite a little being into their lives with the intention of growing them.
...and  I'm feeling more than just a little separate from those of you that get to do it without long hospital stays, feeding tubes, critical illnesses, and/or the parenting plus experience however it may show up for my sisters and brothers that are nodding their heads up and down right now.

It's this life.

On a different but certainly connected note. This life of mine is just days away from changing dramatically. On Monday I will start a part time Chaplaincy program. I will work 21 hours a week outside my home in a capacity that has nothing to do with Simon and/or me caring for him. I will be a chaplaincy student. I will be ministering to patients. The hospital setting is now like another home for me but this will be all about other people and not me or my son. I get to offer myself up for comfort, for connection, and not just to the little being that I love to do that for but need some space from. I'm so frikkin' excited
I'm so excited and scared. It's mostly like 90%- 10% but that 10% is starting to feel more real.

What if it can't work out right now logistically? What if it's so much build up and excitement for nothing. I feel this calling to it and really want to get started and it seems like it might happen. What if it can't right now?
What if it feels like a 'calling' but I get to orientation on Monday and the reality of the job does not match the call?
What if I'm older/younger/smarter/dumber/funnier looking than my other cohort members?
Where can I get a copy of the old/new testament/Qur'an/most perfect thing ever to read to a patient?

It's going to happen. Monday is coming. It's only been 4 years and 10 months since I've been home being a mom to Simon. That's a long time to be doing the same thing.
Ok, one month of that he was still in utero and I spent most of my time taking the dog for long walks but still.
A change is gonna come. It might just be momentous.
I'll let you know.

Big love


Simon in his new Berber coat from Algeria (Thank you Djaffar!!)

 Simon in the latest boxing attire

I do it myself!

Ok Moses, you can help while I eat a Turkey Wing

Checking out the Holiday Lights in SF
 With my G'Paw and GG

It's not real, I'm just practicing

Checking out the world wide webs with Mamaw

A little curious George with Chris

What is he thinking?

A little Mama love

At Fentons Ice Cream Shop

Getting ready for our last riding lesson of the year

Simon and Maya (his look is totally- "can we have some privacy please?"

 Tossing rings is so much better than tossing his cookies right?

New Years day outing to Dolores Park
I might be in SF but I'm gonna find the only Oakland A's fan and jam with him

Superman pajamas- T-Rex stance

Yes, I'm superman, what else is nu?

New Pajamas, new hand drum, new year!

2013- Bring it!


susan said...

I think CPE will be great. It will also kick your butt. But it will do so in ways that are totally different from being a mom.

To answer your first question--the hospital has holy scripture in every religion they can think of. You don't have to have it. I,though, did end up typing up a cheat sheet of the prayers that were from traditions not my own. I pasted the pages into a blank journal. I still have it, though I don't need it anymore.

Other piece of advice: bring a water bottle (hospital water will make you broke and you'll always be thirsty) and wear comfortable shoes, though they usually say no to sneakers on the east coast. Oh, and it helps to wear a blazer of some kind, because you can stash the beeper, the map of the hospital and other random things in it. But your mileage will vary.

I'm so happy for you going on this opportunity. It will be so cool to have something outside of home to feed you, and your experiences will be great fodder.

I can't wait to hear back!

Jen said...

Well, fortunately you will be the funniest looking one there, so at least that's handled. You can breathe a sigh of relief.
You know what I really think Fitch. Told ya the other day. Love and love and more love. Wheeeeeeeeeeeeee and Wahoooooooooooooo!!!